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Lady Menelwen
January 25th, 2016, 02:35 PM
I'm a disabled long haired princess. I battle my mental and physical health on a daily basis.

I tend to not have the energy to brush my hair everyday...it's horrible. I get splits to high heaven, and snarls and knots that really takes more energy to get out than brushing every day seems to take!

It's a vicious, vicious cycle.

I'm curious if there is anyone else here like that or if there are any threads that tackle the issues of maintaining long hair even when our chronic health issues start taking it's toll.

lapushka
January 25th, 2016, 02:54 PM
I'm a disabled long haired princess. I battle my mental and physical health on a daily basis.

I tend to not have the energy to brush my hair everyday...it's horrible. I get splits to high heaven, and snarls and knots that really takes more energy to get out than brushing every day seems to take!

It's a vicious, vicious cycle.

I'm curious if there is anyone else here like that or if there are any threads that tackle the issues of maintaining long hair even when our chronic health issues start taking it's toll.

I have a disability (legs) and chronic pain as well. I have my wash day every Sunday (my mom does that for me). My hair is left down for sleeping, but when I get up, it's only a matter of putting the hair up in a lazy wrap bun (LWB) and that takes all about 15 sec. My hair is only detangled weekly, right before the wash, and after it. It makes it easy, also because of my wave pattern.

How do you cope? And what's it like for you? Can I ask what it is you have?

Anje
January 25th, 2016, 02:57 PM
Mind if I rename this thread, something like "Longhaired and disabled"? Seems like an excellent topic maybe to put in a sticky, too.

sanari
January 25th, 2016, 03:06 PM
I am disabled with MS and tremors and brushing my curls would cause me to be fatigued. So I had my hair straightened with YUKO Japanese straightening. I can brush my hair everyday now, instead of weekly.

Lady Menelwen
January 25th, 2016, 03:20 PM
Physically, back pain in the small of my back. I also pulled a shoulder muscle pretty bad mid-teens, and it just hasn't been the same since. (Then again my doctor at the time was a walnut, so i can only hope I didn't tear anything.) Mentally...a laundry list of autism, ADHD, anxiety, depression, and cluster C and B disorders I don't really feel comfortable naming.

I cope usually just relaxing in a bath or aromatherapy. It's usually my mental health that bothers me the most since my physical pain is actually quite mild (or maybe I've just gone pain blind who knows), so it's just a day by day approach.

As for my hair, I only wash once a week as well, and just throw it in a simple ponytail. If I don't it's gets all tangled pretty fast, especially at night since the Mister has a nasty habit of laying on it. I wish I could actually do more for my hair since it's my pride and joy, and caring for it is a coping mechanism in and of itself!

Lady Menelwen
January 25th, 2016, 03:22 PM
Mind if I rename this thread, something like "Longhaired and disabled"? Seems like an excellent topic maybe to put in a sticky, too.

Oh yes please! That is a wonderful idea! (GAH! I'm so used to other sites! I forgot how this format worked!)


I am disabled with MS and tremors and brushing my curls would cause me to be fatigued. So I had my hair straightened with YUKO Japanese straightening. I can brush my hair everyday now, instead of weekly.

Oh wow! I just looked up that technique and it looks so cool! Is it similar to a Brazilian blow-out or does it involve less maintaining? My hair isn't as curly as yours though, so I can't really justify the money...but it does look like something I'd try once just to maybe save some energy!

Anje
January 25th, 2016, 03:41 PM
Oh yes please! That is a wonderful idea! (GAH! I'm so used to other sites! I forgot how this format worked!)
It'll get easier too with a few more posts when you have permissions to go back and edit when you need to add something. :)

sanari
January 25th, 2016, 03:42 PM
It is nothing like the Brazilian blowout. It is permanent-even after washes.

http://forums.longhaircommunity.com/showthread.php?t=135863

Lady Menelwen
January 25th, 2016, 03:45 PM
It i it is looking like it is nothing like the Brazilian blowout. It is permanent-even after washes.

http://forums.longhaircommunity.com/showthread.php?t=135863

Oh wow! Your hair is gorgeous!


It'll get easier too with a few more posts when you have permissions to go back and edit when you need to add something. :)

haha yeah! Last time I used a system like this was soooo long ago!

sanari
January 25th, 2016, 03:53 PM
Oh wow! Your hair is gorgeous!

Thanks lady :)

Jenw777
January 25th, 2016, 04:53 PM
Yes! I have one hand, so braids and buns are less neat than I'd like. I manage alright, but new styles are much harder to learn, due to reach.

Freija
January 25th, 2016, 05:03 PM
I can identify with not having the energy to brush (or wash) consistently. I'm not sure I'd call myself disabled, but I do have MH diagnoses and I've struggled pretty badly at times over the past few years. For me, I just don't even try to fight it. I just stick it up in a bun until I'm ready to deal with it, then I wash it and use lots of conditioner (WCC). Generally the tangles just slide out then.

I wish I knew how to avoid getting spots/sore patches on my scalp, though. I get them if I consistently go too long (over three or four days) between washes. Dry shampoo doesn't help since it just clogs up my scalp even more, and obviously if I'm not well enough to wash my hair then brushing/scritching/preening aren't going to happen either.

Lady Menelwen
January 25th, 2016, 09:29 PM
I can identify with not having the energy to brush (or wash) consistently. I'm not sure I'd call myself disabled, but I do have MH diagnoses and I've struggled pretty badly at times over the past few years. For me, I just don't even try to fight it. I just stick it up in a bun until I'm ready to deal with it, then I wash it and use lots of conditioner (WCC). Generally the tangles just slide out then.

I wish I knew how to avoid getting spots/sore patches on my scalp, though. I get them if I consistently go too long (over three or four days) between washes. Dry shampoo doesn't help since it just clogs up my scalp even more, and obviously if I'm not well enough to wash my hair then brushing/scritching/preening aren't going to happen either.

This thread is still for you! It's for anyone with any sort of mental or physical ailment that interferes with personal hygiene or preening.

How sensitive is your scalp and nose? Tea Tree and peppermint oils help with those issues, but I wouldn't recommend such treatments to anyone with sensitivities that would cause more discomfort, especially when your low on energy. Other than that, I'm not too sure since my only problems are dandruff and itchy scalp.

Freija
January 25th, 2016, 09:39 PM
This thread is still for you! It's for anyone with any sort of mental or physical ailment that interferes with personal hygiene or preening.

How sensitive is your scalp and nose? Tea Tree and peppermint oils help with those issues, but I wouldn't recommend such treatments to anyone with sensitivities that would cause more discomfort, especially when your low on energy. Other than that, I'm not too sure since my only problems are dandruff and itchy scalp.

Thank you. : )

Funnily enough, I have skin sensitivities and react physically to lots of stuff (mostly dyes and artificial fragrances), and I can get really emotional and hypersensitive about strong smells - but tea tree is one of the few things I get on fine with, and it's in one of my favourite shampoos. How do you think would be best to use it?

lapis_lazuli
January 25th, 2016, 09:47 PM
I'm not physically disabled, but I too identify with this thread. Most days I don't have the energy to get out of bed, and if I do, I have to channel all that I have into getting my hair up in a bun (OCD doesn't help as I have to redo it several times before I'm content). That's pretty much as far as I can get preening/hygiene-wise. It's embarrassing, really. I know I have to look after myself better but my depression has peaked recently. Sorry if I'm in the wrong thread.
Just want to spread hugs and support to others on here :grouphug: :blossom:

Lady Menelwen
January 25th, 2016, 10:08 PM
I'm not physically disabled, but I too identify with this thread. Most days I don't have the energy to get out of bed, and if I do, I have to channel all that I have into getting my hair up in a bun (OCD doesn't help as I have to redo it several times before I'm content). That's pretty much as far as I can get preening/hygiene-wise. It's embarrassing, really. I know I have to look after myself better but my depression has peaked recently. Sorry if I'm in the wrong thread.
Just want to spread hugs and support to others on here :grouphug: :blossom:

Not at all~ Mental illnesses are qualifiers! Any chronic illness that makes it so you don't have the energy (some even use the term 'spoons') to do much is enough!

And I feel you on that depression. Booger likes to do the foxtrot with my anxiety and really mess me up good.

languagenut
January 25th, 2016, 10:21 PM
I'm not physically disabled, but I too identify with this thread. Most days I don't have the energy to get out of bed, and if I do, I have to channel all that I have into getting my hair up in a bun (OCD doesn't help as I have to redo it several times before I'm content). That's pretty much as far as I can get preening/hygiene-wise. It's embarrassing, really. I know I have to look after myself better but my depression has peaked recently. Sorry if I'm in the wrong thread.
Just want to spread hugs and support to others on here :grouphug: :blossom:

I totally understand the OCD thing; Whenever I try to do anything with my hair I end up with a lump or a loop or loose strands, or it's a little off-center, and the more I try to fix it, the worse it gets, and finally I take it out and redo it, and then it's still flawed, so I do it again, and it can take me literally hours to do a very simple style!

jenw777, I didn't realise that doing braids and buns with one hand was even possible! I'm very impressed! :D I mean that sincerely; hope that doesn't bother you (sorry I'm so awkward!).

Nadine <3
January 25th, 2016, 10:31 PM
Me! I suffer from depression, severe anxiety and panic attacks, PTSD, and Bipolar. The Bipolar is a new diagnosis so I'm still trying to wrap my head around that one, but some of my behaviours are making sense.
My hair does sometimes suffer for it. Sometimes I'm anxious and shaky so I have a hard time being patient when brushing or getting it into a bun. I've pulled through more than a few tangles doing that. Sometimes I'm depressed and have no energy to wash it. It takes so long to wash and dry it. During panic attacks I sometimes pull it before I realize what I'm doing. The pain distracts me for a split second, enough for a minute of calm. I used to physically harm myself in other ways that were far worse and way more dangerous during attacks...Hair pulling is probably not much better, but whatever. It's something I don't realize I'm doing until I've done it.

Lady Menelwen
January 25th, 2016, 10:52 PM
Thank you. : )

Funnily enough, I have skin sensitivities and react physically to lots of stuff (mostly dyes and artificial fragrances), and I can get really emotional and hypersensitive about strong smells - but tea tree is one of the few things I get on fine with, and it's in one of my favourite shampoos. How do you think would be best to use it?

If you have the actual oil, upping the percentage in your shampoo should do it. Or if you use any oil treatment you can add a few drops to that too (that's what I do).

chen bao jun
January 26th, 2016, 07:05 AM
I'm not physically disabled, but I too identify with this thread. Most days I don't have the energy to get out of bed, and if I do, I have to channel all that I have into getting my hair up in a bun (OCD doesn't help as I have to redo it several times before I'm content). That's pretty much as far as I can get preening/hygiene-wise. It's embarrassing, really. I know I have to look after myself better but my depression has peaked recently. Sorry if I'm in the wrong thread.
Just want to spread hugs and support to others on here :grouphug: :blossom:

Hugs to you. I've been in this place. You can't 'look after yourself better' when depression has peaked, its hard to remember with anxiety issues, but its very important. Congratulate yourself each day on what you DID do, don't worry about what you didn't (weren't able to) do. If you have to redo things several times right now, you just have to. (Been there too and still always struggle with the OCD, that one is chronic).

Don't let it make you feel like a bad or deficient person, you are a person with a real illness.

Besides medication, when you are able please get some cognitive behavioral therapy, this really helps longterm to help with the thinking that is paralyzing you.

And I'm sure you already know, but I feel I have to say, watch out and let your friends and family watch out for that point at which the medication works and you have a little energy, I've known a couple of cases recently where it did happen just as you are always warned about, the depressed person was in such despair that the moment they had a little energy, before the medication started to work otherwise, they destroyed themselves, so devastating not just for them but the people around them.

Hair is the least of the issues here.

Its good you can get on LHC, its a good distraction which is probably just what you need at the moment (at least to a certain extent, it shouldn't stop you from keeping getting help for your illness).

There is light at the end of the tunnel.

lapis_lazuli
January 26th, 2016, 07:57 AM
Hugs to you. I've been in this place. You can't 'look after yourself better' when depression has peaked, its hard to remember with anxiety issues, but its very important. Congratulate yourself each day on what you DID do, don't worry about what you didn't (weren't able to) do. If you have to redo things several times right now, you just have to. (Been there too and still always struggle with the OCD, that one is chronic).

Don't let it make you feel like a bad or deficient person, you are a person with a real illness.

Besides medication, when you are able please get some cognitive behavioral therapy, this really helps longterm to help with the thinking that is paralyzing you.

And I'm sure you already know, but I feel I have to say, watch out and let your friends and family watch out for that point at which the medication works and you have a little energy, I've known a couple of cases recently where it did happen just as you are always warned about, the depressed person was in such despair that the moment they had a little energy, before the medication started to work otherwise, they destroyed themselves, so devastating not just for them but the people around them.

Hair is the least of the issues here.

Its good you can get on LHC, its a good distraction which is probably just what you need at the moment (at least to a certain extent, it shouldn't stop you from keeping getting help for your illness).

There is light at the end of the tunnel.

Thank you, chen bao jun :grouphug:
I've been in therapy for years now. I was in intensive treatment a few months ago that focused around DBT (dialectical behaviour therapy) and am now attending weekly groups to continue that work.
I really want to believe there's light at the end of the tunnel but I'm in such despair at the moment that I almost do want to destroy myself. My medication is not working (it's the 5th antidepressant I've been on) as I still feel miserable. The process of getting a psychiatrist is very slow in Canada so I can't change that at present.
But you're right, LHC (and my hair) is a great distraction for me which is why I'm spending more time on here lately. Thank you for your words of encouragement, I really appreciate it :flower: :blossom:

ETA:

Thank you also, languagenut and Lady Menelwen. It's nice to know I'm welcome here :flowers: I definitely sympathize with taking multiple hours to do one simple style :lol: That's always my first goal in the morning - to get my hair up and just pray that it stays the entire day :pray:

lapushka
January 26th, 2016, 08:18 AM
I just want to thank the OP for starting this thread. I think it's awesome, and I'm kicking myself for not having thought of it! :D

Lady Menelwen
January 26th, 2016, 03:48 PM
I just want to thank the OP for starting this thread. I think it's awesome, and I'm kicking myself for not having thought of it! :D

Oh goodness~ :oops: You are very welcome.

Garnetgem
January 26th, 2016, 03:56 PM
I'm a disabled long haired princess. I battle my mental and physical health on a daily basis.

I tend to not have the energy to brush my hair everyday...it's horrible. I get splits to high heaven, and snarls and knots that really takes more energy to get out than brushing every day seems to take!

It's a vicious, vicious cycle.

I'm curious if there is anyone else here like that or if there are any threads that tackle the issues of maintaining long hair even when our chronic health issues start taking it's toll.

I am am disabled and have constant chronic pain have quite long hair(just passed waist length)and i battle with tangles and can only wash once a week sometimes up to 10 days it really depends on my health and pain that it brings so cannot plan to wash,i have a badly curved and twisted spine after i broke it a few years ago and have had major surgery all held to together with metal work so bending to wash is not easy and as for condition then its not something i cant do very well i have no routine,i also suffer from PTSD,

i have to tie it back during the day to prevent tangles as i struggle to brush,but being a typical girl i wont cut my hair short! but yes i understand it becomes a vicious circle...

chen bao jun
January 26th, 2016, 04:01 PM
Lapis_Lazuli when those thoughts come to you, make sure there is someone who will talk you through them, have your psychiatrist's number to call also, let those close to you know you are having them, sometimes when you can't help yourself, others can help you. Big Big HUGS to you.

Hugs to everyone on here.

ETA:

P.S. I started doing yoga this past year and I have found that to be very helpful too. As well as the walks, the endorphins and all that.

papayatree
January 26th, 2016, 04:12 PM
I have Asperger's Syndrome, which is somewhere on the Autism Spectrum, but I don't consider myself autistic at all. Autism is the impairment of communication, Asperger's is the excuse for being socially isolated. I also have General anxiety disorder and worry about little things that most people wouldn't worry about. Instead of thinking you are handicapped, think of your self as handi capable.

lapis_lazuli
January 26th, 2016, 04:15 PM
Lapis_Lazuli when those thoughts come to you, make sure there is someone who will talk you through them, have your psychiatrist's number to call also, let those close to you know you are having them, sometimes when you can't help yourself, others can help you. Big Big HUGS to you.

Thank you for this - it is true. Also, I'm so sorry to hear about your aunt :( My condolences. It's good that you are allowing yourself to feel the sadness and ride the emotion out like a wave. I hope you'll feel better soon :blossom:

Wildcat Diva
January 26th, 2016, 07:09 PM
popping in just to visit and say glad you all can find support here. :)

Techmouse
January 26th, 2016, 11:45 PM
I have dealt with chronic pain for the last several years (6+ years), and I have to admit that my hair has probably saved my sanity on numerous occasions. Managing my stress levels is crucial, as high stress not only exacerbates my pain levels, but can also trigger crippling migraines. My preferred methods of stress relief are running and weight lifting, but my pain levels don't always allow me to do those things. Taking care of my hair has taken its place as my third favourite stress relief method. I have been known to wash my hair simply because I was stressed, in an attempt to relax. Combing my hair will almost put me to sleep. Researching hair related topics has proven to be a much needed distraction on bad days. Pretty hair toys or a new hairstyle have allowed me to feel pretty, even on bad days.
I do understand the place where one is too tired or in pain or emotionally spent to even want to bother with doing anything, let alone playing with one's hair, because I have been there, and I send virtual hugs to anyone who is or who has been in that place. :grouphug:

lapushka
January 27th, 2016, 05:57 AM
Who struggles with one or more disability or chronic ailment here?

