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View Full Version : Help please - Serious health issues and long (TBL+) hair



candlesandfish
May 10th, 2011, 05:54 AM
Hi all, this is probably going to be a bit long so please bear with me. I have two questions, but because this post is so long and they're such different questions I'll do two posts and hope that's ok.

First, I have ME/CFS (Chronic Fatigue Syndrome) and Fibromyalgia. My Fibro isn't too bad, but it gets worse as a result of the ME getting worse. The ME has been behaving itself for the most part for the past two years (I've been diagnosed for four) playing up over winter a bit but I've always managed, but this year it's completely bowled me over. I'm spending most of my life in bed at the moment, have done so for the past week, the weeks leading up to that I've been fighting my illness tooth and nail and finally I've given up, and am awaiting doctor's advice after he gets the results from a raft of blood tests. Doing this means that I don't feel physically ill or dizzy as often, but I still tire very easily, feel AWFUL in the mornings, have insomnia and wake up late, and physical exertion makes my muscles ache like I've done a crazy session at the gym - and that's just something like carrying home the grocery shopping, or giving my hair a thorough detangle and brush when it's got a bit matted from my not brushing it (although it's always in a braid).

I also have fine, slightly wavy hair (see hair stats in the sidebar - you guys have never hairtyped me, but I did a pretty good approximation I think) that is past tailbone and well on the way to classic and in pretty good condition. I get it trimmed every three months, don't straighten, use a treatment periodically, all the good things.

Here's my hair in October last year, my hair's a few inches longer now, about 1.5" off classic by my guess when i actually stand up straight but I don't do that much anymore :P
http://inlinethumb19.webshots.com/48146/2503425790100712226S600x600Q85.jpg (http://good-times.webshots.com/photo/2503425790100712226HRYuJi)

But long hair takes work. I don't want to cut it. I did last time I got sick (when I was first diagnosed) but at that point I had no idea of how to manage my energy and couldn't lift my hands above my head at all (I can now, but it exhausts me, so I do things like washing my hair late at night and then falling into bed), and my hair was also not in very good condition, despite being about hip length (the very middle was TBL, but it was a very deep curve). Bad splits and very thin from about BSL down...so I got it cut to APL-ish, and it looked like this:

http://i8.photobucket.com/albums/a36/kyrieflutter/th_P1010079.jpg (http://s8.photobucket.com/albums/a36/kyrieflutter/?action=view&current=P1010079.jpg)
(thumbnail, click to make it bigger, it was that or huge)

However, if I don't cut it, I'm not sure what to do about it. I haven't washed my hair in two weeks, although my boyfriend washed it for me...a week and a half ago. It feels like it, too - ew. I think I can wash it, but I've just detangled it (haven't brushed it since last Tuesday night, but it's been in a braid, taken out on Saturday briefly (not brushed) and rebraided) and it took about an hour, being gentle, I've detangled the lot but only really brushed half of it, and my arm muscles are burning. I plan to try washing it as soon as I've finished this post, and brush the other half.

Any advice on hair care that takes minimal energy (especially minimal time with my hands above my shoulders)? Having someone else wash it for me all the time isn't an option, I only stay with my boyfriend and his family on the weekends and even then the only option would be washing it over the bath which is terrible on both our backs (he's 6'3"!). He DOES understand long hair (he's got APL hair himself, and it's gorgeous) and can style if asked, but I don't think he wants to spend too much time doing it.

Stylewise I'm happy to wear it in braids and pencil buns (or braided pencil buns!) although if anyone else has suggestions I'd appreciate them. Also, does anyone have advice that will stop my hair matting up at the back? I spend my life leaning back on couches and pillows and in bed, and I get dreadlocks at the nape of my neck and on top of my head at the back.

Thanks and any help VERY much appreciated, particularly by my poor arms and hands which don't like the ME and FMS at all!

