Should I cut? (illness related and long)

[candlesandfish]

Hello, I had a thread a few months ago asking for help with my hair given that I'd recently relapsed/had a bad flareup of a couple illnesses. The bad ones for me (I have a number of them) are ME/CFS (commonly known as Chronic Fatigue Syndrome) and Fibromyalgia. I've also got hair down to my butt :P It's not classic length but it's very close. Regardless of anything it needs a reasonable (1" or so) trim since it's been a few months since I had it done last and it grows more than an inch a month normally - and the splits are getting awfully tangly.

Healthwise, let me explain. For those unfamiliar with ME, I feel tired and sore all the time. It's like having the flu or mono/glandular fever...for four and a half years. I'm fighting it and I've managed to do a lot in the last two years, but this year it came back and kicked my butt very badly in April/May and I'm still pretty sick. I have days where I wake up and just the idea of getting up and dressing seems like way too much effort even though I can't sleep and I'm bored lying in bed. The last few days have been particularly bad and I've been doing things but my body has been yelling at me for it - even just simple things like catching a bus (one I've caught every day for the past five years) to the city and sitting through a few lectures, because if I don't I'll get behind and never catch up. I see a doctor once a month, a specialist once a week (although she's on holiday until September which is bad) and a physical therapist (who is doing wonders) twice a week, and that is pretty tiring and then you add 6 hours of classes a week plus travel time onto that. I'm exhausted and I've only been back for two weeks.

That said, I have this hair. I'm good with it - I keep it braided a lot of the time, never sleep with it down, have a silk pillowcase, put treatments through it when I can, wash it once a week (stretching washes is not a choice when just having a shower exhausts you!) and wear it up whenever I can. It looks lovely. It's quite fine, so it's not until recently that it's started bothering me, since it's not particularly heavy.

But. Braiding tires me out, and on a day when just getting out of bed and pulling on socks, jeans, underthings, a shirt and a sweatshirt seems like too much effort, you can imagine how much I don't feel like I can braid. I feel embarrassed to go out of the house with hair that looks like that though so I tend to dump hats on top. This works, but my hair is getting heavier...so the hats fall off the back. Buns work but are heavy, and I generally have to redo them at least once during a day - I can't do pinned buns at all (too much hands above my shoulders) unless it's for a special occasion, and the ones I do most are very simple ones like the Pencil Bun done with a pair of matchsticks from mairzydozy or their forks.

Fibromyalgia causes nerve pain among other things. I have pain in my muscles and hands and feet a lot of the time, especially when I'm feeling tired, even more when I'm feeling tired then push through it because I have to or because I'm stupid (or both!). Apparently this has started applying to the roots of my hair, too. So the weight of my hair is making my head hurt. Braids help a little but not a lot, they're still heavy, and I almost always manage to braid a section a little too tight, no matter how loose I try to braid, so it hurts like crazy until I find it and loosen it (if I can).

I don't really want to cut my hair. I like it long and I love the feeling of it on my skin, and I wouldn't go shorter than waist length. But that would be 8-10" of hair...and I haven't had hair that short in years. My boyfriend wouldn't mind - as long as my hair is 'long' he doesn't care, when we started dating I had BSL hair and it's grown since then. My Dad's suggesting Waist or at longest TBL. I'm not sure.

Added to it all is that I'm shedding pretty badly. My hair is quite a lot thinner circumference-wise, I can feel it, and that scares me. It might be a "i'm 23 and hormonal" thing, it might be being deficient in something again (this happens a lot) or it might be thyroid or something. I'm seeing the doc next week on Thursday so I'll ask him then, but it's really worrying. Just taking my braid out I'll have 6 or so hairs, all from the same area (usually), just in my hand - this never happens normally. One or two maybe but not six...

You guys know what dealing with long hair is like. Advice, please?

[archel]

Hi there - I am a fellow FMS sufferer and while I have more of the fibro symptoms than the CFIDS, I definitely have an autoimmune component (elevated ANA) and the exhaustion can be crushing. That being said, I will say that I love having long hair with this condition because when I had the bobbed cut (2-3 years!), I had to style it with a blow dryer every time I washed and it KILLED my arms and neck and the heat would make me feel like I was going to pass out. I love that with long hair I just wash and air dry. So, that's a factor. That being said, I've never been longer than waist length since I had FMS. I think it would get difficult any longer than that. Perhaps having it waist length is a good compromise? Less time to braid, easier to wash, but still long and beautiful.

Are you taking supplements? I take quite a lot, it's a pain but it helps some.