I have disabling CRPS (late stage, diagnosed & treated almost 3 years in) in both legs (tippy toes to approx. hip region) and severe chronic nerve pain because of it, then I recently got diagnosed with Meničre's disease, and then I have hormonal migraines to top it off. It's like I'm juggling 3 things at the same time. I have medications for all 3 things, but still. It gets difficult sometimes. My hair is the only piece of me I still value, it seems, and I am not about to give that up. It brings me joy and something to feel proud of. There. Needed to get that off my chest. :o

Soulina
January 27th, 2016, 05:59 AM
I suffer for number of mental and physical problems, and my energy levels are very low. I just barely get trough workdays and really do not have energy left for anything extra, sometimes(okay nearly daily) I am too tired to eat anything after work, so I do not even think about battling my hair. I brush my hair once day after I wake up (I really do not have tangles anymore, so takes maybe 10-30 s), braid it and bun it (I do not even remember name of the bun, wrapped bun maybe?) takes few minutes and then I forget it till next morning. I try to wash my hair once a week, but just getting to shower some days feels too much.

I feel that long hair is easiest option for me, looks neat in bun even when little greasy. No dyeing, no heat, no styling, works fine for me.

I am really tired of being tired, I cant even sleep anymore without sleeping pills, and even they do not always work.

lapushka
January 27th, 2016, 06:16 AM
I am really tired of being tired, I cant even sleep anymore without sleeping pills, and even they do not always work.

I have something to relax muscles, induce sleep as well. Otherwise I would sleep 1 short night (4-6H) in 2 days. It's the pain that does it. Nerve pain can't totally be eradicated, there is always some remnant that you need to "learn to live with". And it's difficult. It just is.

Beatrixity
January 27th, 2016, 06:35 AM
Many hugs and prayers go out to everyone. We all have an unseen struggle, and it is wonderful to come together and support one another. Thank you all for creating awareness for the daily struggles. Hugs! :grouphug: :heartbeat:

elsieivy
January 27th, 2016, 09:49 AM
Hi, I don't have a disability really, but I do have chronic mental and physical health problems (a form of autoimmune arthritis and severe anxiety (multiple anxiety disorders) and mild to moderate depression.) I've found medications and therapies that work well for one thing, but I've yet to find a combo that successfully deals with everything: I have a nonhabit forming medication that works pretty well for sleep. I have medication that works sometimes for anxiety but can only be taken occasionally and doesn't work when my anxiety is especially bad. CBT worked well for especially dangerous/harmful thoughts but didn't do anything for the anxiety and if anything made it a bit worse. etc...

On the hair front I've found that pigtail styles work much better for preventing tangles than ponytails. I wear lazy wrap buns regularly as well.

Laur
January 27th, 2016, 10:29 AM
I have Ehlers-Danlos Syndrome (hypermobility type), which leaves me with a fair bit of chronic pain that I have to manage (though it's much better now than it was a few years back before I got my diagnosis). I also have a handful of mental health problems that are arguably more life-disrupting (and expensive - mood stabilizing medication is PRICEY). It all adds up to a lot of self-hate and self-judgment that is pretty unhealthy (and that I'm working on with my therapist).

Sometimes it's hard to remember to take care of myself, but taking care of my hair has been helpful. Sometimes when I feel like I really just can't be bothered to take a shower, I'll use it as an excuse to make up a deep treatment for my hair that has to sit for awhile, and then usually I'm good to wash it out. Growing out my hair (again) has been an exercise in loving something about my body - for as much anxiety as I have about my hair, I really do like having it long, and it's something I like about myself.

chen bao jun
January 27th, 2016, 12:54 PM
Hugs, Laur. Family friend has Ehler-Danlos. that is truly life disrupting.

Bopoluchi
March 19th, 2016, 07:36 AM
This thread is so good, thank you OP and everyone who’s posted here. I have chronic illness, mostly mental. Sometimes looking after my hair is soothing for me, although sometimes it’s a source of stress especially when I can see the health/beauty of my hair suffering as a result of my illnesses. My hair is knee-length, slightly wavey and of average thickness. I try to wash my hair weekly, and I’ve found that coney conditioners and coconut oils to be great at preventing tangles. Mister bottles with water and conditioner are fantastic. I wear a silk sleep cap to bed, and sometimes around the house as well, which has been great for preventing tangles and keeping my hair from drying out. Otherwise my hair is usually in a nautalus bun held with a horn hair stick.

I’ve recently gone through periods where I cant get out of bed or have really low energy, and I figure if I can keep my hair for a couple of days in the one hairstyle where I don’t need to redo it that would make things much easier for me. I’ve done this successfully with a crown braid with hardly any tangling after 4 days of the same hairdo, although it was held with bobby pins and I’m a bit uncertain as to how they damage hair. I’m going to try keeping my hair in a Madora bun for a couple of days in a row, see how I go with that. Theres a thread on the Madora bun here http://forums.longhaircommunity.com/showthread.php?t=126929

Does anyone have any recommendations for hairstyles that can stay in place for more than one day at a time?

lapushka
March 19th, 2016, 08:16 AM
Does anyone have any recommendations for hairstyles that can stay in place for more than one day at a time?

Yes, the LWB (lazy wrap bun).

summergame
March 23rd, 2016, 07:46 AM
Hello :flower:

I am diagnosed with Autisme, heavy depression, hyposomny (constantly feeling alsleep, also when I drive a car) and I am highly sensitive. Can't find work because I work slower than another person because of (Googled this one, can't translate in English)problems with fine motor skills.

Zesty
March 23rd, 2016, 08:22 AM
This is such a great thread, thanks OP. Hugs to everyone here.

My depression/bipolar is generally well-managed with my medication now, but I can feel myself backsliding a little with everything that's going on lately. I'm in the camp of "my hair helps me cope." When I was unmedicated I spent hours on the LHC and YouTube every day, learning new hairstyles and talking to the lovely people here. It was one of the few things that distracted me and brought me pleasure. Though washing sometimes takes/took a backseat as it's a chore for me.

I can't speak to physical ailments, but to those struggling with mental disorders, know it won't feel hopeless forever. And if anyone needs to talk you're welcome to PM me, FWIW.

Wusel
March 23rd, 2016, 10:27 AM
I don't know if this belongs here but I have urticaria solaris. Light allergy. So... That's why I have no pics of my hair color in the sun. I'm always afraid of summertime and spend the whole summer inside. But even in winter the light is too much.
I get sunburn after 30 second outside without SPF 50-100 and when sun touches my skin it hurts and burns. I wear sunglasses always and hoodies and hats... I feel disabled by this. You can't see it but I can feel it... And the worst thing is that people don't take it serious because it's so unknown until I hurt myself and demonstrate them by going out and coming back with sunburn. After only a minute..

lapushka
March 23rd, 2016, 11:52 AM
That is terrible Wusel. Looks like spring & summer aren't the times for you. :(

summergame
March 23rd, 2016, 01:03 PM
This is really terrible, I only heard of this disease but never 'know' someone who have it... It is more worse because nobody knows anything about it..

Petulia
March 23rd, 2016, 02:16 PM
I can very much relate to this! I have cold urticaria, so it's kind of the opposite for me. I hate going out in winter, and when it snows, it's the worst. My fingers become fully swollen to the point where braiding actually becomes difficult, and they're covered in hives and constantly burning and itching.
I know exactly what you mean about "proving" it to people. It's not very common to be allergic to certain weather conditions, and people don't believe me either until they see the state of my fingers, and then it becomes embarrassing for me and I try whatever I can to avoid showing my hands until summer comes.

Silverbleed
March 23rd, 2016, 05:32 PM
I'm a disabled long haired princess. [...]

This made me smile :flower:


I also have health issues. I suffer from chronic migraine attacks, sometimes so severe I am in bed for three days straight. It's mostly a hormonal issue. So I'm getting an attack at least every two weeks. In between I can also get attacks from stress due to my study. It's very frustrating because it can put me behind on work, causing more stress and triggering another migraine.

I also experience the 'proving' thing. Many confuse it with a headache and think I'm overreacting. A migraine also doesn't show on the outside while I'm dying inside so even if I get it during the day, people can accuse me of 'acting'. It's horrible.

Wusel
March 24th, 2016, 07:16 AM
That is terrible Wusel. Looks like spring & summer aren't the times for you. :(

No...not really... I actually wait till it's over...


This is really terrible, I only heard of this disease but never 'know' someone who have it... It is more worse because nobody knows anything about it..

No. It's not very common. And there's no cure but staying away from sunlight and using tons of very high SPF... Yesterday I went with my SO to Hamburg and it's 1,5 hours car driving, one way. I had a thick layer of SPF 50 on (which isn't nice because high SPF always is greasy, shiny, white-ish, cakey on the face when you put powder over it...) and when we came home he said: "You're very red in the face..." Even inside the car with SPF 50... Not funny... In my apartment I have thick curtains and shutters everywhere...


I can very much relate to this! I have cold urticaria, so it's kind of the opposite for me. I hate going out in winter, and when it snows, it's the worst. My fingers become fully swollen to the point where braiding actually becomes difficult, and they're covered in hives and constantly burning and itching.
I know exactly what you mean about "proving" it to people. It's not very common to be allergic to certain weather conditions, and people don't believe me either until they see the state of my fingers, and then it becomes embarrassing for me and I try whatever I can to avoid showing my hands until summer comes.

That's interesting...didn't know that there's also a cold urticaria... Yes... it's so annoying that people don't believe us and I feel your pain... :grouphug:



I also experience the 'proving' thing. Many confuse it with a headache and think I'm overreacting. A migraine also doesn't show on the outside while I'm dying inside so even if I get it during the day, people can accuse me of 'acting'. It's horrible.

Yes... I experience the same. People say I'm overreacting and that I'm nuts ant that it's my pure imagination. Until I prove them wrong.

languagenut
March 24th, 2016, 01:32 PM
I don't have either of those conditions but I understand the feeling of people not taking you seriously. Whenever we have sickness in our family I always get the worst. When we had the flu, I was down for weeks, and recently when we got the stomach bug, the others puked a couple times in the night and were up and active the next day, but I was throwing up all night and nauseous and lethargic all the next day. I was miserable, but my mom said "You always milk your illnesses as long as you can." And I said, trying not to cry, "No, I'm sick! There's a difference!" As if being sick and miserable isn't bad enough, I have to be accused of lying and laziness too?? And it's the same with monthly issues; she says sarcastically "Well, isn't that convenient?" implying that I'm making excuses just to get out of doing something. So one time I said angrily "No, it's not!" And then she says I'm overreacting. She's not a mean person, but she doesn't seem able to understand that my pain is real. :-(

lapushka
March 24th, 2016, 01:46 PM
languagenut, don't feel bad. Viruses hit people differently. You just cannot compare and pick how it affects you. I'm so sorry your mom of all people reacts that way.

When I got sick with a bug, it seemed to always be a weekend, when doctors were harder to reach, or during a Holiday. :lol: It's a running joke in my family.

Catie7
March 24th, 2016, 05:15 PM
you can say I am mentally disabled I have high-functioning autism too, anxiety and depression which I think affect my hair every day.
I pull my hair out (Trichotillomania) and pick on my scalp especially when I'm stressed. things have gotten too much better since I discovered LHC two weeks ago.
I am determined to have healthy long hair which may seem difficult sometimes ( I have bald spots that i am waiting for to regrow ) but I am going to enjoy my time waiting and try to overcome my urges.
lifes been really hard and everything else is falling apart I just want to make sure I am happy with something on me, my hair, even though it's not that perfect.
sorry if this seems passive.
we all have our struggles but the more challenges we manage to go through the more rewarding and happier we will be, won't we ?
also sorry for my not so good English.

PixieP
March 24th, 2016, 05:24 PM
I'm here to join the club!

I have fibromyalgia wich means I have constant muscle pains and fatigue, and depression anxiety and a personality disorder that also affects my energy levels in a negative way. That in itself makes it hard to gave good skin/haircare routines. I usually only wash my hair once a week because it's too draining to shower more. And I often go several days without brushing because I just don't have the energy.

On top of that I have very difficult type of psorasis, called palmplantar pustulosis. What it means, is that I get pus-filled (not bacterial or viral, other's can't get it from touching me) blisters on the palm of my hands and fingers, and soles of my feet. They burst and give me open sores. Often I have layers of thick dead skin on top, and then these blisters underneath. At my worst, my hands and feet were just big sores. When it's bad, I have to wear gloves (I wore gloves for over a year, every single day, never being able to touch my husband or cats), and trying to do my hair then... Hah. My husband had to wash and brush my hair for me. And also henna it for me. That's actually when I started growing it long, because the longer it was, the easier it was to just stuff it in a scrunchie to keep it off my face.

I just recently got approved for permanent disability, I've battled the system for three years since I haven't been able to keep up a normal work/study for almost eight years. It's a relief to finally get that approval. But that of course comes with it's own stigma, because (now that my skin is doing good), all my illnesses are invisble and alot of people are sceptical if I'm actually ill or not. Cause I'm always well dressed and groomed when I'm out in public, and I'm a lively social person. But they don't realize that it's the first time in two weeks I've left my apartment. Because I was doing too poorly to get out.

truepeacenik
March 24th, 2016, 05:35 PM
Hello :flower:

I am diagnosed with Autisme, heavy depression, hyposomny (constantly feeling alsleep, also when I drive a car) and I am highly sensitive. Can't find work because I work slower than another person because of (Googled this one, can't translate in English)problems with fine motor skills.

Just because I'm a word nerd, try a translation for "dexterity." Is that what you sought?

SparrowWings
March 24th, 2016, 06:14 PM
... And it's the same with monthly issues; she says sarcastically "Well, isn't that convenient?" implying that I'm making excuses just to get out of doing something. So one time I said angrily "No, it's not!" And then she says I'm overreacting. She's not a mean person, but she doesn't seem able to understand that my pain is real. :-(
Hormones suck, plain and simple. I used to get the same thing from my parents (and doctors, and anyone else who heard about it), but I think they finally got the idea when they realized that every month I had the heating pad turned up so high as to leave a heat rash on my stomach yet I couldn't even feel the warmth (much less feel it helping), and when the cramps actually made me throw up one month, and faint in the nurse's office two other months. The miserable things left me literally crippled from pain for the first 1-2 days every time for years; it took all the willpower I could muster just stand up and make it to the bathroom to deal with it.

That said, it's also been so much better it's almost a dream for the past several years. I will typically avoid medications at all costs, but eventually I gave in and went on birth control, and within a few months all I needed was a single Aleve, if that. Years later, it started giving me migraines, so I'm not on it anymore, but the benefits have very wonderfully remained. Being careful about food has also helped over the years. Specifically, pre-birth control, if I ate anything that first day, it magnified the cramps tenfold. If it was a good month, I might be able to manage a couple crackers without too much impact. Now, I have to eat that first day -- but I have to eat small, snack-sized meals, every hour or two, to maintain a very steady amount of food in my stomach, or the cramps come back. I also pointedly avoid anything cold, food or drink. Room temperature is ok, hot is better. Raspberry leaf tea is the best, because it has muscle relaxant properties (I think that's what it does, anyhow).

-----------------

Aside from that, I've definitely battled depression as well. Had I known it was a thing, there was a point where I probably could have gone straight into WO or even NW/SO, because I went so long without having the energy to deal with washing my hair (or even leaving my room, in fact). That same point also wound up with me nearly having one single massive dreadlock, because the braided ponytail had been in, unmaintained, for so long. Had my mom seen it when I finally got around to dealing with it, she probably would have cut it off. I spent at least a couple days, if not a week, getting the tangles out all the way up to the roots. My arms and scalp could only tolerate the effort and irritation/pulling for so long in any one sitting, especially when I made it to my nape! Ouch!

I've been doing a lot better lately. I've finally found a community (in person, not just online!) to be part of, and the feeling of actually belonging and being welcome is amazing. I still feel like I could slip back at any moment, but I am not currently back, and that's what counts! To those of you still struggling, hang in there! Use your good days to try and find out what magical thing can help pull you back up, and you'll get there! :grouphug:


ETA:

Yes! I have one hand, so braids and buns are less neat than I'd like. I manage alright, but new styles are much harder to learn, due to reach.
Also, that is impressive! I definitely never would have thought one-handed hair styles would be possible. How do you manage the three strands, or securing the bun, if you don't mind my curiosity?

Hairkay
March 25th, 2016, 02:37 AM
I've got allergy problems. I'm atopic so I've got eczema, hayfever and mild asthma. I'm allergic to soap, fragrances, dust, pollen, cleansing alcohols, some food colourings, a few fruits and some other food additives. That means I can't use soap of any kind on my skin and no shampoo. I also have to avoid make-up and manufactured hair products.

I have to have a skin care regimen with lots of emollients and careful use of a steroid cream for inflamed areas. I carry those little travel jars of cream around, one for use as a soap substitute and the other for a moisturiser to be use as soon as I've dried my freshly washed hands. I have limited use of one or two fragrance free mild detergents for laundry use or I use soapnuts. I use oat water to help relieve itching and olive oil for flaky scalp patches. For bad outbreaks I have to cream wrap and bandage the affected area overnight. I've even worn scratch mitts to stop scratching in my sleep.

People even family forget about my allergies and expect me to muck in with doing dishes if I'm a frequent visitor but they don't have gloves for sensitive skin to be used at all. Most times there's none at all. Sometimes I'd walk with my own but that gets to be too much. I already have numerous types of gloves at home for use with cleaning and cooking. I just step away when there's cleaning liquids to be used. I'd sometimes get comments about it. People think just this once a little exposure isn't going to hurt but it does end up itching and hurting for days, weeks and sometimes months later just from that one time. Plus all of this can add up. I hate it when they decide to save using disposable kitchen towel and have a soapy sponge or cloth to use which they try to hand to me. I'd be around and the just say "here, wipe this quickly before it gets worse!". I'd step back and decline. They'd step forward and insist. I'd have to decline again and explain that I can't be touching that bare handed. A look of annoyance usually follows.

My worse outbreaks were when I was teen. My hands had it so bad I could't write and had to miss a week of school. The steroid cream thinned my skin out so it ripped easily. I lost my finger prints for almost a year.