Lemur_Catta
May 10th, 2011, 06:18 AM
Hi, I am sorry you are having these issues :(
There are some things I would suggest...Would it be possible for you to shower sitting in a stool? This would make washing your hair easier because you wouldn't have to lift your arms to rinse your hair, you should lift them only to lather the shampoo and then the shower head would to the rest.
Another thing you might want to try is oiling your hair before braiding it, and rebraiding it every night so you don't have to spend so much time detangling. I guess 5-10 minutes a night would be better than 1 hour every week, but I can't be sure this is true in your situation. A side braid should also be easier to do, because you wouldn't have to lift your arms at all.
Another thing you might want to try is using silk pillowcases, or silk scarves to put on your head or to drape over the couch when you are there. This would prevent tangles, and so you would spent less time on your hair.

I hope you don't have to cut your hair, it's beautiful :)

sherigayle
May 10th, 2011, 06:24 AM
I want to give you some gentle hugs and say I know how you feel. I have Fibromyalgia, arthritis and something new that the doctor hasn't found a diagnosis for yet. Braiding can sometimes take too much energy and just hurts my hands and arms too much. I do low cinnabuns held with amish pins so nothing sticks out, when I am flaring. I can make them pretty flat to my head and they hold well. I also keep the ends oiled so they don't tangle as much. Cutting it isn't necessarily the answer. Unless you cut it super short, your hair will still take almost as much time and effort to care for. Have you considered going to a salon to get your hair washed?

candlesandfish
May 10th, 2011, 06:42 AM
Lemur: thanks!
Silk pillowcases are a thought. I don't have a lot of spare cash, but having one would probably be nice. Maybe if I buy from the internet, since the Australian dollar is very strong which makes things cheaper.

Sitting on a stool wouldn't make a lot of difference with relation to where the shower head is, since I'm 5'1" and short anyway, but it does make it less tiring with the standing. It's a lot of hassle though (I tried last time I was sick) and most of the time it's not worth the effort. It'd be a good thought if I was a bit taller though.

Oiling my hair is a definite thought, I've got a bottle of sweet almond oil and my hair likes it. I'm terrible at figuring out how much to use and end up looking like an oil slick half the time, but I suppose being bed-bound is a good chance to experiment - it's not like anyone will see me :D

I do a single braid down my back, but low, because my brain is 'foggy' because of my illnesses and I have a gas stove, and have to at least reheat my food for one meal a day if not two, and the last thing I need is my hair catching fire due to my inattention. Side braids are good though for sleeping :) Much less effort! I only do the top three or so braids actually at the back when I braid down my back, too, and pull the rest over my shoulder. It's not tight and nice and neat, but it saves my arms which is worth it.

Sherigayle: gentle hugs back! It's so nice to hear from someone who knows what it's like. When I'm flaring I tend to get someone else (sister - who can braid because of her horse, so does lovely dutch braids, but isn't the most cooperative, boyfriend or random friend I've begged) to braid it and leave it in that braid for as long as it takes (like the last week). Looks like a mess and takes a while to detangle, but it works, sort of. I like cinnabuns but I find them uncomfortable if I do them low and then lean back on my pillows, it's all a bit lumpy. I have some 'matchstick' chopsticks from mairzydozy that I use to secure something like a pencil bun though and that works, and they take very little effort to use which is good. Is there a trick to doing them low and having them comfortable?

Going to a salon to get my hair washed is a thought, but I'm a bit afraid of how they'll treat my hair as well as the fact that I have a LOT of hair (it's quite thick when it's all together, and it's not that far off classic) so I'm not sure if it would fit in the bowl! That, and I'd have to get there, and pay them. I'm dependent on my parents since I can't work or study (study would make me eligible for welfare payments of a kind) and getting on disability here is a nightmare with ME since we're not 'that sick' *rolls eyes*

Thanks for all the suggestions, and the sympathy!

Toadstool
May 10th, 2011, 06:49 AM
I wish I had answers for you- I don't but I just wanted to say how much compassion I have for you in your situation. And I feel angry on your behalf that ME isn't recognised in Australia for the purposes of disability.
The only vague comparison I have is a year of back pain due to a slipped disc that I had surgery on, and then being incredibly weak for a couple of months after my hysterectomy. So I know what it is to be in pain and lack energy, but only short term.
I hope your blood tests show up something that can be easily treated and help you.
Gentle hugs.

candlesandfish
May 10th, 2011, 06:56 AM
Well, it's not entirely unrecognised, it's just a lot harder since there aren't nice visible symptoms that show up on medical reports.