[Cassie 123]

Do you think your BF or one of your parents would be willing to cut a little at a time for you? Say 2-3" off at first, then see if you can live with it for a week or two, then another 1-2" if necessary, and so on? Then you could avoid the regret of hacking off too much at once. Some people have had success with the Creaclip (http://www.creaclip.com/) as a guide for trimming.

HTH :) :blossom:

[knittingyogini]

Or what about someone one to braid it into some the styles that folks talk about wearing in the hospital for several days? Would something like hair taping be too unusual? It looks like it would take sometime to do, so I'm thinking you'd want an assistant. But, you might only have to re-do it every couple of days.

[dulce]

How about using a pretty flounced satin or silk sleeping cap[sold on ebay] when sleeping or resting in bed?No tangles form. When up, instead of braiding,coil or twist your hair up[no elastic or other pins needed] and secure with a ficcare or beak clip or a flexi 8 clip,in an bun style updo,takes 2 seconds and doesn't tire the arms out.You can match your clips to your earrings and it can look quite dressy.

[PeacenQuietGal]

Yes I was thinking of a coil too, only something kind of like a side pony, but coiled and secured with an elastic and scarf. That way you would not have to raise your arms too much, or brush too much.

I hope your hair continues to give you joy and pride :kitten:
And I hope you have a nice loyal pet to snuggle up with you while you are resting.
When I was recooperating from my hysterectomy my dog would lay by me, and just her presence and the sound of her breathing was very restful for me, so I wish you the same :)

And I love the idea of the pretty sleep bonet because it will make you feel special and lessen the tanglies/brushing/combing work that may tire you.

[archel]

I agree with the pet sentiment! Having an illness that can land you in the bed for days is much better when you have a snuggly friend to hang out with you. Oh and Netflix is good, too. :-D

I love the hair taping idea. If you want it to be subtle you could use ribbon the same color as your hair, or to be more elaborate use a contrasting color. My sister did hair taping after I showed her the youtube video and she was able to leave it in for 4 days!

[Macaroni]

I have fibro and CFS, so I sympathize with you.

I agree that a gradual trim of 1-2" at a time might be the way to go. And a coil bun held with spin pins or hairsticks might be good, too.

I don't know where you live but have you considered acupuncture for your symptoms. I had a course of 10 treatments and it alleviated some of the major pain and fatigue. I still find that when the barometer is dropping, I hurt more.

(hugs)

[dulce]

Also 1 do a braid down my back but only braid maybe 3 inches then attach a flexi to it leaving a very long tassel.No elastics are needed at all and it holds all day.

[dulce]

1n leslie sansone's 3 mile power walk dvd she mentions about one of the back ground walkers,then 60 years old ,improving her pain and range of motion from fibromyalgia from gentle all range motion exercise such as her tapes.1 hope you will check out leslie's tapes-they are effective ,incredibly safe and you can go at your own pace.My mom had fibromyalgia so 1 know what it can be like. Good luck!

[dulce]

To clarify the buns, 1 mentioned are very low on the head[like a chignon at the nape],less tiring on arms than higher or mid height buns.

[stefalupagus]

I don't really have any suggestions that other people haven't already made, but I wanted to offer support. My best friend has lupus and a severe gluten intolerance. Before the Celiac was diagnosed she was getting "glutenated" almost every day, and she was beginning to suspect that she also had fibro because of some of her symptoms. I have seen her on some of her worst days, days when holding her head up was too tiring, and I know how had it's been for her.

This may bring you some encouragement, though-- she's a successful journalist, and she just took a trip to South Asia to research for a book she's writing. She's married with a house and a couple of dogs, and she has a very full, healthy life. I want you to know that there are lots of other people who have many of the same challenges you do (we're 25-- not too much older than you are), and that you're not alone in this. /hug

[dulce]

The great thing with leslie's tapes is you can start with only 5 minutes and increase your time slowly as you feel better.Getting in full range of movements daily is the trick.Check with your doctor to see if he would think it helpful in your case.

[Mesmerise]

Have you tried just twisting your hair up and clipping it in place? I can't describe it better than that! What I do is I twist my hair up, just like I would do one of those peacock twists that are suitable for shorter hair, but because my hair's longer, I just sort of loop it around a bit and then clip it in place. It's not necessarily the fanciest of styles, but it doesn't take long!

Aside from that, I agree that maybe you should get a bit trimmed off and see how you feel. Start with 2-3", gauge how you feel, and if you're okay get another couple of inches trimmed off.

The worst thing that can happen is you get back to waist length hair, and as we all know, hair grows! If you find it's too short for your liking at waist, then you can always re-grow!

[silverjen]

I have mild CFS. Huge, gentle hugs from me. This condition sucks!
I would cut back to waist. We have to conserve our energy when possible, and prioritize where we spend it, and having more manageable hair would be one less stress on your body.