To add to the list my skin also reacts to water. Mostly its the temperature change. It begins to feel as if its burning painfully or I'm getting hundreds of insect stings starting at my ears, going over my scalp then my whole body. There's no rash or redness at all its entirely invisible. I'm managing it with prevention. Sometimes if I catch it early I can sooth the patch with some menthol cream and it may not spread to my whole body. I figured out my trigger was sudden temperature change. Baths/showers can't be too hot. Going in and out during autumn/winter and early springs causes problems. I use hooded clothing a lot because its my ears, neck and scalp area that gets it first. Using a hair salon would be absolute torture for me temperature wise and skin wise. I've seen it called aquagenic pruritus or water itch though to me it's not an itch but a stinging pain. The doc shrugs her shoulders now when I complain about it.

summergame
March 25th, 2016, 03:29 AM
Just because I'm a word nerd, try a translation for "dexterity." Is that what you sought?

Yes it is that but it's a bit more than only dexterity :-)

Wusel
March 25th, 2016, 05:29 AM
I've got allergy problems. I'm atopic so I've got eczema, hayfever and mild asthma. I'm allergic to soap, fragrances, dust, pollen, cleansing alcohols, some food colourings, a few fruits and some other food additives. That means I can't use soap of any kind on my skin and no shampoo. I also have to avoid make-up and manufactured hair products.

I have to have a skin care regimen with lots of emollients and careful use of a steroid cream for inflamed areas. I carry those little travel jars of cream around, one for use as a soap substitute and the other for a moisturiser to be use as soon as I've dried my freshly washed hands. I have limited use of one or two fragrance free mild detergents for laundry use or I use soapnuts. I use oat water to help relieve itching and olive oil for flaky scalp patches. For bad outbreaks I have to cream wrap and bandage the affected area overnight. I've even worn scratch mitts to stop scratching in my sleep.

People even family forget about my allergies and expect me to muck in with doing dishes if I'm a frequent visitor but they don't have gloves for sensitive skin to be used at all. Most times there's none at all. Sometimes I'd walk with my own but that gets to be too much. I already have numerous types of gloves at home for use with cleaning and cooking. I just step away when there's cleaning liquids to be used. I'd sometimes get comments about it. People think just this once a little exposure isn't going to hurt but it does end up itching and hurting for days, weeks and sometimes months later just from that one time. Plus all of this can add up. I hate it when they decide to save using disposable kitchen towel and have a soapy sponge or cloth to use which they try to hand to me. I'd be around and the just say "here, wipe this quickly before it gets worse!". I'd step back and decline. They'd step forward and insist. I'd have to decline again and explain that I can't be touching that bare handed. A look of annoyance usually follows.

My worse outbreaks were when I was teen. My hands had it so bad I could't write and had to miss a week of school. The steroid cream thinned my skin out so it ripped easily. I lost my finger prints for almost a year.

To add to the list my skin also reacts to water. Mostly its the temperature change. It begins to feel as if its burning painfully or I'm getting hundreds of insect stings starting at my ears, going over my scalp then my whole body. There's no rash or redness at all its entirely invisible. I'm managing it with prevention. Sometimes if I catch it early I can sooth the patch with some menthol cream and it may not spread to my whole body. I figured out my trigger was sudden temperature change. Baths/showers can't be too hot. Going in and out during autumn/winter and early springs causes problems. I use hooded clothing a lot because its my ears, neck and scalp area that gets it first. Using a hair salon would be absolute torture for me temperature wise and skin wise. I've seen it called aquagenic pruritus or water itch though to me it's not an itch but a stinging pain. The doc shrugs her shoulders now when I complain about it.

That sounds terrible... I feel your pain... I'm allergic to some stuff and have hayfever and a bit asthma too and I'm sensitive to temperature too... It's light and temperature. I can't stand warmth... I couldn't sleep last night because it was too warm in the room... Even in winter I sleep with open window... And the problem is: My skin needs cold but my body gets sick from it because the low temperature my skin needs ist too low for other organs so I end up with cystitis for example... Summer for me means: Cough from hayfever and asthma inhaler, staying inside and away from sunlight sitting in the kitchen in front of the open fridge... :D

PixieP
March 25th, 2016, 06:17 AM
To add to the list my skin also reacts to water. Mostly its the temperature change. It begins to feel as if its burning painfully or I'm getting hundreds of insect stings starting at my ears, going over my scalp then my whole body. There's no rash or redness at all its entirely invisible. I'm managing it with prevention. Sometimes if I catch it early I can sooth the patch with some menthol cream and it may not spread to my whole body. I figured out my trigger was sudden temperature change. Baths/showers can't be too hot. Going in and out during autumn/winter and early springs causes problems. I use hooded clothing a lot because its my ears, neck and scalp area that gets it first. Using a hair salon would be absolute torture for me temperature wise and skin wise. I've seen it called aquagenic pruritus or water itch though to me it's not an itch but a stinging pain. The doc shrugs her shoulders now when I complain about it.


I'm so sorry you have such people around you who's not supportive and understanding! :(

I react to water also. And even my own sweat. I get no visible effects on the skin, but after a shower, or a quick rinse of the hands, it feels like someone has poured acid on my skin, it stings and burns. So far *knocks on wood* I have not reacted to sea water, so I can go swimming in the summer. But lakes or swimming pools is a complete no-go.

Hairkay
March 25th, 2016, 06:28 AM
That sounds terrible... I feel your pain... I'm allergic to some stuff and have hayfever and a bit asthma too and I'm sensitive to temperature too... It's light and temperature. I can't stand warmth... I couldn't sleep last night because it was too warm in the room... Even in winter I sleep with open window... And the problem is: My skin needs cold but my body gets sick from it because the low temperature my skin needs ist too low for other organs so I end up with cystitis for example... Summer for me means: Cough from hayfever and asthma inhaler, staying inside and away from sunlight sitting in the kitchen in front of the open fridge... :D

It seems like summer is your worst time of the year, Wusel. Sometimes I'm grateful for light rain to help dampen down the pollen. I g uess you sometimes wish you had a spare skin to swap your sensitive one for. I have that wish sometimes. Since my skin is dark some don't notice when I have a rash outbreak. I couldn't touch something at a place I used to work at because there was soap on it. Then there was muttering that if that was the case I'd have a rash. I did but they weren't used to looking for it in dark skin. I've found that in some work places tolerances for those who must use different strategies because of physical problems grows shorter when there is increased pressure to perform more in less time with not enough workers. They treat it as is you're a malinger just because you have to add a few seconds prepare for each actions.

Wusel
March 25th, 2016, 07:35 AM
swimming pools is a complete no-go.

Same here. Chlorine = NO-GO.

Wusel
March 25th, 2016, 07:45 AM
It seems like summer is your worst time of the year, Wusel. Sometimes I'm grateful for light rain to help dampen down the pollen. I g uess you sometimes wish you had a spare skin to swap your sensitive one for. I have that wish sometimes. Since my skin is dark some don't notice when I have a rash outbreak. I couldn't touch something at a place I used to work at because there was soap on it. Then there was muttering that if that was the case I'd have a rash. I did but they weren't used to looking for it in dark skin. I've found that in some work places tolerances for those who must use different strategies because of physical problems grows shorter when there is increased pressure to perform more in less time with not enough workers. They treat it as is you're a malinger just because you have to add a few seconds prepare for each actions.

Yes... I actually hate summer... Fortunately it rains very regularly in Bremen so my breathing troubles and cough calm down here and there in summer but last summer we had a very long heat period without rain and that was terrible. Climate change... Bremen was always known for tons of rain and cloudy weather but we have more and more heat in summer and mild winters here... Bad for me...
I'd love to have a second skin to change for summer. Like a snake or a reptile or so... :D
In my next life I want to be a gecko. :D They're cute. :D And sun/heat-resistant. :D

lapushka
March 25th, 2016, 07:50 AM
you can say I am mentally disabled I have high-functioning autism too, anxiety and depression which I think affect my hair every day.
I pull my hair out (Trichotillomania) and pick on my scalp especially when I'm stressed. things have gotten too much better since I discovered LHC two weeks ago.
I am determined to have healthy long hair which may seem difficult sometimes ( I have bald spots that i am waiting for to regrow ) but I am going to enjoy my time waiting and try to overcome my urges.
lifes been really hard and everything else is falling apart I just want to make sure I am happy with something on me, my hair, even though it's not that perfect.
sorry if this seems passive.
we all have our struggles but the more challenges we manage to go through the more rewarding and happier we will be, won't we ?
also sorry for my not so good English.

Welcome to the site. :)

papayatree
March 25th, 2016, 06:54 PM
I don't know if this belongs here but I have urticaria solaris. Light allergy. So... That's why I have no pics of my hair color in the sun. I'm always afraid of summertime and spend the whole summer inside. But even in winter the light is too much.
I get sunburn after 30 second outside without SPF 50-100 and when sun touches my skin it hurts and burns. I wear sunglasses always and hoodies and hats... I feel disabled by this. You can't see it but I can feel it... And the worst thing is that people don't take it serious because it's so unknown until I hurt myself and demonstrate them by going out and coming back with sunburn. After only a minute..


This is really terrible, I only heard of this disease but never 'know' someone who have it... It is more worse because nobody knows anything about it..

I agree with you summer, I had always thought second of this horrible disease, until I found out one of my Friends on this Wonderful Website turned large Family, has it. I feel so sorry for you Wusel, I hope you find a way to enjoy the summertime without harming yourself. :flowers:

gwenalyn
March 26th, 2016, 01:39 AM
Yesterday I went with my SO to Hamburg and it's 1,5 hours car driving, one way. I had a thick layer of SPF 50 on (which isn't nice because high SPF always is greasy, shiny, white-ish, cakey on the face when you put powder over it...) and when we came home he said: "You're very red in the face..." Even inside the car with SPF 50... Not funny... In my apartment I have thick curtains and shutters everywhere...

Have you ever tried Asian (particularly Korean) sunscreens? I haven't used them myself, but I've heard that they are more "cosmetically elegant" because sunscreen is much more popular there. Supposedly they are less likely to have a white cast and be greasy. They also can contain more high-tech ingredients that aren't available in the US yet because of the FDA. I've been obsessed recently with a subreddit called skincareaddiction; they've got a lot of good info (https://www.reddit.com/r/SkincareAddiction/wiki/sunscreen_recs), maybe you could check that out? Hope it helps! :flower:

As for myself, I don't have it as bad as anyone else on here, it seems. Fairly severe asthma, allergies, and depression. It's all pretty well handled with medication, therapy, and exercise at this point, after a few years of trying!

emmadilemma
March 26th, 2016, 02:06 AM
I'm a disabled long haired princess. I battle my mental and physical health on a daily basis.

I tend to not have the energy to brush my hair everyday...it's horrible. I get splits to high heaven, and snarls and knots that really takes more energy to get out than brushing every day seems to take!

It's a vicious, vicious cycle.

I'm curious if there is anyone else here like that or if there are any threads that tackle the issues of maintaining long hair even when our chronic health issues start taking it's toll.

It doesnt affect my hair, but I was born with a clubfoot and the pain it causes me is the worst pain I've ever experienced - beats the worst cramps by a long shot. I cant run but I can walk short distances, theres alot of things it affects in my life. I also have major depressive disorder. From 15 to 18, I literally didnt leave my house, through the fault of depression, anxiety, paranoia and, as my friend coined it, 'being a shut in.' Depression took away my personal hygiene, I never had clean clothes and rarely showered. After I moved out of my moms house and into my grandmas house to take care of her, things got better. Getting away from abuse and bad things really enabled me to have a little wiggle room to feel better. So I got on depression medications (Although I've tried prozac and citalopram, the BEST medication for me is Wellbutrin. if you have any type of depressive disorder and it makes you exhausted all the time, talk to someone about Wellbutrin, its really good for depressives that have the effect of sleep issues. I went from sleeping at least 29 hours at a time (literally) to being able to wake up refreshed after 8 hours, I could eat healthy, shower and take care of myself, I even started drawing again. This is actually the reason I started getting into ways of taking care of my hair, Wellbutrin freed me from alot of the things that took me down and now being able to live somewhat normally I'm able to try new things- like alternative hair care. :)

Wusel
March 26th, 2016, 03:10 AM
Have you ever tried Asian (particularly Korean) sunscreens? I haven't used them myself, but I've heard that they are more "cosmetically elegant" because sunscreen is much more popular there. Supposedly they are less likely to have a white cast and be greasy. They also can contain more high-tech ingredients that aren't available in the US yet because of the FDA. I've been obsessed recently with a subreddit called skincareaddiction; they've got a lot of good info (https://www.reddit.com/r/SkincareAddiction/wiki/sunscreen_recs), maybe you could check that out? Hope it helps! :flower:

As for myself, I don't have it as bad as anyone else on here, it seems. Fairly severe asthma, allergies, and depression. It's all pretty well handled with medication, therapy, and exercise at this point, after a few years of trying!

Thank you :) :flower: I've tried sunscreens from skin79 and Missha some years ago. They are great but not always available in Germany unfortunately. But great you remained me of this, I've just found a shop which carries Missha and Skin79. :)

Wusel
March 26th, 2016, 03:14 AM
I agree with you summer, I had always thought second of this horrible disease, until I found out one of my Friends on this Wonderful Website turned large Family, has it. I feel so sorry for you Wusel, I hope you find a way to enjoy the summertime without harming yourself. :flowers:

Thank you :flower: :flower: I'm mentally prepared for the summer and hope for big clouds and lots of rain. :)

Wusel
March 26th, 2016, 03:19 AM
It doesnt affect my hair, but I was born with a clubfoot and the pain it causes me is the worst pain I've ever experienced - beats the worst cramps by a long shot. I cant run but I can walk short distances, theres alot of things it affects in my life. I also have major depressive disorder. From 15 to 18, I literally didnt leave my house, through the fault of depression, anxiety, paranoia and, as my friend coined it, 'being a shut in.' Depression took away my personal hygiene, I never had clean clothes and rarely showered. After I moved out of my moms house and into my grandmas house to take care of her, things got better. Getting away from abuse and bad things really enabled me to have a little wiggle room to feel better. So I got on depression medications (Although I've tried prozac and citalopram, the BEST medication for me is Wellbutrin. if you have any type of depressive disorder and it makes you exhausted all the time, talk to someone about Wellbutrin, its really good for depressives that have the effect of sleep issues. I went from sleeping at least 29 hours at a time (literally) to being able to wake up refreshed after 8 hours, I could eat healthy, shower and take care of myself, I even started drawing again. This is actually the reason I started getting into ways of taking care of my hair, Wellbutrin freed me from alot of the things that took me down and now being able to live somewhat normally I'm able to try new things- like alternative hair care. :)

After all what you are through I'm so happy you feel better now. :joy: :grouphug: :flower:

MasCat
March 26th, 2016, 05:34 AM
I don't have any disabilities aside from the classic short-sightedness. I did therapy which helped me wifh my depression (thoguh I was actually dealing iwth other stuff, not treating the depression specifically).

I just wanted to say that it's a wonderful thing to see so many people posting in this thread. I think LHC needs it. Also it's ery interesting, reading about how long hair affect you all and helps some of you with your condition.

Love and hugs everyone!

lapushka
March 26th, 2016, 05:54 AM
Well, we never have much of a summer in these regions (Belgium, N of France, Germany), so... let's hope it's not going to get too hot, Wusel.

For the rest, anyone with a disability find it reassuring to find some distraction in the internet, and from forums like this? It's like my "hobby". I don't have much else, TBH. It provides me with distraction from the pain mostly.

PixieP
March 26th, 2016, 08:04 AM
Today I had the fun dilemma: How to hurt the skin on my feet the less? My psoriasis have been building up and the dead skin has gotten really hard, and creams and ointments don't soften it enough. So it was time for a footbath. But, as my skin also HATES water, that's not a fun thing. I either live with hard dead skin that cracks the skin underneath so I get open wounds, or I feel like I've stuck my feet in acid for five hours afterwards.

Husband recently bought me a thingie from Lush for footbaths, so I figured I'd try it. It's been months since my last footbath and I really should do them twice a week to keep the skin soft. The Lush thingie really helped on my skin reacting to water though, it was only a mildly unfomrtable tingle on my skin, not full out burning. So yay for that!

Now I really should wash my hair tonight, it's overdue by about two days, but all the worrying about to footbath or not has me exhausted. My husband is out doing errands and I'm starving, but I'm so exhausted I can't even find the energy to get up from the couch, walk into the kitchen, and make some food. So I think hairwash will have to wait until tomorrow... Then I REALLY gotta do it though, cause we're going to the cinema in the evening and my hair is so greasy and nasty.

librarychick
March 26th, 2016, 12:54 PM
It seems like summer is your worst time of the year, Wusel. Sometimes I'm grateful for light rain to help dampen down the pollen. I g uess you sometimes wish you had a spare skin to swap your sensitive one for. I have that wish sometimes. Since my skin is dark some don't notice when I have a rash outbreak. I couldn't touch something at a place I used to work at because there was soap on it. Then there was muttering that if that was the case I'd have a rash. I did but they weren't used to looking for it in dark skin. I've found that in some work places tolerances for those who must use different strategies because of physical problems grows shorter when there is increased pressure to perform more in less time with not enough workers. They treat it as is you're a malinger just because you have to add a few seconds prepare for each actions.

I don't have much to add, but I definitely sympathize with not being believed or others thinking that you're shirking at work. I've got asthma, but very few things trigger it - cold (-20C and I have to wear a scarf or risk developing bronchitis), cigarette smoke, heavy exercise, and some perfumes/chemicals. Since it's usually such a non-issue for me I've had friends think I was faking or exaggerating when I got a coughing fit during some exercise class, and when I worked at Starbucks I couldn't clean the oven due to the chemicals used. The manager believed me about the oven, but she was the one who tried to train me on how to clean it. I had to actually leave the store before i could stop coughing enough to breathe. The other staff though I was faking, and made fun of me for not going near the oven when it had the chemicals in it, or holding my breathe and walking past as fast as possible.

I herniated a disc in my back two years ago, and I've been extremely lucky that it's healed as well as it has. I still have numbness in my foot, ankle, and calf on that side but the nerve pain is mostly gone. I'm going to try a new physio this week and hopefully I'll be able to get some feeling back. I've found that my body is compensating, and not trusting my left foot - so my left leg is very tight, and my right hip is sore from trying to cover for it. But I'm still mentally grateful every day. There was a long period of about 6 months where I couldn't sleep and could barely walk. No one knew if I'd improve or not, and nothing they gave me helped with the pain. Finally I started to improve, and now I've got my mobility back, but it was slow and a very difficult process. I can easily see how hard it would be to be in that position for life, and how easy it is to become depressed because of it. I certainly had those days myself.