Best wishes to you... PM me if you need to vent!

[Emerald88]

I am sorry for what you are going through. From what you posted, and I quote, "I really don't want to cut my hair." that it may actually make your situation worse if you cut and are unhappy with it. If you want to cut it, I would trim only an inch at a time and see the longest length you are comfortable with. I personally don't find it any more difficult to take care of my hair now at mid-thigh than I did at waist. Sure, some styles work better than others, but as far as washing and styling time spent on my hair, it is the same.
I think the perception of "weight" of the hair is mostly how you secure it. If I have mine too tight, it can sometimes feel heavy and cause me headaches. A tight ponytail always gives me a headache. A braided cinnamon bun wrapped loosely and secured with claw clips distributes the weight nicely. It is hard if you aren't feeling well to put much energy into your hair, but hopefully you can experiment with some of the suggestions everyone has made and keep your hair long because it sounds like that is what you really want. I hope you will feel better soon.

[candlesandfish]

Thanks all for the responses :)

archel: I'm taking LOTS of supplements. Zinc, manganese, Vit D, a craaazy multimineral thing, masses of Vit B stuff and something that's supposed to help mitochondria but I'm not sure how it works it just does. And a herbal tonic I'm supposed to have with meals but with my disorganised life most of the time it doesn't happen.

I wouldn't go for a bob, too drastic, but ordinary style long hair maybe...waist length or so. My hair grows fast, so I can always grow it back out.

Cassie: I wouldn't get my family to do it (my boyfriend maybe, but probably not) but I have two trusted hairdressers who would do the gradual thing for me if I asked. Good idea.

Knittingyogini: that would work if I didn't have to go out. Those styles do alright for hospital, but I'm out in public in the middle of a state capital a lot - I need to not have frizzies everywhere. That, and except for the weekends when I stay with my BF, I've got noone I'd trust to do my hair like that. My mum just about kills my hair just braiding it normally...

dulce: the sleep cap is a thought, although I already use a silk pillowcase, would it make more of a difference? ficcare style updos make my roots hurt - what I was trying to convey in my post is that the roots are hypersensitive, so I have to be careful. I've never used a real ficcare though, maybe that would be different? I have the fakes (including a gorgeous jewelled one) at home though.

Thanks for the suggestions with the tapes but I've got a good exercise/physical therapy routine with my doctor and I think I'll stick to it :) I'm sure they're good, I've just found something that works already and don't want to mess with it :)

Peacenquietgal: I do have a furry friend - her name is Koukla and she's a half ragdoll half moggie kitty and very fluffy. My parents got her for me a year after I was diagnosed since I am home alone so much. She's good company in bed, she's never known me to not be sick at all and very snuggly.

Archel: hair taping might be an idea, I'll see if I can ask DBF to give me a hand with it. I couldn't do it myself but he could, if he had the right instructions. 4 days you said? Hm.

And sadly no netflix downloads here...but I have a good tv (as of two days ago) and a nice long couch in front of it to lie down on :)

Macaroni: I've had some, and it helps. Not enough though, mostly just helps with the pain rather than the fatigue. But it is good for my muscles turning into golf balls!

Stefalupagus: thanks :) My sister's coeliac, so I know what that's like, and being glutened doesn't seem like fun at all :( She's been diagnosed about as long as me, yay for us lol

I have had times where I've been very successful even since diagnosis and hope to find them again. Patience is a good thing, I'm practicing... lol :)

Mesmerise: I've tried, but my hair just won't stay :( I have to do reasonably loopy twisty dos or it just won't stay put! It's very fine and slippery. On the upside, the pencil bun is pretty easy.

Silverjen: I'm definitely thinking so, or at least to TBL and see how I go. I don't need my hair this long and I can always grow it back when I'm feeling better I suppose.

Emerald: it's not that much harder to care for, it's just more tangly, and the thing with diseases like ME/CFS is that they make every action that would be effortless for a normal person ten times harder. So decreasing the amount of energy I'm spending on my hair a little is definitely worth it, since I have a very finite amount of energy per day.

I'd go slow though, no doubt about that. An inch or so at a time, see how I go.

The weight is frustrating because it's heavy even when it's down and dry, not just when it's up. It drags on my highly sensitive roots and its just all too much sometimes. A well spaced bun would work, but I'd need to be able to spend the time and energy (and hands at my head takes lots) to get it right. I do, most of the time.


I've had my hair in a braid for about 24 hours now and I'm going to sleep with the same one in, hopefully it will be workable when I take it out tomorrow.