The big thing I've learned is to believe someone when they say they're sick, hurt, or in pain and to just take it at face value. I believe them when they tell me what they can or can't do, and try to give sympathy or help as best I can. I HATED having people not believe me, or think I was faking because I was 'too young for it to be serious'.

Anyways, *hugs* to everyone, and support.

languagenut
March 26th, 2016, 04:27 PM
I definitely second that, librarychick, about believing people at face value. It's one thing if it's a little kid saying "I'm too sick to eat my green beans; I can only eat dessert!" and the like, where it's obvious they're faking it. But otherwise, I believe that it's better to believe someone and risk being taken advantage of, than to not believe someone and risk causing them more hurt. It's hard sometimes to see outside our own perspective of reality; "I'm fine, how could you not be fine?"; but it's very important to all our human interactions.

sp00ky
May 16th, 2016, 01:26 PM
Oh my, this is such a great thread! I have multiple mental and physical disorders that make it hard to style or do much of anything to my hair. Degenerative kyphosis and scoliosis, shoulder and neck pain, bpd, ptsd, depression. Brushing and massaging my scalp is challenging, and I can't hold my arms up to do it for too long. I had been growing my hair from a pixie cut in dec 2011, made it to a bit past BSL last year. It was really scraggly and damaged from coloring it constantly, so I cut it to shoulder length. Now I am back to growing it and this time I am not using any color on it, besides a vegetable based stain sometimes. I have fine hair, so it get tangled and damaged so easily. I would love to make it to my goal of waist, and then tailbone. I am happy and sad to see so many other disabled beauties in here, we are strong and valid!! <3

librarychick
May 16th, 2016, 01:53 PM
I definitely second that, librarychick, about believing people at face value. It's one thing if it's a little kid saying "I'm too sick to eat my green beans; I can only eat dessert!" and the like, where it's obvious they're faking it. But otherwise, I believe that it's better to believe someone and risk being taken advantage of, than to not believe someone and risk causing them more hurt. It's hard sometimes to see outside our own perspective of reality; "I'm fine, how could you not be fine?"; but it's very important to all our human interactions.

Yup. A friend of mine is in the process of trying to get diagnosed with ehlers danlos (sp??). She's in her 30s, and has had 'weird joints', pain, and issues surrounding that her whole life. Even the friends we have who know her and that she's trying to get diagnosed don't take her seriously when she says she can't do something. Including 3 people we know in medical fields! She's had two doctors who didn't bother to do any testing, just told her she can't have ED because it's too rare...but they didn't do ANY testing and couldn't give her an alternate diagnosis. It's ridiculous. To me, it's obvious she's in pain and that she tries her best to minimize her symptoms, but she also has to plan ahead - she has a lot of pain and if she overextends herself one day she'll pay for it the next. Since she can't get on disability without a diagnosis, she has to work no matter if she's having a bad day or not.

The idea that young people can't be sick or hurt is so frustrating to me. Do these people think I don't want to be better? Do they think I, or my friend, enjoy not being able to do things? I would LOVE to have a healthy and strong body, it would make my life so much easier. Even from the place where I am now - much improved - I still always have to be mindful and careful, since a herniated disc doesn't ever go away I'm always at risk of reinjuring myself.

Anyways... /rant. Sorry, I was at a batchelorette party this weekend, and despite how great my friends typically are I became frustrated with their lack of understanding for the girl who likely has ED. I get they 'just wanted to have fun' and that pain and disease can be a downer...but it was apparent to me that she was trying her best to participate and I was in that exact position at a batchelorette party last year. (I definitely couldn't dance or do the fun burlesque class last year...but I wished I could have. Sitting out of dancing wasn't 'being a downer' it was 'I can't stand up anymore tonight')

PixieP
May 16th, 2016, 02:09 PM
Tomorrow is our national day and I've spent a lot of time today trying out new hairstyles to wear tomorrow. And now due to my fibro my arms and shoulders are horribly painful, and frankly I'm worried if I'll even be able to lift my arms to even get dressed tomorrow, let alone do my hair and make-up.

Qz
May 16th, 2016, 02:27 PM
I've had long periods of chronic pain more or less since I was in my very early 20s and had a back injury. In 2001 I had surgery that fixed my herniated disc, and was pain free for a few years when I guess my back finally just pretty much decided it was shot. Now I have intermittent periods where I do have sciatic nerve pain again, and it can last anywhere from a day or two to several months at a time. I have to take things slower when it's acting up, and it does hurt, but I thankfully can manage pretty well in spite of it.

I used to take meds for it, but decided a long time ago I wasn't getting any benefit out of the pain meds that just made me feel stupid and dull, and not care that I hurt, so now I just manage the pain by using heat on the area which actually seems to help me more than anything.

The only way it really affects my caring for my hair is on days when my back is acting up badly, I don't wash, since I normally lean over to wash it in the sink. I just wait until the back behaves enough, and do it then. Luckily now that I'm getting older and am not oily any more, I can stretch a week to two between washes if I just wash & fluff my bangs in between washing the rest of it.

Because of this I guess, I have a lot of sympathy for people who have "hidden" injuries or disabilities, as people can be very judgmental when it's not possible to see the actual injury or condition.

Ponymad21
May 16th, 2016, 03:11 PM
I'm disabled but it's mental not physical, my depression can make me bed bound where my hair just stays lose

nekosan
May 16th, 2016, 03:30 PM
No physical disabilities (*knock on wood*) but a number of mental health issues. If i can't deal/an in a bad place, i just keep my hair in my nighttime two braids all day. I still try to brush it out/rebraid in the morning and evening, or at least once a day, tho sometimes that falls to the wayside and i get tangles all over my scalp. I tend to be oily; things look nasty after two days not washing, and it gets really itchy about five days not washing. The itchies are usually what gets me to at least take a shower.

I'm, uh, really talented at not leaving the house for any reason. In college, i would pat some water on my head to hide wispies and do one braid. If you wear your nicest clothes, people tend to overlook that the rest of you looks horrid - at least, that's my strategy.

quirkybookworm
May 20th, 2016, 05:47 PM
I have Ehlers Danlos syndrome which mostly, for me, effects my shoulders and fingers. This makes holding my arms up long enough to do anything with my hair a challenge. Also, my fingers have a tendency to partially dislocate when doing the intricate movements that are needed for a lot of hairstyles.
I also have Meniere's disease which makes washing my hair difficult as I get extremely dizzy while doing so. On top of those two things, I've also fought with anxiety and depression. I once went through a period where I didn't comb my hair for 2 weeks, or wash it for 5 because I couldn't drag myself out of bed despite my best efforts.

I've read through all of this thread, and I saw a couple of people who mentioned having EDS and lapushka said she had Meniere's as well. Several of you also suffer from the beasts that are anxiety and depression. I just can't believe that there are other people on LHC who have the same things that I have. As silly as it sounds, I thought that I was the only one. I started tearing up earlier, as I was reading the thread, because it's just really amazing to see a group of people share their experiences and support one another. I just wanted to express my gratitude to the person who created this thread, and also for all of the people who've spoken about their struggles. My heart goes out to all of you :grouphug:

lapushka
May 21st, 2016, 05:58 AM
I also have Meniere's disease which makes washing my hair difficult as I get extremely dizzy while doing so. On top of those two things, I've also fought with anxiety and depression. I once went through a period where I didn't comb my hair for 2 weeks, or wash it for 5 because I couldn't drag myself out of bed despite my best efforts.

I've read through all of this thread, and I saw a couple of people who mentioned having EDS and lapushka said she had Meniere's as well. Several of you also suffer from the beasts that are anxiety and depression. I just can't believe that there are other people on LHC who have the same things that I have. As silly as it sounds, I thought that I was the only one. I started tearing up earlier, as I was reading the thread, because it's just really amazing to see a group of people share their experiences and support one another. I just wanted to express my gratitude to the person who created this thread, and also for all of the people who've spoken about their struggles. My heart goes out to all of you :grouphug:

Yes, I have medication which has it pretty much under control (Betahistine, Dytenzide, and a tiny dosage of Sulperide). It's been a while since I got dizzy and lost my balance (with the ear trouble that goes with it, full ear, sounds). I have to take the medication because due to the CRPS I can't lose my balance (my legs are very wonky as it is).

Llama
May 21st, 2016, 11:35 AM
Deleted (deleted)

quirkybookworm
May 21st, 2016, 08:06 PM
lapushka, I wasn't treated or diagnosed until almost 6 years after my symptoms first appeared, and so I learned how to cope semi-well on my own. I'm fortunate to have attacks that are spaced fairly far apart, and can kind of get away without taking medication for right now. I'm a bit of a medicine-phobe after a really bad allergic reaction that I had as a kid. However, I'm happy for you that you've found a treatment regimen that works for you. I know that it must be incredibly difficult to deal with a balance disorder on top of a condition that affects your legs. :blossom:

Llama, that sounds so awful -- I'm so sorry that you've had to endure that. I started experiencing symptoms very young, too (11 or 12-ish). No one in personal life has a balance disorder, and while I'm happy for them that they don't have to deal with it -- it can definitely get lonely. So, I can really relate to feeling isolated. :heartbeat

lapushka
May 22nd, 2016, 03:55 AM
lapushka, I wasn't treated or diagnosed until almost 6 years after my symptoms first appeared, and so I learned how to cope semi-well on my own. I'm fortunate to have attacks that are spaced fairly far apart, and can kind of get away without taking medication for right now. I'm a bit of a medicine-phobe after a really bad allergic reaction that I had as a kid. However, I'm happy for you that you've found a treatment regimen that works for you. I know that it must be incredibly difficult to deal with a balance disorder on top of a condition that affects your legs. :blossom:

On top of that, I kept having "attacks" whenever we had to wash my hair (bent-down), so at first and for a long time the ENT thought it was positional, and a lot of time was wasted. That's why I had a whole length of time where I only could get my hair washed every 2 weeks (it was that difficult). And still, every 2 weeks it just HAD TO be washed, it was that gross (coated to my neck with sebum). My dad had to be there on top of my mom because my mom barely weighs 50kg and can't hold me steady even when I "just" fall off of a chair. These attacks are violent and you just turn to the side and fall in an awkward way. But I do recommend an ENT. They did a slew of tests on me and checked my nose cavity and everything.

It's worth it getting it checked out further! :flower: I promise you! And because you once reacted badly to something doesn't mean you have to react badly now.

Creaky_Girl
August 7th, 2016, 12:15 PM
I have Ehlers Danlos syndrome which mostly, for me, effects my shoulders and fingers. This makes holding my arms up long enough to do anything with my hair a challenge. Also, my fingers have a tendency to partially dislocate when doing the intricate movements that are needed for a lot of hairstyles.

Oh! Me too! I have EDS III and it affects most of me - but hands, hips, spine, ribs and knees are worst. I have trouble with braiding sometimes because my proprioception (awareness of where bits of you are in space) is so poor, I don't know what my fingers are doing if I can't see it! I also can't wear my little finger splints which stop the partial dislocations when I'm braiding as the hair gets tangled up in them so for a long time my hair has just lived swirled up in a clip. Easy and fast!

I also have lots of associated conditions that like to hang out with the EDS - constant dizziness and gastro issues as well as fibromyalgia, raynauds syndrome (where the ends of your fingers go blue and numb) anxiety/depression and lots of autonomic wonkiness, where my temperature control and heartrate go a bit mental for a while. If I get too hot I often faint, but my definition of "too hot" can be quite cool. If I spend too long in the shower I can feel quite ill and fainty, which is tricky with long hair. I've managed to stretch my washes out to about a week now with the assistance of dry shampoo the last day or so and I do it at the when my other half is about and I can lie down after as it's exhausting.

Wouldn't swap my long hair for short though, even though I wonder if it might be easier!


I've read through all of this thread, and I saw a couple of people who mentioned having EDS and lapushka said she had Meniere's as well. Several of you also suffer from the beasts that are anxiety and depression. I just can't believe that there are other people on LHC who have the same things that I have. As silly as it sounds, I thought that I was the only one. I started tearing up earlier, as I was reading the thread, because it's just really amazing to see a group of people share their experiences and support one another. I just wanted to express my gratitude to the person who created this thread, and also for all of the people who've spoken about their struggles. My heart goes out to all of you :grouphug:

I second this - I thought I might be the only person - particularly with Ehlers Danlos - on here, and it's such a relief to find other people manage too! (I am definitely not relieved you all have problems, it's just nice to not be alone!). Hope you are all doing as well as you can at the moment!

eadwine
August 7th, 2016, 01:39 PM
Trust me, there are much more people with EDS than you may think :) A friend of mine has EDS, the daughter of a client's neighbor has EDS, as does her son. It is much more common than most people think, it just doesn't get diagnosed properly yet.

Myself, I don't have it, but I AM hyper-mobile. Just not enough to get diagnosed with EDS. I have joint pains at times, but nothing to the extent that things need to be looked at and diagnosed, though I do remember one time I had to take a drug that also would be prescribed to people with fibro, and I was pain free during that time.

It's a guessing game. When it gets worse or starts bothering me then I will find my way down the long winding road of medical research :lol:

I am glad the splints are helping, bummer they are getting tangled up with the hair.

But you're not the only one, you're not alone. :) Just us folks don't speak up a lot ;) At least that is what I notice. I am one, I don't want to whine ;) and I guess it's the same way for others as well :)

Tosca
August 7th, 2016, 07:24 PM
I have hypermobility and assorted psychiatric disorders. I think my hypermobility is why my shoulders get sore so quickly when I'm doing my hair. If I press the ball of my upper arm bone (humerus) my shoulder will easily subluxate. I stopped my dance classes at the start of this year to focus on my studies, and I have noticed that I get a lot more weird achiness and general muscle tiredness now, a bit like having the flu without the respiratory symptoms.

Since I finished my course last month, I plan on starting dance classes again in the next week or so. Hopefully once my muscles are back in condition and are better able to support my joints, the weird achiness will go away. If I am doing something that requires me to bend over for a long time, my back also gets sore and feels somehow unstable. If that happens, I put on one of my corsets to stablise my back and stretch out my tight muscles and I feel much better.

Jadestorm
August 8th, 2016, 03:41 AM
I too have severe medical problems and have gotten the label 'disabled'. Luckily, I'm still able to wash and maintain my own hair, quite well, so no big issues there. I only wash my hair once a week and I do it on a moment where I feel up to it.
Unfortunately my hair has been breaking off and falling out for a while now, due to my poor health. Despite that, it actually looks pretty healthy and I'm not losing big chunks at once, so so far you can't really see it. (although I do see and feel how it's less full of course). As for doing nice looking braids and updos, I don't bother too often as I don't have the energy and nobody sees it anyway as I hardly ever leave the house or see people, so I might as wel do a simple and comfortable low braid ;)
I put in an extra effort on filming days or moments where I feel a bit better and leave the house, but even then I usually go for styles that don't take too much energy. Things I'm used to or things that LOOK complicated -but aren't- are my favorite.

Tassledown
August 9th, 2016, 03:56 PM
This is a great thread to have, thank you OP! I've got probably a fun selection of things but not enough medical care/executive function to get it diagnosed. I manage pretty well, but it was actually deciding to take better care of my hair that sorted out my bad habit of skipping showering for too long. Now that I don't brush it out except when in the shower, it reminds me to do so whenever my hair starts to frizz too badly. Headscarves help when I realize I'm at that point but can't quite bring myself to do it, or on days like today when I'm too exhausted to put it up properly otherwise.

I think most of my exhaustion is allergy/gastro-intestinal issues. AFAIK I have celiacs (been off wheat too long to get the blood test/biopsy, refuse to go back on to verify it that way, so I have to talk someone into the genetic test and haven't managed to yet.) and that's been a challenge and a half to manage. A couple other things send my digestion off too, including hormones, so it's... fun. I work it out.

All my love and support to the rest of y'all! We all deserve a little pleasure in our lives and hair might as well be it.

Cg
August 10th, 2016, 09:37 AM
We all deserve a little pleasure in our lives and hair might as well be it.

Absolutely!

Creaky_Girl
August 11th, 2016, 08:04 AM
All my love and support to the rest of y'all! We all deserve a little pleasure in our lives and hair might as well be it.


Absolutely!

I second that!!! :) It's the thing that makes me most happy about me :)

AliceRuth
December 26th, 2016, 04:01 PM
Me! Another EDSer. :)

JillRenee
December 26th, 2016, 06:16 PM
I'm a disabled long haired princess. I battle my mental and physical health on a daily basis.

I tend to not have the energy to brush my hair everyday...it's horrible. I get splits to high heaven, and snarls and knots that really takes more energy to get out than brushing every day seems to take!

It's a vicious, vicious cycle.

I'm curious if there is anyone else here like that or if there are any threads that tackle the issues of maintaining long hair even when our chronic health issues start taking it's toll.

Thank you for starting this thread; what a great idea. Has anyone mentioned yet how social isolating living with one or more disabilities can be? This has been the case with me. My left hip and pelvis was injured badly in a car accident 16 years ago, and I developed severe arthritis and chronic pain. Losing my husband after his long illness threw me into a cycle of grief and challenged me in every way.
I post very, very seldom, but I check this site almost every day. I had to respond to this wonderful thread to stop my habit of lurking. Time to stop being so passive and express my thanks for the joy you all have brought me through such a dark sad time in my life. TLHC has made a great difference in my everyday life by teaching me new positive habits in health and beauty. I have become more mindful of my nutrition and the medicines I ingest. You all have taught me so much about caring for my hair and scalp. Also the importance of protective styles and how to wear my hair up. I feel that focusing on taking care of my hair has helped fight off depression. It is one of the things I do to keep myself busy. Noticing that my hair has recently started growing after it took a break has also improved my mood.
My physical disability makes it harder to find the time for hair care routines. I move slower than most people my age and everyday activities take much longer. I try to multi-task when I can to save time. Sometimes we have to be kind to ourselves and accept the things we can and can't do. Those days, so we don't rip through our fragile hair, a messy top-knot bun may be our best friend. At least until tomorrow morning, when we may have time to do better.