[dulce]

With the silk pillow case your hair is still loose and moves around a lot as you sleep[toss and turn stuff] but in a cap it is loosely held and doesn't move much.For me,1 find 1 get much better results with a cap.Try it and compare to see what you think.

[WackyLisa]

My husband has fibro and I have a connective tissue disorder. For years I brushed and braided his hair and he'd help me with mine on my worst days.
His scalp is very irritable and the process of braiding and brushing got to be too much no matter what I did or how we stretched it. So I really feel for you.
My buns usually get held up with large claw or octopus clips. While I have trouble opening them the ones with silicone tend to hold well enough.
Do slouchy berets slide off as well? I'm guessing your scalp is too tender to clip them in place?
take care as best you can

[candlesandfish]

dulce: I'll have to look into it :) Thanks.

WackyLisa: Berets are okay, on good days. On bad days, nothing is okay, but you'd understand that. I have days where I just leave it in the braid because its easier, although it tends to felt if I do that.

Thanks for your kind words anyway :) You look after yourself (and your husband) too :)

[dulce]

With the beak clips or fakkares try a loosely coiled bun[no elastics] at the low neck[chignon] and don't pull hair back tightly but loosely when you coil to not put any pressure on roots.

[celebriangel]

Oh, hugs. Fortunately I am getting better from glandular fever but I know how frustrating it is when walking up the stairs seems like an insurmountable hurdle.

What I would do is this:

- Get the needed trim. Cut off all the split, tangly ends and this will make your life a lot easier immediately.

- Have a go at some of the weight-distributing styles listed here. What tools do you have at your disposal? Igor's blog - http://igorsbelltower.blogspot.com - is a good place to find comfortable, easy updo ideas because Igor has thick, knee-length hair which needs to be comfortable. I have heard that a pair of ketylos are excellent for both all-day hold and comfort.

I'll throw my own suggestion into the ring: http://www.untamedtresses.com/hairstyles-tutorials-51/clipped-wrap-bun-photo-tutorial-2502/ is JamieLeigh's clip wrap bun. These kinds of clips are good for distributing weight well.

- In the interest of removing unnecessary effort from your routine, could you start sleeping with your hair loose? If you have a silk pillowcase, your hair shouldn't tangle too much. I think Spidermom just tosses her hair over her pillow. Or Cinnamon hair wears a satin sleep cap from Sally's.

- Then you can make a decision about whether you need to go shorter. Hopefully, the trim + adjustments to your routine should make your life easier, enough so that you can keep the length. If it doesn't, you can follow the above advice and trim a few inches at a time until you reach a comfortable length.

Best of luck.

[Deborah]

I bet you would feel better and look just as good if you cut your hair back to waist, or maybe a bit shorter. You can still do the same styles and likely some more with your hair a bit shorter, and the lightness will feel good. Since your hair grows fast, you don't need to worry about cutting some of it off; you can grow it longer any time you want.

Some years ago my hair (not my health) was just bugging me, and feeling heavy and hot. I had a foot cut off, and it felt light and free and wonderful! I did not regret it for a second. It's hair; it grows back. :)

[MonaLisa]

I guess I'd cut it. waist is still very long. i wouldn't waste my energy on that with having such health issue :(

But you and only you know how you feel about it - and that is the only right answer :)

[Evalea]

I am so sorry to hear about your struggle!!! I am a fellow CFS/Fibro sufferer, although mine does not sound as severe as yours. I also have some other severe health problems. The day after I was diagnosed, 5 years ago, I had my waist length hair cut up to my chin. I hated it! It actually took more time and energy to take care of it because I had to style it everyday.

My advice - if you think you need to have it cut, that might be the best thing. I understand how much you love it, but I also know that sometimes you just have to listen to the warnings that your body is giving you. I also know that for me, sometimes I go through spells of depression where I want to cut my hair/quit my job or school/or simply give up on life. I try to not make decisions during this time and just wait it out until happier times come.

I certainly hope you get to feeling better soon. :hug:

[BlazingHeart]

I'm sorry you're having to consider cutting your hair. I am hoping I won't find myself in the same position - I have fibro, a connective tissue disorder, and (probably) rheumatoid arthritis, and it makes taking care of my hair difficult sometimes. I also have a tender scalp.

A ficcare vs a fakkare don't make a huge difference at the roots for me - both make me tender if I wear them often. I find a flexi much more comfortable.

My preferred easy style at this point goes like this: I grab my tips with one hand and find halfway down my length with the other hand. I put my tips near the nape of my neck, with the halfway point held up. Then I twist the halfway point so that my roots lay over my tips and hold them down, and then I use a flexi to clip it in place. Hope that description makes sense.

~Blaze