RavenRose
December 26th, 2016, 08:06 PM
Wow, so many here in this thread have many challenges. I feel for you all!

I am not officially disabled, but do deal with several issues that can make some days challenging. I have moderate Fibromylgia, which is chronic nerve pain issues, migraines, Poly-cystic ovaries, seasonal depression, many food and chemical sensitivities, along with suspected chronic fatigue and IBS. I am on birth control, high vitamin D dose, and a low dose of Topmamax which makes most days manageable as long as I follow a diet free of my known sensitivities, pace myself, keep the chemicals out of my home, keep myself warm, and make sure I get enough sleep.

I recently had to walk away from a high paying job because it was to much for me to handle. I am a fostering my almost 2 year old goddaughter, and raising our 12 year old son, and have a small income sewing medieval garments, plus have livestock, and some days all I manage to do is take care of the toddler. My husband doesn't understand completely, (although recently cut some of his nerves on his thumb, so is understanding better) but is generally supportive, and will take care of the things around the house that I was unable to get too.

I do come here often as a distraction from the pain/fatigue. I do lurk more often than I post, but I have found great comfort in this forum here.

Aphra
December 26th, 2016, 08:16 PM
Me! Another EDSer. :)

*Waves* and another one. Plus various of its secondaries. There is some debate whether I also have ME/CFS or if the EDS diagnosis replaces that. I'm not sure it matters.

The main hair issues caused are not being able to braid behind my head - I can't hold my arms there for long and I can't do it if I can't see - which rules out a lot of common styles. But having now dealt with effectively with (rather longer term than I originally realised) secondary depression and anxiety, I like having hair that makes me happy, which currently means longish and multicoloured. The long component doesn't cause me any problems yet, but I am planning on stopping around waist for practicality of handling with wobbly arms.

AliceRuth
December 27th, 2016, 02:58 AM
I have a whole bunch of other issues (both physical and mental) that may or may not be related to my EDS, and I have Aspergers. Yay. Not a great combo, really. I'm somehow managing, some days better than others, but I get the whole 'you're too young to be that sick' thing quite a lot (where I live there are loads of older people who don't understand). That's really trying.

My most problematic area is my shoulders; they dislocate as I sleep, never mind doing anything else, so I don't know how I'm going to go on at longer lengths. The floppy shoulders give me an advantage in reaching behind my back, though, so that may be helpful; it's difficult right behind my head, but the further I get down, the easier it becomes. I'm floating between BSL and waist right now, and I've got to the point where my hair is getting caught in all the bits on the top of the back of my wheelchair, I hated it already, and now it's trying to eat my hair. I'm really not liking it. Frustrating, but I suppose it's going to force me to try out new ways to keep it out of the way securely!

It's nice to know that there are other people here who sorta get it. Well, it's not nice that you've all got these things, but it's good that we've got each other :)

Aphra
December 27th, 2016, 05:57 AM
Shoulders are, if I may use a scientific term, utter *!!@**?*s. I'm lucky compared to a lot of EDS'rs in that my joints amble around in the vicinity of the socket rather than fully dislocating, so they hurt a lot but largely remain functional. But shoulders are definitely a nemesis. Along with ankles and my jaw joints, all of which I consider a sad mistake in construction.

It sounds like our hair is a similar length - when I need a wheelchair, I bundle my length up and pull it over one shoulder so the back can't eat it.

pinkprincess
December 27th, 2016, 08:53 AM
I have lupus, fibromyalgia, ME and generalised anxiety disorder and depression. I have neuropathy too so also have difficulties practicing braiding etc. I also had an eating disorder and am probably going to take several years yet to repair all the damage. I don't know if my hair will grow long without too much damage this time because these conditions all affect it. Does anyone find that?

Kae612
December 28th, 2016, 10:20 PM
I don't know about eating disorder hair damage, but I had very bad trichotillomania (anxiety induced compulsive hair pulling) as a kid/teen and usually had large bald patches from about age 11-17. I was really lucky that my hair mostly bounced back from that, with some sparser areas on the back that just look like a widened part. The texture changed drastically (it used to be very wavy and extremely thick and now is just on the average/thick border and fairly straight at 1c). But I have hair, it grows, and I can have fun with it. I think it is something that can come back from a lot, so I wouldn't give up on retaining your hair's health, pinkprincess :)

I have found researching hair/doing my own hair to be extremely soothing and comforting w/re: my generalized anxiety. I can really zone out and focus on the task of putting my hair in a bun, a new bun, a new style, a style I'm making up and it can a) get me out of bed/an obsessive funk, and b) give my brain a well-needed break that sometimes not even sleep can give me from worrying. It makes me very happy to have found this this year. I struggle with hygiene sometimes when I am very down and I will go without washing my hair for weeks. I think 3 weeks is my record. But wanting to try new hair things, a new shampoo/conditioner/routine is such a motivator to keep it clean once a week.

Someone asked earlier in the thread about hairstyles for when you need to leave it alone for several days, and I recently had a 2 week flu where I did very little, and I had watched a Torrin Paige video that mentioned two french braids as a good style for when you're in the hospital/sick. I used Dutch because I find them easier to sleep on, and I left them in for about a week, though I did redo the ends a little with the fraying, it didn't knot nearly as badly as the single french braid I happened to spend 4 days in because that's how my hair was when I caught the flu.

PixieP
March 25th, 2017, 01:21 PM
I've been doing quite bad lately. My depression had a major flare-up in November and I'm still dealing with that. From Christmas until now my energy levels have slowly become worse and worse (and they were not good to begin with, I have fibromyalgia which gives me chronic fatigue). And since I managed to get an inner ear infection I've had to take antibiotics and stop the meds I take for my psoriasis (I cannot take that when I have an infection). So now my joints are acting up and my skin is acting up and my nails are getting worse. And these things all combined makes it very hard to care for my hair properly. I don't have energy to detangle properly every day, so sometimes my hair goes from topknot sleeping bun to lower cinnabun in the daytime, up in a topknot for a nap in the middle of the day, down into a cinnabun, and then up in a topknot again for bedtime, several days in a row without brushing or detangling in the meantime. Guessing that's not good... I don't have too many tangles when I first detangle most of the time though.

It's also really hard for me to wash my hair. My skin is allergic to water, so I shower as little as possible (once every month, no I don't stink, I wash with a cloth where it's needed). So I wash by bending over into the shower and washing my hair upside-down. That is very painful for my body to do, and requires a lot of mental and physical energy. I need to plan a whole day for it, because I won't be able to do anything else that day, I'll be too exhausted.

I'm also very lonely lately. I have very little family, especialliy living here, and no close friends nearby. Usually I only get out the door for doctor or psyciatrist appointments nowadays.

mindwiped
March 25th, 2017, 02:06 PM
Wow, so many here in this thread have many challenges. I feel for you all!

I am not officially disabled, but do deal with several issues that can make some days challenging. I have moderate Fibromylgia, which is chronic nerve pain issues, migraines, Poly-cystic ovaries, seasonal depression, many food and chemical sensitivities, along with suspected chronic fatigue and IBS. I am on birth control, high vitamin D dose, and a low dose of Topmamax which makes most days manageable as long as I follow a diet free of my known sensitivities, pace myself, keep the chemicals out of my home, keep myself warm, and make sure I get enough sleep.

I recently had to walk away from a high paying job because it was to much for me to handle. I am a fostering my almost 2 year old goddaughter, and raising our 12 year old son, and have a small income sewing medieval garments, plus have livestock, and some days all I manage to do is take care of the toddler. My husband doesn't understand completely, (although recently cut some of his nerves on his thumb, so is understanding better) but is generally supportive, and will take care of the things around the house that I was unable to get too.

I do come here often as a distraction from the pain/fatigue. I do lurk more often than I post, but I have found great comfort in this forum here.

I feel like if I just swapped a few words you could have written my post. I'm a cyster (PCOS girl),with chronic migraines, environmental allergies, early onset arthritis (likely EDS, I just need to go do the genetic testing). I'd been on the pill until I developed blood clots, I'm looking into a hysterectomy to cope.I couldn't handle the twelve hour shifts, so I took a huge pay cut, so that I'm working a more typical, five eight hour shifts per week. At least all my lab work is free, since I work for a lab company. Hubby doesn't understand how tiring the chronic pain can be, even though he's got multiple health issues (celiac with IBS-D, a migraineur, and legally blind).

If you sell your faire ware on etsy, could you please pm me your shop? I've been looking for some sort of outfit, and if I can get what is want AND help a fellow lhc person with physical struggles out, that would be amazing!

hayheadsbird
March 25th, 2017, 02:08 PM
((PixiP))
Save the spoons as much as you can. Xx

*Seraphina*
March 25th, 2017, 02:09 PM
:grouphug: for all of you!
PixieP is it a option to let your hair washed by the hair dresser once in a while? Just a idea that popped into my head, hope you don't mind :flower: I hope you feel better soon.

marvel-lover
March 25th, 2017, 02:19 PM
I'm not sure if I fit in here or not. I had an eating disorder for 6 years that ended with me being 21 and having onset osteoporosis. I also have arthritis in all of my lower joints, walk with a permanent limp because I shattered my foot several years ago and have more metal than bone in it now. More than that, I am a MRSA carrier; I contracted it and almost died last year, and spent wonderful weeks in the hospital (sarcasm). Now I have a disfigured leg and flare ups every now and again that make walking even more difficult. All of these make it difficult for me to stand long enough to care for my hair when I have pain greater than the typical.

Mentally, I have a panic disorder, anxiety disorder, PTSD, bipolar II disorder and some OCD traits. Quite a laundry list! I don't neccessarily consider myself disabled but all of these present challenges to my daily life, and hair care.

pandabarrier
March 25th, 2017, 03:27 PM
PixieP hope you feel better. Hang on!

lapushka
March 25th, 2017, 04:10 PM
A hug to everyone who can use it! :grouphug:

It's not easy here either. My legs are both affected. I'm not paralyzed, but my legs barely function. So I get my hair washed sitting down on a bar stool at the sink (this is so I can bend down more easily over the sink). It's not ideal, but it has to happen. Better now that I can get it done once a week instead of 2/3 times a week. And because I have the same kind of thing (CRPS) happening in my shoulder/arms, my mom helps me wash my hair. We tried it over the tub, but that was a little awkward, I would have to get in half seated with my legs wet. Not ideal.

PixieP
March 25th, 2017, 06:13 PM
((PixiP))
Save the spoons as much as you can. Xx


PixieP hope you feel better. Hang on!

Thank you dearies *hugs*


:grouphug: for all of you!
PixieP is it a option to let your hair washed by the hair dresser once in a while? Just a idea that popped into my head, hope you don't mind :flower: I hope you feel better soon.

I actually hadn't thought about that, but maybe I should check prices, see if I could do that once in a while. It would be a nice small luxury :) Thank you for the suggestion!


I'm not sure if I fit in here or not. I had an eating disorder for 6 years that ended with me being 21 and having onset osteoporosis. I also have arthritis in all of my lower joints, walk with a permanent limp because I shattered my foot several years ago and have more metal than bone in it now. More than that, I am a MRSA carrier; I contracted it and almost died last year, and spent wonderful weeks in the hospital (sarcasm). Now I have a disfigured leg and flare ups every now and again that make walking even more difficult. All of these make it difficult for me to stand long enough to care for my hair when I have pain greater than the typical.

Mentally, I have a panic disorder, anxiety disorder, PTSD, bipolar II disorder and some OCD traits. Quite a laundry list! I don't neccessarily consider myself disabled but all of these present challenges to my daily life, and hair care.

Of course you fit in :) *gentle hugs* It's for everyone who's health affects their daily life and taking care of their hair, IMO.

Mlarmour
March 25th, 2017, 06:27 PM
I'm not sure if I'd class myself as disabled or not as I've never let my illnesses stop me apart from the fact it caused me to cut off my hair. I went from BSL to shoulder length to a pixie. I was struggling with washing and caring for my hair as I couldn't lift up my arms. I'd go up to a week without washing my hair when I usually wash it every other day and it would be kept in a messy bun or a pony tail for the whole week, I wouldn't brush it if I could help it as my scalp was so sensitive and had become sore so I avoided brushing it. I have fibromyalgia - the reason I cut my hair off, hypermobility, depression and generalised anxiety disorder. I also have a dodgy knee, I fell over when I was 11 and smacked my knee on a metal man hole cover when doing cross country at school because I didn't listen to my teacher's warnings. I'm growing out my hair to get it long again, but at the same time I am also getting the thickness back in my hair. I lost half my hair very quickly after I got dengue fever in the summer when in Thailand. All my thin patched around my hair line are getting fuller. I had never been so glad to have light coloured hair when it went thin, because it made it difficult to distinguish between where my hair ended and my scalp started.

marvel-lover
March 25th, 2017, 08:33 PM
PixieP you are the sweetest person! I really hope things get better for you! :)

Rebeccalaurenxx
March 25th, 2017, 10:07 PM
Long hair can indeed be a problem when you are disabled. Once my eating and other disorder was so bad, that I was bed ridden for about 2 weeks unable to move because I was so weak. I think I was just very depressed and did not see it, because I was not starving myself but somehow had 0 energy. It eventually went away and I was able to return to school, but after being diagnosed with GAD I eventually assumed I was just extremely depressed. Had lots of other blood work done and other than being hypoglycemic, there would be no other reason for me to experience this. Especially since it has not happened again since.
Whats been trouble for me is the arthritis in my thumb. I got a manufacture job in the last month, and although I like the job a lot its wrecking my hand.
I wear a brace at work and my doctor is sending me for x-rays this week, but my thumb has hurt for the last week and half almost.
I feel like I am too young to be dealing with joint problems... but here we are.

CindiAnnwynbri
July 1st, 2017, 05:52 AM
My legs don't work very well either.. I use a cane when I walk. I put a shower chair in my walk in shower and a hand held shower head to help me wash my hair. Works great.

Garnetgem
July 1st, 2017, 06:35 AM
Not sure if i posted here before but i understand long hair and a disability can be difficult...i had a severe spinal injury and had surgery to put it back together with metal work i now have nerve damage plus its resulted in my spine being an S shape because of this my spinal cord is stretched so causing my hands go numb often so making washing and combing hair difficult...but despite this i have somehow managed to grow to classic and care for it myself..its amazing how we adapt it just takes us longer than most to care for it but we get there in the end...hugs to all.

lapushka
July 1st, 2017, 07:53 AM
Not sure if i posted here before but i understand long hair and a disability can be difficult...i had a severe spinal injury and had surgery to put it back together with metal work i now have nerve damage plus its resulted in my spine being an S shape because of this my spinal cord is stretched so causing my hands go numb often so making washing and combing hair difficult...but despite this i have somehow managed to grow to classic and care for it myself..its amazing how we adapt it just takes us longer than most to care for it but we get there in the end...hugs to all.

You are so lucky (well, relative meaning) because my legs (both of them equally bad) are hit and washing with a handheld shower head is a lot of work for me and my mom. Usually I end up washing in the sink. I have to keep balance with my crutch while my mom washes the hair. But I sometimes hate that I need to burden someone else for this...

So thank goodness you can do it on your own!!!

lithostoic
July 1st, 2017, 08:00 AM
........................

pandabarrier
July 1st, 2017, 12:07 PM
I wouldn't consider myself disabled (though I guess I technically am?) but I wasn't sure where else to ask this. For those of you with back injuries/problems, what helps you?

Backstory, after I injured my shoulder in November I've hardly gone a day without pain. I was overdosing Ibuprofin every day for the first 2 weeks after my injury. I had to stop before I did damage to my organs even though I was still in searing pain. Now, I can hardly wash the dishes. Can't shoot hoops. Wake up every day extremely stiff and throughout the day the burning, slicing feeling comes back.

I've been keeping my hair braided, and occasionally I'll put the braid into a bun. So I only have to restyle my hair once a day. Brushing isn't bad because I use my right arm. Washing sucks, but my scalp scrubber makes a huge difference because I can use my right arm for that too. Rinsing my hair and styling it, especially when it's wet are big issues.

Any additional tips would be very welcome. I'm really just looking for advice, as I am on my own with this. I've got a boyfriend but I'm not making him bathe me and braid my hair lol.

I'm sorry you injured your shoulder.
Do you have a detachable shower head, so you can hold it with your right hand and reach all areas of your head?
Or if not, you could try filling a large basin or bucket with water and use a large plastic mug to scoop the water and pour it over your head, to rinse more throughly. That's what my elderly parents do (and they sit on a low plastic stool on a non-slip bath mat, so that they can reach the basin and not slip).
As of styling tips, I don't know.

lithostoic
July 1st, 2017, 12:59 PM
........................

AZDesertRose
July 1st, 2017, 01:11 PM
I really need a detachable shower head. Unfortunately I live in an old rental with very strict regulations. When we move that's definitely something I'm going to save up and buy!

Does the kitchen sink in your place have a spray nozzle/hose? You might be able to wash your hair more easily in the kitchen sink if you have a spray nozzle than in the shower. I know I had to help my mom do that a few times after she had to have a pacemaker put in (almost eight years ago; she's fine now), because her hair needed washing but she couldn't raise her left arm above shoulder level for several weeks after the pacemaker insertion.

Garnetgem
July 1st, 2017, 01:40 PM
You are so lucky (well, relative meaning) because my legs (both of them equally bad) are hit and washing with a handheld shower head is a lot of work for me and my mom. Usually I end up washing in the sink. I have to keep balance with my crutch while my mom washes the hair. But I sometimes hate that I need to burden someone else for this...

So thank goodness you can do it on your own!!!

I expect i am in some ways but i used to wear a heavy plaster cast from neck to hips for 6 months i did need my mom to help then even going to toilet and i hated feeling helpless so i can understand how you feel..our moms don't mind but i feel we mind needing them to help us at times..there are some things i cannot do such as cooking as my balance is a bit off and with pins and needles in my hands i burn myself without even being aware..my mom does most things for me but as for my hair its the one thing i call my luxury as i can manage to care for it myself but i do stretch washes from 10 to 14 days..

sorry you have poor health it sounds a struggle for you to just wash your hair...bless.

lapushka
July 1st, 2017, 03:44 PM
I wouldn't consider myself disabled (though I guess I technically am?) but I wasn't sure where else to ask this. For those of you with back injuries/problems, what helps you?

Backstory, after I injured my shoulder in November I've hardly gone a day without pain. I was overdosing Ibuprofin every day for the first 2 weeks after my injury. I had to stop before I did damage to my organs even though I was still in searing pain. Now, I can hardly wash the dishes. Can't shoot hoops. Wake up every day extremely stiff and throughout the day the burning, slicing feeling comes back.

I've been keeping my hair braided, and occasionally I'll put the braid into a bun. So I only have to restyle my hair once a day. Brushing isn't bad because I use my right arm. Washing sucks, but my scalp scrubber makes a huge difference because I can use my right arm for that too. Rinsing my hair and styling it, especially when it's wet are big issues.

Any additional tips would be very welcome. I'm really just looking for advice, as I am on my own with this. I've got a boyfriend but I'm not making him bathe me and braid my hair lol.

In short? You need to see a doctor. :flower:
There's no way around it. The slicing searing pain could be nerve pain. Could be. See. I'm no doctor.

I take 800mg of ibuprofen for my migraines. At that dosage, the ibuprofen acts as an anti-inflammatory. This is what my orthopedist prescribed me, 3x a day for my knee. As long as you're not going over that, you're not "overdosing" on the ibuprofen. See. That is exactly why you need a doctor.

Hairkay
July 1st, 2017, 03:44 PM
My mother cut her hair very short because arthritis in her hands was making it harder to deal with her thick hair. At first she locked her hair which grew up to BSL and she maintained it via salon visits. Then she'd had enough, the hair was getting too heavy so off it came. She's had over a year of chronic back pain for which she's using pain killers to keep mobile. Then they finally found out that she has scoliosis. She then had a fall which caused damage to some exposed spinal nerves from the curved back. Her legs went numb. She's still adjusting to that. She got back some mobility and uses a walking stick. She can't walk far and is now housebound. Fortunately she'd started modifying her home a while ago so she now has a bedroom and bathroom on the ground floor of her house. She knew that arthritis could eventually limit mobility it's just no one expected it to be something else.

lithostoic
July 1st, 2017, 04:13 PM
Lapushka I don't appreciate the attitude. I didn't go into detail about how much medicine I was taking because I am embarrassed. It was upwards of 5000 mg a day if you must know.

I am no longer looking for advice.

lapushka
July 1st, 2017, 05:02 PM
Lapushka I don't appreciate the attitude. I didn't go into detail about how much medicine I was taking because I am embarrassed. It was upwards of 5000 mg a day if you must know.

I am no longer looking for advice.

What did I say that was so wrong, then? I don't understand. :shrug:

lithostoic
July 1st, 2017, 09:01 PM
I'm sorry for misinterpreting. It's something I do often :/ I'm on edge and took it the wrong way. Maybe I need a break from the internet.

Again, sorry.

leayellena
July 2nd, 2017, 12:17 AM
slopy ponys, loose ebnlish braids, can´t do a cinnabun or fig.8; sometimes I can do a french braid when I lean on a chair or couch. when I am too tired I usualy bun the braid from last night. with short hair (shorter than my neck I had cow licks for the whole day, greasy scalp was no way to hide, my layers were too poofy or too flat, I didn´t know if my hair is straight or wavy, the hairstylists were idiots (literally). but I had a hursh family. now they avoid talking about my HEALTHY hair

nikki_s
July 2nd, 2017, 12:32 AM
This is tough for Me. I do not want to sound like I am complaining, and... it is just tough.

I am a paraplegic, a T6 Complete, supposedly ASIA A. However, I have regained some muscle use below My defined injury point. I also have pressure feeling in places below My injury point. However, it will never recover enough to allow Me to walk, or feel My legs, etc. After over 8 years of severe depression, I came to terms with this, and accept it. I have had SOOO many people tell Me that they saw an article, heard something from a friend, etc about person X who is now walking, or similar, and that I should not give up hope. I guess that might work for some, but, I am guessing that due to how My brain is wired/structured, My way of coping is to simply accept it as being a lifetime disability, with maybe a .1% chance of changing. However, even if they could repair the damage tomorrow, I would have several other injuries that would make life more painful, and they would require revision/repair as well. I was in an accident, broke 7 vertebrae, ribs on both sides in the front and back, they pierced My lungs and collapsed both, and I bit My tongue in half, but they did sew it back on, and although they said they would likely have to amputate it later, I think My stubbornness... and My need to babble, verbally and in writing ;) ... contributed to it staying put, and functioning at about, mmm, 99% of its original capacity? :D I ended up with Harrington Rods on either side of My spine. I was in a coma for 5 days, not medically induced. I am guessing that My brain did what it usually does with sickness/injury, and decided: Hibernate!

Brain... oh, fun! I am Autistic. Some like to label us as being high- or low- functioning, but after much discussion between a group of us women over several months, we discovered that such a label was VERY misleading, as we each hit roadblocks, just in different ways. We used Spoons Theory as a means of description, but I added to it, because I felt that I was drawing from several sets of Spoons, and then further added Domino Theory, which is, very basically, when you have things you plan to do, need to do, are routine, etc, and each little piece fails, creating this cascade of "failure" that depletes Spoons like mad. For an Autistic, this can lead to an infinite loop, a short circuit, etc... meltdowns, and/or shutdowns. Most people would not even consider whether I am Autistic or not, but those who do know Me are quite aware of it. I also have a nice set of comorbids, including SPD (Sensory Processing Disorder), ADHD, light OCD, prosopagnosia ("face blindness", from birth, not injury), severe anxiety, echolalia, and more. While I do not have Tourette's Syndrome, I do have some fun tics, verbal and physical, that are quite similar. I have had friends say I have "Tourette's Light". I do stim, and do so much more freely now than when I was younger (and got bullied, abused, etc for it). As a result, I compensated by adopting a new stim: grinding My teeth. I do not do so while sleeping, but I do grind during the day as a stim. I am doing it right now as I type, because this is causing Me a $#@% TON of anxiety. The right side of My mouth... those teeth are mostly fillings, most are cracked, and I will end up having to have them pulled over the coming years. I am double disabled, with a medical diagnoses for both being paraplegic, and being "unemployably Autistic". I am also labelled as being "twice exceptional", which adds to My anxiety, because it is like... if only you were not this, you COULD be... THIS! I get frustrated, I say no, not true, but then I end up in tears, in a blanket and pillow fort with My stuffed animals, realizing that the label is accurate. Many of those women I mentioned earlier also described what we later termed (borrowed) as being Empathic (I compared My experiences to Deanna Troi from StarTrek:TNG, an Empathic human cross-species). I have known others, VERY predominantly women, who are not Autistic, but being neurodivergent, that also described a very similar way of experiencing life. It is like a sense, and we labelled what we felt as "energy," even though that is... New Age-y sounding. I will leave it at that, as I am already prattling far too much I fear.

I would type more, but I am losing My mind right now, and fighting EVERY urge, every little voice screaming in My brain to just DELETE THIS BABBLE. Because if I post it, then I will upset people, or aggravate, or make people feel they have to pity Me, or... I also have pretty hardcore PTSD from abuse by My Mom's second husband from age 9-15. Let your imagination run wild about that; his did, limited as it was (thankfully?). So there it is. I just reread it, and it screams "Boo Hoo! Aren't I pitiful?" Part of My brain is saying, "No, you are just sharing. If people know more about you, it will help when interacting in the future. You know this, you have been here so many times before!" But, the grinding is still going. The anxiety is quite high. And I will review this a thousand times and more until I have worn it out in My mind.

My hair has been one of My solaces (music is another), and it has been used against Me (aforementioned step-father? oh yes, he used it), knowing I would hurt as a result. I think My SPD (Sensory Processing Disorder) plays a heavy part, as I love the feel of it; texturally, the weight (SOOO much so!), the feel of it sweeping across My shoulders, etc. I feared joining and posting here on LHC because to Me this is a place I should not spoil with My quirks and such, and to upset people here would just... hurt. A lot. Too much. Seeing others that are survivors... warriors... I simply could not avoid at least trying to be part of that any longer. Life can be VERY tough. Everyone experiences tragedies. I still smile A LOT :D And I allow Myself to cry, and to scream.

So, hello to all you fellow Warriors! HUGE (but soft and comforting) huggs for all!!! :heartbeat:grouphug:
Heather :D

marvel-lover
July 2nd, 2017, 06:32 AM
Hi, nikki_s! Don't feel bad for "blabbering," I really enjoyed reading what you had to say :flower: I'm very glad you found us, and I absolutely can't wait to read more posts from you! If there's one thing I've learned from my (not too many) years of living, it's that you can't define yourself by a system of labels and what other people say. There is no "if only you weren't this, then you could be this." There is only "you are [your name here] and you are going to completely rock being you!" You are such a strong person, and I really admire that! You mentioned that music is one of your solaces? Do you play an instrument? Gentle hugs for you!!

MasCat
July 2nd, 2017, 10:35 AM
That's a deep and vulnerable post you wrote there nikki_s thank you for sharing. Enjoy your hair and do post, you're not blabbering at all :)

trinkets
July 2nd, 2017, 10:45 AM
and fighting EVERY urge, every little voice screaming in My brain to just DELETE THIS BABBLE.

Oh, so many Jedi-hugs to you. I know this feeling. Every day, I start a comment somewhere and then close it. Either "no one wants to hear my thoughts" or "you don't know what you're talking about" or "they'll make fun of you for that". (Three times so far I've fought the urge to close this reply.) I picked up the term 'brain weasels' from somewhere, and pushing them back is so difficult.

Andthetalltrees
July 2nd, 2017, 02:10 PM
nikki_s I'm autistic too, With very similar comorbids as well! I can completely relate to a lot of what you said :) . I've started to not believe in high vs low functioning either, Most people see me as pretty 'high' but there are some very simple things I just can't do and would seem more 'low' functioning so like you said we all experience it differently but similarly. About the hair, I find it a huge comfort too, when it was longer I use to say it was a like a cape or blanket, But because of SPD my scalp is incredibly sensitive and if I have any pulling or weight on it, It completely sets me off :\.

Wildcat Diva
July 2nd, 2017, 04:18 PM
Thank you Nikki for posting. I am glad you did, and I admire you for it.

Sarahlabyrinth
July 2nd, 2017, 06:43 PM
Thank you so much for posting, Nikki. Sometimes you just need to talk, you know? Hugs to you :grouphug:

AZDesertRose
July 2nd, 2017, 08:08 PM
Andthetalltrees and nikki_s, you're both very brave to be open.

I have mental illness (bipolar disorder and PTSD, mainly), and I absolutely hate the terms "high functioning" and "low functioning" and that whole concept, because there are times when I might be considered "high functioning" (for a person with mental illness severe enough to render me disabled anyway), and times when I might be considered "low functioning." I think they're often used as weapons, not as helpful terms. Someone who is "high functioning" must not need help (even if they actually do), and someone who is "low functioning" must not be able to make their own decisions (even if they are actually capable of making at least some decisions or contributing to the process, they get cut out of the process of making decisions about their own life by people who "know better what's good for them," and those people are not always making decisions that are actually in the person's best interest or what that person actually wants/needs), which is malarkey, and furthermore it's malarkey that's harmful to people who are so judged as noted in parentheses.

Best wishes to you both. :flower:

nikki_s
July 2nd, 2017, 08:50 PM
I wish I could reply to each person rather than *only* offer a very heartfelt thank you for your replies:heartbeat:
I did not sleep well. I rarely do, but last night I battled internally over writing that post. Why? Because... Me. And I am pretty sure there are many others who would have done similarly, which is one reason I chose to write it, AND post it, unedited, and not delete it. No one should EVER need to be made to feel they should be ashamed of themselves because of some physical or mental difference. I actually celebrate that diversity! Our differences are inherent, and each person thus has much to share. Sit on a cliff with another person, and the view will be different for both, be it valley, ocean, or some other scenario. Face a different direction, and you now have more to share. Add more people. Add greater diversity. Celebrate.

I am running on caffeine, and not thinking clearly. Thank you once again! :D I hope others will feel as safe here. And please know that if you need an ear, or a shoulder, or even just a silent hug, there are so many of us here, and elsewhere, that are happy to be that ear, shoulder... or hug :D :grouphug:
Heather :D

AZDesertRose
July 3rd, 2017, 11:50 AM
I wish I could reply to each person rather than *only* offer a very heartfelt thank you for your replies:heartbeat:
I did not sleep well. I rarely do, but last night I battled internally over writing that post. Why? Because... Me. And I am pretty sure there are many others who would have done similarly, which is one reason I chose to write it, AND post it, unedited, and not delete it. No one should EVER need to be made to feel they should be ashamed of themselves because of some physical or mental difference. I actually celebrate that diversity! Our differences are inherent, and each person thus has much to share. Sit on a cliff with another person, and the view will be different for both, be it valley, ocean, or some other scenario. Face a different direction, and you now have more to share. Add more people. Add greater diversity. Celebrate.

I am running on caffeine, and not thinking clearly. Thank you once again! :D I hope others will feel as safe here. And please know that if you need an ear, or a shoulder, or even just a silent hug, there are so many of us here, and elsewhere, that are happy to be that ear, shoulder... or hug :D :grouphug:
Heather :D

:applause Well said, indeed.

lapushka
July 3rd, 2017, 12:55 PM
I'm sorry for misinterpreting. It's something I do often :/ I'm on edge and took it the wrong way. Maybe I need a break from the internet.

Again, sorry.

No worries - I honestly meant no harm in saying what I said. I hope you know that. :flower:

lapushka
July 3rd, 2017, 01:04 PM
Hi nikki_s! I'm glad you posted. I was in a car accident too, at age 23, work-related (on my way to work). I still to this day suffer the consequences as I developed CRPS due to it. It was discovered almost 3 years too late (during which I deteriorated and no-one knew why or could offer me an explanation). I'm 45 right now, with a disability in both legs (no not paralyzed but barely functioning). Anyway, that's as much as I'm wanting to share. I hate talking about this as well!

The CRPS later spread to both arms (but that, as opposed to my legs, is still treatable). It is a neurological condition.

Then I got Meničre's Disease to boot. And right now, I got Lyme's to add to the mix, for which I am undergoing treatment as we speak.

It's like I always get stuck with something. LOL!

*Wednesday*
July 3rd, 2017, 04:43 PM
Nikki,
What a candid and passionate post to the community. I am humbled by it.
Peace and Light.

nikki_s
July 4th, 2017, 02:28 AM
Hi nikki_s! I'm glad you posted. I was in a car accident too, at age 23, work-related (on my way to work). I still to this day suffer the consequences as I developed CRPS due to it. It was discovered almost 3 years too late (during which I deteriorated and no-one knew why or could offer me an explanation). I'm 45 right now, with a disability in both legs (no not paralyzed but barely functioning). Anyway, that's as much as I'm wanting to share. I hate talking about this as well!

The CRPS later spread to both arms (but that, as opposed to my legs, is still treatable). It is a neurological condition.

Then I got Meničre's Disease to boot. And right now, I got Lyme's to add to the mix, for which I am undergoing treatment as we speak.

It's like I always get stuck with something. LOL!
Oh no!!! That is a lot to deal with!!
I actually do not mind talking about the mental and physical disabilities/differences/etc. I just always get anxious when I have not been specifically *invited* to talk about some aspect of Myself. I love to share, and love when someone (respectfully) asks questions. I always try to qualify what I offer with "But, please remember: this is just My story, and My experience(s). While others may be similar, it is best to not assume." If they then meet, say, several other paraplegics, they can begin to see some commonalities, and also realize how different it can be for each of us.

Hope things get better for you!!! :D


Nikki,
What a candid and passionate post to the community. I am humbled by it.
Peace and Light.
Wow, thank you so much!!! :D


:applause Well said, indeed.
And another Wow, thank you so much!!! :D

I think one of the greatest things I took from My recovery was the diversity of injury types, how each manifested, and how each person was dealing with them. Move beyond spinal cord injuries and head injuries (trauma survivors), and you have everything from terminal elderly to terminal kids to people recovering from cancer, heart surgeries, etc. Those kids though... Absolutely heartbreaking! And I would have someone remark, "Hard to feel bad for yourself after meeting those kids, huh?" I began to wonder... How can I be so sad if I am not nearly as bad off? But, I would also be stuck in bed, with this body brace (1 year!), and here are friends that can all walk, come and go as they please, etc. I knew what some would be doing, things I no longer would be able to do. And I thought... well, how can they EVER be sad then? As I considered it all, I realized that, for Me at least, it was finding some middle ground, and owning it. I could be sad. VERY sad. And I HAD to let Myself be sad. But, not for too long. Because, after all, it wasn't that bad. Right? That was My tether, so to speak. I could fall into the pit, cry for hours. And there was that tether to enable Me to climb back out. I learned to allow Myself to step away from comparing to others, and grieve for Myself. Otherwise, I imagine it would just collect deep inside, and start to fester and rot and... ewww. I still grieve, and imagine I always will. But, I have those tethers. And some friends that are beyond amazing :D (did not intend to write all that, not sure where it came from, but.. there it is)

Heather :D

lapushka
July 4th, 2017, 03:38 AM
Oh no!!! That is a lot to deal with!!
I actually do not mind talking about the mental and physical disabilities/differences/etc. I just always get anxious when I have not been specifically *invited* to talk about some aspect of Myself. I love to share, and love when someone (respectfully) asks questions. I always try to qualify what I offer with "But, please remember: this is just My story, and My experience(s). While others may be similar, it is best to not assume." If they then meet, say, several other paraplegics, they can begin to see some commonalities, and also realize how different it can be for each of us.

Hope things get better for you!!! :D

Thank you. That means a lot coming from you (as your have your own issues!) - I know what you mean, it's rough to share sometimes, but I'm glad you did. :flower:

nikki_s
July 7th, 2017, 12:45 AM
Thank you. That means a lot coming from you (as your have your own issues!) - I know what you mean, it's rough to share sometimes, but I'm glad you did. :flower:

Thanks!!! :D I love seeing your posts!
I actually had to run away from all social stuff for two days, was too much (spoons depleting too quickly, and I felt I had... I had been "too much" I guess. Hard to explain)
Heather :D

valkyrie90
July 7th, 2017, 01:50 AM
I have cerebral palsy and people keep saying I shouldn't keep my hair long because it's hard for me to manage it. Recently I did a side shave and people looks at me like I'm some kind of alien lol. " You look like this already ( I guess they mean the fact that I'm on a wheelchair ) you don't need to draw more attention , do you? " . I wanna scream at the face of each and everyone of them : " I keep myself long because it feels damn good and I love to feel good about myself. Yeah it takes me forever to do my haircare routine but I don't mind so why should you ? I side shaved my head because it's a nice experience , not to draw attention whatsoever. Well sometimes I feel like people don't treat us as human because of our disability . I'm sick of it >"<

lapushka
July 7th, 2017, 03:29 AM
Thanks!!! :D I love seeing your posts!
I actually had to run away from all social stuff for two days, was too much (spoons depleting too quickly, and I felt I had... I had been "too much" I guess. Hard to explain)
Heather :D

Yes, I know full well how that gets. I usually watch YT vids when I get like that. Fairly little you need to do but watch. :)

lapushka
July 7th, 2017, 03:31 AM
I have cerebral palsy and people keep saying I shouldn't keep my hair long because it's hard for me to manage it. Recently I did a side shave and people looks at me like I'm some kind of alien lol. " You look like this already ( I guess they mean the fact that I'm on a wheelchair ) you don't need to draw more attention , do you? " . I wanna scream at the face of each and everyone of them : " I keep myself long because it feels damn good and I love to feel good about myself. Yeah it takes me forever to do my haircare routine but I don't mind so why should you ? I side shaved my head because it's a nice experience , not to draw attention whatsoever. Well sometimes I feel like people don't treat us as human because of our disability . I'm sick of it >"<

Oh gosh that sucks!!! Don't let it get to you, I know I know easier said than done, but I mean it. I use a crutch, a walking aid, and wheelchair / disability scooter, all the things, and sometimes I get funny looks, but oh well... I try not to let it get to me. At least people never said much to me.

marvel-lover
July 7th, 2017, 04:03 AM
Someone recommended that I cut my hair and dye it gray to "match the other old ladies" since I apparently walk like one of them at my pool today. I was limping a bit cause I jumped in to grab someone and my joints didn't appreciate that. How rude!!

AZDesertRose
July 7th, 2017, 05:10 AM
I have cerebral palsy and people keep saying I shouldn't keep my hair long because it's hard for me to manage it. Recently I did a side shave and people looks at me like I'm some kind of alien lol. " You look like this already ( I guess they mean the fact that I'm on a wheelchair ) you don't need to draw more attention , do you? " . I wanna scream at the face of each and everyone of them : " I keep myself long because it feels damn good and I love to feel good about myself. Yeah it takes me forever to do my haircare routine but I don't mind so why should you ? I side shaved my head because it's a nice experience , not to draw attention whatsoever. Well sometimes I feel like people don't treat us as human because of our disability . I'm sick of it >"<

My disability is relatively invisible, as in, I don't use any equipment to help me do things (except my glasses, but that's a socially acceptable disability aid), but I totally hear you on the general public treating disabled people as subhuman, and it sucks. Some people react to my disclosing my mental illnesses like I'm going to grab the nearest fatal weapon and murder them on the spot, because of that horrible social narrative that "mentally ill = violent and scary" (not helped by the fact that every time some white dude shoots up some public place in the US, the news automatically labels him "mentally ill" whether he has any history of mental illness or not [and when, if the shooter were anyone other than a white man, the label applied to him would be "terrorist"] and totally ignores the fact that almost all of these dudes have a documented history of violence against women, such as domestic violence and/or sexual assault--stepping off soapbox now, sorry), and I hate it so much. I've even gotten the "are you going to kill me?" reaction out of family with whom I have lived for years and who should blasted well know me better than that.

And no one who acts like disabled people aren't full humans who deserve to be treated decently ever seems to take into consideration that they themselves could end up disabled. All it takes is one bad car accident or on-the-job accident or a diagnosis of a sufficiently severe/incapacitating illness and there goes one's ability to work (and/or function without help of some sort, be it medications or mobility aids or whatever).

Grr. :steam

lapushka
July 7th, 2017, 05:35 AM
Someone recommended that I cut my hair and dye it gray to "match the other old ladies" since I apparently walk like one of them at my pool today. I was limping a bit cause I jumped in to grab someone and my joints didn't appreciate that. How rude!!

What the heck! That is *so* rude! Don't give it a second thought, marvel-lover. It's not worth fretting over. How can people be like that!


My disability is relatively invisible, as in, I don't use any equipment to help me do things (except my glasses, but that's a socially acceptable disability aid), but I totally hear you on the general public treating disabled people as subhuman, and it sucks. Some people react to my disclosing my mental illnesses like I'm going to grab the nearest fatal weapon and murder them on the spot, because of that horrible social narrative that "mentally ill = violent and scary" (not helped by the fact that every time some white dude shoots up some public place in the US, the news automatically labels him "mentally ill" whether he has any history of mental illness or not [and when, if the shooter were anyone other than a white man, the label applied to him would be "terrorist"] and totally ignores the fact that almost all of these dudes have a documented history of violence against women, such as domestic violence and/or sexual assault--stepping off soapbox now, sorry), and I hate it so much. I've even gotten the "are you going to kill me?" reaction out of family with whom I have lived for years and who should blasted well know me better than that.

And no one who acts like disabled people aren't full humans who deserve to be treated decently ever seems to take into consideration that they themselves could end up disabled. All it takes is one bad car accident or on-the-job accident or a diagnosis of a sufficiently severe/incapacitating illness and there goes one's ability to work (and/or function without help of some sort, be it medications or mobility aids or whatever).

Grr. :steam

We had a schizophrenic in our family years ago (my mom's cousin). When he was over with them he was always great, doing fine. I witnessed an episode one time and my grandma could calm him down. He was vulnerable, at that. Very vulnerable. Not violent at all.

TMI (he ran under a train in his late 20s early 30s, thereabouts, I'm a little fuzzy on the details). I was a small child when he was still with us.

AZDesertRose
July 7th, 2017, 05:43 AM
We had a schizophrenic in our family years ago (my mom's cousin). When he was over with them he was always great, doing fine. I witnessed an episode one time and my grandma could calm him down. He was vulnerable, at that. Very vulnerable. Not violent at all.

The facts of the matter are that most people with mental illnesses are not violent, and of those who are, the violence is mostly directed at themselves (self-injury behaviors, suicide attempts). The minority of people with mental illness who are a threat to anyone besides themselves is very small.

In fact, people with mental illness are 2.5 times more likely to be victims of violence than the general population and generally less likely to get any sort of justice against the perpetrator of violence, because all it takes is the perpetrator saying, "Oh, [victim] is crazy; you can't believe anything [victim] says," and particularly if the victim has any history of involuntary commitment (even for a suicide attempt), the police immediately take the perpetrator's side and view the victim as an unreliable source of information about the crime or, worse, a liar who needs to be prosecuted for "filing a false complaint."

valkyrie90
July 7th, 2017, 06:06 AM
I also feel like it's so much harder for disabled women compared to disabled men. It might sound crazy but if a disabled woman here gets raped , people will have hard time just believe it actually happened. Simply because they all think that disabled women are so undesirable that no rapists ever care to target them . It makes me so mad . I read about one disabled girl that got raped then had a baby and there were people who said that she got lucky now she got a baby . There are days when I find it hard to tolerate humanity...

AZDesertRose
July 7th, 2017, 06:30 AM
I also feel like it's so much harder for disabled women compared to disabled men. It might sound crazy but if a disabled woman here gets raped , people will have hard time just believe it actually happened. Simply because they all think that disabled women are so undesirable that no rapists ever care to target them . It makes me so mad . I read about one disabled girl that got raped then had a baby and there were people who said that she got lucky now she got a baby . There are days when I find it hard to tolerate humanity...

The people who think disabled women are "too undesirable to be raped" are also the same people who think rape is about sex. It's not. It's about power, control, domination, and a desire to hurt another person; sex is just the weapon of enforcing the rapist's desire to overpower, control, dominate, and hurt another person, and disabled people, particularly women/feminine people, are much more vulnerable to violence such as rape/sexual assault, because they often lack the physical ability to attempt to escape or fight back (assuming they don't freeze as a trauma reaction, and freezing/being unable to react in the moment is a very valid and fairly common response to a terrifying situation), in addition to the tendency of the police/court system to disregard the credibility and humanity of disabled victims of crime.

TL;DR, I totally agree. It's a bunch of :bs: perpetrated by ignorant people with no compassion, basically.

marvel-lover
July 7th, 2017, 07:04 AM
The facts of the matter are that most people with mental illnesses are not violent, and of those who are, the violence is mostly directed at themselves (self-injury behaviors, suicide attempts). The minority of people with mental illness who are a threat to anyone besides themselves is very small.

In fact, people with mental illness are 2.5 times more likely to be victims of violence than the general population and generally less likely to get any sort of justice against the perpetrator of violence, because all it takes is the perpetrator saying, "Oh, [victim] is crazy; you can't believe anything [victim] says," and particularly if the victim has any history of involuntary commitment (even for a suicide attempt), the police immediately take the perpetrator's side and view the victim as an unreliable source of information about the crime or, worse, a liar who needs to be prosecuted for "filing a false complaint."

I'm totally with you on that! I'm Bipolar II (rapid cycling) with OCD tendencies, severe generalized anxiety disorder, severe social anxiety, and a panic disorder. For some reason everyone thinks I'm insane when I disclose the bipolar and OCD diagnosis (the anxiety is apparently easily recognized by people; as they say, I radiate anxiousness). I can't stand how the mental illness community is constantly being dragged down by those who blame their horrific actions on a non-existent mental illness!

lapushka
July 7th, 2017, 07:25 AM
I'm totally with you on that! I'm Bipolar II (rapid cycling) with OCD tendencies, severe generalized anxiety disorder, severe social anxiety, and a panic disorder. For some reason everyone thinks I'm insane when I disclose the bipolar and OCD diagnosis (the anxiety is apparently easily recognized by people; as they say, I radiate anxiousness). I can't stand how the mental illness community is constantly being dragged down by those who blame their horrific actions on a non-existent mental illness!

That's why medical records are sealed. :flower: I'd not share this information with anyone, but maybe close friends that you can trust (but can you, ultimately) and family.

marvel-lover
July 7th, 2017, 08:33 AM
That's why medical records are sealed. :flower: I'd not share this information with anyone, but maybe close friends that you can trust (but can you, ultimately) and family.

I'm totally in agreement with you. I'm glad my medical record is sealed; though I'm still proud to be me. My philosophy is, if they can't handle it, it's not my problem.

lapushka
July 7th, 2017, 08:40 AM
I'm totally in agreement with you. I'm glad my medical record is sealed; though I'm still proud to be me. My philosophy is, if they can't handle it, it's not my problem.

Truth! :D I share my medical stuff also, but pick & choose - I don't often share that with a lot of people.

valkyrie90
July 7th, 2017, 09:31 AM
Truth! :D I share my medical stuff also, but pick & choose - I don't often share that with a lot of people.
I still share it with selected people who really care. Not ones who are curious and end up asking me stupid question. I find it funny but still sometimes it gets into me. Sigh.

languagenut
July 7th, 2017, 10:53 AM
Someone recommended that I cut my hair and dye it gray to "match the other old ladies" since I apparently walk like one of them at my pool today. I was limping a bit cause I jumped in to grab someone and my joints didn't appreciate that. How rude!!

That level of rudeness just blows my mind O_o. How on earth could anyone think that is an okay thing to say to someone??

Garnetgem
July 7th, 2017, 05:00 PM
Someone recommended that I cut my hair and dye it gray to "match the other old ladies" since I apparently walk like one of them at my pool today. I was limping a bit cause I jumped in to grab someone and my joints didn't appreciate that. How rude!!

Gosh the rudeness of some people..

Garnetgem
July 7th, 2017, 05:03 PM
I had a similar experience a while back someone told me my long hair was "going to waste" on someone like me even saying i should cut it short seeing as i have a disability and there seemed no point in growing it...the words really stung me at the time.

marvel-lover
July 7th, 2017, 05:30 PM
I had a similar experience a while back someone told me my long hair was "going to waste" on someone like me even saying i should cut it short seeing as i have a disability and there seemed no point in growing it...the words really stung me at the time.
I can't believe someone would say such a horrible thing! Grow that gorgeous hair and prove them wrong; you deserve having beautiful hair that makes you happy!

ArienEllariel
July 8th, 2017, 02:38 AM
I had a similar experience a while back someone told me my long hair was "going to waste" on someone like me even saying i should cut it short seeing as i have a disability and there seemed no point in growing it...the words really stung me at the time.

That's just... *grumble grumble* I guess their idea is that a disabled person might as well just never care about appearance. Makes me mad.

Garnetgem
July 8th, 2017, 03:23 PM
That's just... *grumble grumble* I guess their idea is that a disabled person might as well just never care about appearance. Makes me mad.

Yes like we don't count or have feelings...i didn't reply back as i was simply speechless!

Garnetgem
July 8th, 2017, 03:24 PM
I can't believe someone would say such a horrible thing! Grow that gorgeous hair and prove them wrong; you deserve having beautiful hair that makes you happy!

Thank you for your kind comment made me smile :)

valkyrie90
July 26th, 2017, 01:50 AM
How do you measure your hair while sitting ? Is it not accurate if you can't stand really straight to measure ? I think I suffer from "not long enough" syndrome and trying to post a silly question. Ahh...

lapushka
July 26th, 2017, 05:56 AM
How do you measure your hair while sitting ? Is it not accurate if you can't stand really straight to measure ? I think I suffer from "not long enough" syndrome and trying to post a silly question. Ahh...

Have someone measure while you sit, and sit on a stool or sideways on a chair with a back. It's not difficult. Just don't sit on your hair. There's no better way to do it.

lisamt
July 26th, 2017, 09:15 PM
I guess I belong here? I don't usually refer to myself as disabled since my disabilities are mostly "invisible"/mental. but, I also have some pretty serious nerve damage in my arm from a dog attack which can make it difficult for me to do anything with my hair that requires lifting my arm (yet another reason I avoid elaborate styles lol), some days are worse than others :shrug:

nikki_s
July 27th, 2017, 12:48 AM
How do you measure your hair while sitting ? Is it not accurate if you can't stand really straight to measure ? I think I suffer from "not long enough" syndrome and trying to post a silly question. Ahh...
I can ballpark Mine, but for a real measurement, I will have someone else help, and use My arms to attain proper posture. I actually had to customize My wheelchair; men do not have the same posture/structure, and I have a gymnast's posture, close to hyperlordosis, so I use a pretty thick lumbar support to help reduce severe discomfort.

nikki_s
July 27th, 2017, 12:51 AM
I guess I belong here? I don't usually refer to myself as disabled since my disabilities are mostly "invisible"/mental. but, I also have some pretty serious nerve damage in my arm from a dog attack which can make it difficult for me to do anything with my hair that requires lifting my arm (yet another reason I avoid elaborate styles lol), some days are worse than others :shrug:
There are many in here with"invisible" disabilities! Welcome!!! :D I am Autistic in addition to being a paraplegic, and most of the time I can "invisible-ize" it. Yesterday though... I was ticing soooo hard, and definitely got loks, so not as invisible HahHAha!!

So sorry about the dog attack :( Hope you have more good days than tough/bad ones! :D

leayellena
July 27th, 2017, 01:16 AM
How do you measure your hair while sitting ? Is it not accurate if you can't stand really straight to measure ? I think I suffer from "not long enough" syndrome and trying to post a silly question. Ahh...

same here. I use my bathroom mirror and my photo camera to check out (photograph if I am still beginner in making my new hairstyle. I also use my mirror to check out my neck possition especially when I micro trim.
But I don´t check the mirror when I braid my hair or do my day to day updo´s.
tip: feeling your hair is the key to a decent hairstyle.

lapushka
September 24th, 2017, 08:28 AM
I had a nasty fall yesterday. I was taking a few steps from our garage to our hallway, took one step backwards (God knows why), put my crutch down, twisted my right foot, and there I went, and on my tailbone too. Full force, because my knees are just plain useless; they can't hold my weight and I can't put any weight on them, they just give out. So I went flat, full on BAM.

Now I have a busted up tailbone, it hurts, but not "broken" hurt, more like sprainy, stiff (thank goodness).

It's getting a bit better now since I got up this morning (oh boy!) and I'm sure it'll be fine.

But dang, what an adventure! :lol:

Hairkay
September 24th, 2017, 12:51 PM
I had a nasty fall yesterday. I was taking a few steps from our garage to our hallway, took one step backwards (God knows why), put my crutch down, twisted my right foot, and there I went, and on my tailbone too. Full force, because my knees are just plain useless; they can't hold my weight and I can't put any weight on them, they just give out. So I went flat, full on BAM.

Now I have a busted up tailbone, it hurts, but not "broken" hurt, more like sprainy, stiff (thank goodness).

It's getting a bit better now since I got up this morning (oh boy!) and I'm sure it'll be fine.

But dang, what an adventure! :lol:

Hi Lapushka,

that does sound painful. I hope you recover soon.

Cg
September 24th, 2017, 12:52 PM
I had a nasty fall yesterday. I was taking a few steps from our garage to our hallway, took one step backwards (God knows why), put my crutch down, twisted my right foot, and there I went, and on my tailbone too. Full force, because my knees are just plain useless; they can't hold my weight and I can't put any weight on them, they just give out. So I went flat, full on BAM.

Now I have a busted up tailbone, it hurts, but not "broken" hurt, more like sprainy, stiff (thank goodness).

It's getting a bit better now since I got up this morning (oh boy!) and I'm sure it'll be fine.

But dang, what an adventure! :lol:

Oh, dear. Hope you heal quickly, fully.

I can sympathise because I broke my tailbone once. That once was more than enough! Poor Lapushka, ouch!

amiraaah
September 24th, 2017, 01:13 PM
My disability is very severe I had cancer in my right eye when I was 5 and that of course left me with an artificial lense in that eye it's okay but I can't see anything with it neither see the light because of this disability I always feel that the right side of my hair is in a worse shape than the left I can't straighten it alone I can't see if it is combed well and check if no hair is sticking out although I look in the mirror but that doesn't help alot ����

lapushka
September 24th, 2017, 02:43 PM
Hi Lapushka,

that does sound painful. I hope you recover soon.


Oh, dear. Hope you heal quickly, fully.

I can sympathise because I broke my tailbone once. That once was more than enough! Poor Lapushka, ouch!

Thank you both. Cg, OMG, broken? That is really tough! I don't think mine is broken. And this evening it feels better a bit compared to this morning (ouch). Maybe TMI but sitting on a toilet seat is the toughest so far.


My disability is very severe I had cancer in my right eye when I was 5 and that of course left me with an artificial lense in that eye it's okay but I can't see anything with it neither see the light because of this disability I always feel that the right side of my hair is in a worse shape than the left I can't straighten it alone I can't see if it is combed well and check if no hair is sticking out although I look in the mirror but that doesn't help alot ����

That sounds really hard. Maybe just let it go natural. Far less effort, IMMHO than having to straighten it every time!

amiraaah
September 24th, 2017, 03:08 PM
I stopped straightening it I don't like also to tell people about it I feel like I will be judged by having such hard disability but I'm fine with it and I do have that sense of satisfaction and gratefulness about what I have .

languagenut
September 24th, 2017, 11:31 PM
Ouch, Lapushka! :-(

Glad no bones were broken, and hope you recover quickly!

lapushka
September 25th, 2017, 04:47 AM
Ouch, Lapushka! :-(

Glad no bones were broken, and hope you recover quickly!

It's already feeling better today. Just (TMI) going on the toilet seat is a bit much still. I'm recovering from this little "incident" quickly I must say, and I'm so happy for it. Thank you for your well wishes & concern, languagenut!

mindwiped
September 26th, 2017, 04:30 AM
I had a nasty fall yesterday. I was taking a few steps from our garage to our hallway, took one step backwards (God knows why), put my crutch down, twisted my right foot, and there I went, and on my tailbone too. Full force, because my knees are just plain useless; they can't hold my weight and I can't put any weight on them, they just give out. So I went flat, full on BAM.

Now I have a busted up tailbone, it hurts, but not "broken" hurt, more like sprainy, stiff (thank goodness).

It's getting a bit better now since I got up this morning (oh boy!) and I'm sure it'll be fine.

But dang, what an adventure! :lol:

OUCH! I've got arthritis in my lower spine, I cannot imagine the bruising pain Lapushka. If you start having shooting pain down either leg, please see your doctor as soon as you're able.



My disability is very severe I had cancer in my right eye when I was 5 and that of course left me with an artificial lense in that eye it's okay but I can't see anything with it neither see the light because of this disability I always feel that the right side of my hair is in a worse shape than the left I can't straighten it alone I can't see if it is combed well and check if no hair is sticking out although I look in the mirror but that doesn't help alot ����

Amiraaah-I'm short to hear of your vision issues. My husband is legally blind. He's lucky, after a surgery to correct his focal point he can correct his good eye to 60/20, but his bad eye can only corrected to 200/20. Without correction he cannot make out the top letter on the chart, usually the letter "E". I'm not sure what advice to give you about your hair, he keeps his short, however he shaves by feel, might that help with your hair?

lapushka
September 26th, 2017, 05:21 AM
OUCH! I've got arthritis in my lower spine, I cannot imagine the bruising pain Lapushka. If you start having shooting pain down either leg, please see your doctor as soon as you're able.

Yes, I was conscious of that fact, mindwiped. :) I was thinking of that! It's fine, I think, and again my tailbone feels a little bit better than yesterday, so it's getting steadily better. Thank God.

This reminds me of the fact that I once keeled over with my disability scooter (uneven sidewalk that I mounted, even though I had driven on it the way I should, nice and slow and steady). Something must have been uneven and I fell over machine and all. I had a blue left hip for ages after that. Luckily some nice people had seen it and lifted me off the ground (I have no strength in my knees so I can't get up from the ground).

Thank goodness my parents both managed to lift me up when it happened with my tailbone. :flower: First to a chair, and then I could get up (with some pain)!

Thank you for the concern!!! :)

amiraaah
September 26th, 2017, 05:31 AM
OUCH! I've got arthritis in my lower spine, I cannot imagine the bruising pain Lapushka. If you start having shooting pain down either leg, please see your doctor as soon as you're able.



Amiraaah-I'm short to hear of your vision issues. My husband is legally blind. He's lucky, after a surgery to correct his focal point he can correct his good eye to 60/20, but his bad eye can only corrected to 200/20. Without correction he cannot make out the top letter on the chart, usually the letter "E". I'm not sure what advice to give you about your hair, he keeps his short, however he shaves by feel, might that help with your hair?
I can see well the left eye is -1 I see well with it it's just the right side of my hair that I can't see with my right eye when I look at the mirror I see it but always feel that the right part is damaged and is more frizzy than the left as I don't take good care of it because of my disability.

marvel-lover
September 26th, 2017, 07:32 AM
I don't know if this belongs here, but I'm going to ask for suggestions. Tomorrow I go back to see the cardiologist for the first time since I was 15. I know I'm going to need heart surgery again, but not for a while (I assume). My concern is all of the tests and things that they will run. I don't like braids very much because I have really thick hair and layers that puff out. I can't wear a bun, because I'll be laying down for a good portion of tomorrow. I cant leave it down or braided because I don't want my hair getting caught in the Echo or EKG sticky gel and stuff. Does anyone have any suggestions for how to wear my hair?

lapushka
September 26th, 2017, 08:10 AM
I don't know if this belongs here, but I'm going to ask for suggestions. Tomorrow I go back to see the cardiologist for the first time since I was 15. I know I'm going to need heart surgery again, but not for a while (I assume). My concern is all of the tests and things that they will run. I don't like braids very much because I have really thick hair and layers that puff out. I can't wear a bun, because I'll be laying down for a good portion of tomorrow. I cant leave it down or braided because I don't want my hair getting caught in the Echo or EKG sticky gel and stuff. Does anyone have any suggestions for how to wear my hair?

OMG heart surgery is tough, especially at an early age. Good luck for the tests. Maybe a side-braid will work that you roll up into a side bun, that way it won't bug you when laying down. I'm afraid there's far too few options here, especially with what you've already ruled out. I mean, the hair has to go somewhere, and leaving it loose is not an option with the sticky stuff.

marvel-lover
September 26th, 2017, 11:03 AM
OMG heart surgery is tough, especially at an early age. Good luck for the tests. Maybe a side-braid will work that you roll up into a side bun, that way it won't bug you when laying down. I'm afraid there's far too few options here, especially with what you've already ruled out. I mean, the hair has to go somewhere, and leaving it loose is not an option with the sticky stuff.

Thank you, Lapushka! I will definitely look into doing a side bun. I hadn't considered that. Thanks for the advice! I hope you're doing well, I'm very sorry to hear that you fell, but glad you didn't break any bones. Please get better soon!

Cg
September 26th, 2017, 11:03 AM
I don't know if this belongs here, but I'm going to ask for suggestions. Tomorrow I go back to see the cardiologist for the first time since I was 15. I know I'm going to need heart surgery again, but not for a while (I assume). My concern is all of the tests and things that they will run. I don't like braids very much because I have really thick hair and layers that puff out. I can't wear a bun, because I'll be laying down for a good portion of tomorrow. I cant leave it down or braided because I don't want my hair getting caught in the Echo or EKG sticky gel and stuff. Does anyone have any suggestions for how to wear my hair?

Maybe a topknot bun you can reposition from time to time? I do this with octopus clip when I'm in hosp.

marvel-lover
September 26th, 2017, 12:01 PM
Maybe a topknot bun you can reposition from time to time? I do this with octopus clip when I'm in hosp.

That's also a good idea! Where can I find an octopus clip big enough to hold my hair? (I'm in America)

Cg
September 26th, 2017, 04:20 PM
Almost any cheapie store. Walmart or its ilk. I find them also in chain supermarkets.

lapushka
September 26th, 2017, 04:25 PM
Thank you, Lapushka! I will definitely look into doing a side bun. I hadn't considered that. Thanks for the advice! I hope you're doing well, I'm very sorry to hear that you fell, but glad you didn't break any bones. Please get better soon!

Thank you so so much! :D

Sarahlabyrinth
September 26th, 2017, 04:32 PM
Yes, hoping very much for a quick recovery for you, Lapushka! :)

CindyOfTheOaks
September 26th, 2017, 04:47 PM
I had a nasty fall yesterday. I was taking a few steps from our garage to our hallway, took one step backwards (God knows why), put my crutch down, twisted my right foot, and there I went, and on my tailbone too. Full force, because my knees are just plain useless; they can't hold my weight and I can't put any weight on them, they just give out. So I went flat, full on BAM.

Now I have a busted up tailbone, it hurts, but not "broken" hurt, more like sprainy, stiff (thank goodness).

It's getting a bit better now since I got up this morning (oh boy!) and I'm sure it'll be fine.

But dang, what an adventure! :lol:



Ouch !
I am so glad you are not laid up from this !

PixieP
September 26th, 2017, 05:40 PM
I'm gonna do an MRI on Thursday and I'm in the "what to do with my hair"-boat too. They're gonna be scanning my neck, so I'll be inside the horrible head brace thing that helps the head hold still. I've done that before and there is no room for a bun, I'm not allowed a braid down my back (it would hurt to lie on anyway), and a braid over my shoulder will be painful because of the brace thingy (it "pushes" into my shoulders). And having it loose means lying on top of it. Ugh that stresses me out. MRI's are stressful for me as it is, as I get panic attacks, and my whole body cramps and hurts like hell when I'm forced to lie completly still.

marvel-lover
September 27th, 2017, 07:22 AM
I'm gonna do an MRI on Thursday and I'm in the "what to do with my hair"-boat too. They're gonna be scanning my neck, so I'll be inside the horrible head brace thing that helps the head hold still. I've done that before and there is no room for a bun, I'm not allowed a braid down my back (it would hurt to lie on anyway), and a braid over my shoulder will be painful because of the brace thingy (it "pushes" into my shoulders). And having it loose means lying on top of it. Ugh that stresses me out. MRI's are stressful for me as it is, as I get panic attacks, and my whole body cramps and hurts like hell when I'm forced to lie completly still.
I'm sorry to hear that you're stressed. Maybe you could look into a crown braid or something like that? It would be secure to your head and out of the way of the machine. Probably really comfortable too!

PixieP
September 27th, 2017, 08:33 AM
I'm sorry to hear that you're stressed. Maybe you could look into a crown braid or something like that? It would be secure to your head and out of the way of the machine. Probably really comfortable too!

If I could do one! XD I can’t have bobby pins in the MRI machine, no metal allowed!

lapushka
September 27th, 2017, 08:35 AM
Yes, hoping very much for a quick recovery for you, Lapushka! :)


Ouch !
I am so glad you are not laid up from this !

Thank you so much, you guys, for caring. :D That is awesome.

I had to relax and rest, but I do that anyway with the disability I have. I just put an extra cushion underneath my bum (which sometimes was too much). It's going fine now, it is still a little stiff, but I hardly feel it now. So, crisis averted. It's all good again with my tailbone. :) :thumbsup:

valkyrie90
September 27th, 2017, 09:44 AM
I'm glad you're doing better lapuska. Falling is always the worst nightmare to me as my reaction is not fast enough to protect me from the fall so I just fall like a tree. =)). Mom complains a lot about me not having balls to fall , the main reason why I can't do better with physical treatment and end up sticking to my wheelchair. I wish I had more of " adventure" you had . * sigh*

lapushka
September 27th, 2017, 12:25 PM
I'm glad you're doing better lapuska. Falling is always the worst nightmare to me as my reaction is not fast enough to protect me from the fall so I just fall like a tree. =)). Mom complains a lot about me not having balls to fall , the main reason why I can't do better with physical treatment and end up sticking to my wheelchair. I wish I had more of " adventure" you had . * sigh*

Yeah, it is, falling is not exactly the best that can happen and that's a pretty darn big understatement! I fall like a tree too! Thank goodness I didn't fall forward (because my knees would have gotten SO bruised it's not funny).

Don't go asking for an "adventure", for sure it wasn't fun. LOL
At least I have a sense of humor about it all, right? ;)

PixieP
September 28th, 2017, 05:37 PM
I ended up making a suuuper high bun with a small acrylic fork, a Spock bun as that creates a very flat bun. And then the radiologist told me to take it out since she didn't trust there not being any metal parts in it *rolls eyes* I told her 4 times that it was just plastic, but nope. Ugh. So I ended up kinda awkwardly piling my hair on top of my head so half of it ended up stuck under my head and half of it was in my eyes...

At least the MRI machine I was in today was way faster than those I've been in before, so instead of talking 40-50 minutes I was only in there for about 18 minutes or so. And no panic attack!

Cg
September 28th, 2017, 05:45 PM
I ended up making a suuuper high bun with a small acrylic fork, a Spock bun as that creates a very flat bun. And then the radiologist told me to take it out since she didn't trust there not being any metal parts in it *rolls eyes* I told her 4 times that it was just plastic, but nope. Ugh. So I ended up kinda awkwardly piling my hair on top of my head so half of it ended up stuck under my head and half of it was in my eyes...

At least the MRI machine I was in today was way faster than those I've been in before, so instead of talking 40-50 minutes I was only in there for about 18 minutes or so. And no panic attack!

Be glad they were so cautious about the metal even though it left you with uncontained hair. Better to inconvenience the patient than harm her.

PixieP
September 29th, 2017, 03:19 AM
I see your point, but I this is a Crockett Mountain fork, I know with 100% certainty that it is pure acrylic.

And I was so stressed about the hair, and having hair in my eyes, that I was really close to a panic attack, I worked really hard to keep that at bay. That does count as harm to me... I'm still stressed out about it and I slept really badly tonight because of the stressed state of my body. Oh well. Now I just have to wait for a week or more to find out the results... (do I have MS or not!)

lapushka
September 29th, 2017, 04:55 AM
Guys, about a week after it happened, my tailbone is *fine* again! Yes! :cheer: Thank you for all the encouragement and well wishes along the way, I appreciate it so much!!! :D

Cg
September 29th, 2017, 09:42 AM
I see your point, but I this is a Crockett Mountain fork, I know with 100% certainty that it is pure acrylic.

And I was so stressed about the hair, and having hair in my eyes, that I was really close to a panic attack, I worked really hard to keep that at bay. That does count as harm to me... I'm still stressed out about it and I slept really badly tonight because of the stressed state of my body. Oh well. Now I just have to wait for a week or more to find out the results... (do I have MS or not!)

Well, I'm sorry you found it so distressing. I meant only that discomfort would be better than injury. I'm sure you knew absolutely it was fine, but these people don't want to inflict physical injury on a patient so that's likely why they didn't take your word for no metal. Hope you're feeling better about it all by now and it was a helpful test.

Cg
September 29th, 2017, 09:44 AM
Guys, about a week after it happened, my tailbone is *fine* again! Yes! :cheer: Thank you for all the encouragement and well wishes along the way, I appreciate it so much!!! :D

Great news, back to focusing on important matters now! Like hair. :grin:

Sarahlabyrinth
September 29th, 2017, 02:41 PM
Guys, about a week after it happened, my tailbone is *fine* again! Yes! :cheer: Thank you for all the encouragement and well wishes along the way, I appreciate it so much!!! :D

That's wonderful news, Lapushka! You healed up fast:)

lapushka
September 29th, 2017, 03:14 PM
Great news, back to focusing on important matters now! Like hair. :grin:

LOL yeah! :lol:


That's wonderful news, Lapushka! You healed up fast:)

Thanks so much! :flower: Yes, my tailbone felt darn bruised to me from the fall, but the pain of that went quickly (maybe because I am already on medication for other issues).

marvel-lover
September 29th, 2017, 06:36 PM
I see your point, but I this is a Crockett Mountain fork, I know with 100% certainty that it is pure acrylic.

And I was so stressed about the hair, and having hair in my eyes, that I was really close to a panic attack, I worked really hard to keep that at bay. That does count as harm to me... I'm still stressed out about it and I slept really badly tonight because of the stressed state of my body. Oh well. Now I just have to wait for a week or more to find out the results... (do I have MS or not!)
Goodness, that sounds tough. I'm glad the test was quick, and I hope you find peace in the results! Have you thought about maybe taking some time (30 mins-1 hour) before bed to pamper yourself? Take a nice bath, or read an interesting book, maybe sip some soothing tea? It might help lower your stress levels and help you sleep.

Guys, about a week after it happened, my tailbone is *fine* again! Yes! :cheer: Thank you for all the encouragement and well wishes along the way, I appreciate it so much!!! :D
I'm glad you're feeling better!

Update on myself: I ended up feeling most comfortable in a braid that I pulled into a bun after I was finished with the test. I did, however, purchase an octopus clip that I've been keeping my hair up with when I'm at home. Love it! Now I just have to figure out how to pull my hair up and brush it without my heart monitors beeping at me lol

lapushka
September 30th, 2017, 03:36 AM
I'm glad you're feeling better!

Update on myself: I ended up feeling most comfortable in a braid that I pulled into a bun after I was finished with the test. I did, however, purchase an octopus clip that I've been keeping my hair up with when I'm at home. Love it! Now I just have to figure out how to pull my hair up and brush it without my heart monitors beeping at me lol

Thanks so much!

Hair can be a pain in the butt, especially when you're dealing with medical equipment. I'm glad I had hair between chin and shoulder when I went for my SSEP years ago. Phew. All those sticky bits in the hair. On long hair that would have been a right disaster. I'm glad you're holding up quite well under the circumstances, marvel-lover! Let's hope the test results are great!