Thankyou for the sympathy and good thoughts :)

pepperminttea
May 10th, 2011, 07:02 AM
First things first: :grouphug: Sorry you've having such troubles; I can only hope things get easier.

Another vote for silk pillowcases. Our hairtypes are similar, and the silk really helps reduce matting for me. It took me a while to adjust to sleeping on such a slippy fabric, but it's been worth it in the reduced detangling time.

I don't know how you feel about 'cones, but it might be worth giving them a try - just on your length, nothing too heavy. If you're averse to 'cone-y conditioner, maybe just a dab of 'cone-y leave-in after an otherwise 'cone-free routine, while your hair's still damp. That would help with detangling, but without the lint-gathering factor of oil. (You could use just 2-3 drops of oil too, before you applied the leave-in, then you're doubly covered. :) )

pepperedmoth
May 10th, 2011, 07:19 AM
Hmmmm. What if you tried the shower-chair with one of those detachable, mobile shower heads? Then you could sit, hold the shower head in one hand, and just lean forward to rinse off your hair.

You're flaring now, so whatever you do, don't decide as if it has to be a permanent solution. You could go water-only for the interim, maybe a vinegar rinse to cut the greasies, and just wait it out.

Good luck! I don't have CFS or fibro but I've battled depression so I know at least a little bit what it's like to wander around in a fog feeling like I've just been hit by a truck. Take care, feel better soon, hope your doc figures something out for you.

Firefox7275
May 10th, 2011, 07:21 AM
Sorry to read how badly you are suffering. :(

I do my grocery shopping every second week and either get a taxi home, someone else drives me or I get a home delivery. This method means I spend less that I did a few years ago! In the UK supermarket delivery drivers will bring the groceries into your kitchen if you are not able to do so yourself, and taxi drivers will bring stuff to the elevator if you ask nicely (apartments). I deliberately stock up on heavy/ longlife items when I do this so I can pick up fresh/ light items in between. You can still eat healthily this way - I buy dried fruits, canned fruits, nuts and seeds, canned pulses, canned tomatoes, dried milk, canned evaporated milk, eggs, cheeses, onions, potatoes. Also frozen fruit and vegetables as there is no preparation required and no waste, but not everyone has a freezer. Sometimes I cook from scratch but often I throw stuff into my slow cooker or microwave or eat a cold meal. Is this an option for you? :shrug:

I always wash my hair over the bath and when my back is niggling I kneel. I then rest my elbows on the edge of the bath which, for you, could help support the weight of your arms? Depending on the layout of the bathroom your BF might be able to kneel next to or perpendicular to you. I love Batiste dry shampoo for stretching washes and leave-in conditioner instead of wash out, which means far less time rinsing over the bath and easier detangling! Some of the regulars find diluting shampoo means you need to scrub less to get your hair clean.

I just started using these 50% silk pillowcases on eBay (http://cgi.ebay.co.uk/50-Silk-50-Cotton-Standard-Pillow-case-19mm-1200TC-/370476038774?pt=Sheets&var=&hash=item950381eceb) which are very reasonably priced, and you pay the same postage for one or two. :cool: I am guessing they would also combine postage if you bought more items, I have found them helpful in answering queries.

celebriangel
May 10th, 2011, 07:35 AM
Oh, I am so sorry to hear that. I can't imagine how hard your situation must be, but I had glandular fever recently, and although the symptoms of the illness are gone, I feel totally drained of energy in a way that's taking *forever* to heal. I need my 12 hours of sleep a night, often nap in the afternoon (for up to 3 hours, especially if I get less than a full night's sleep), and find the *warm-up* at my ninjutsu class burning my muscles.

For me, this is terrible, but I can still do most basic things, I just have to be careful with my energy. I feel for you in your position so much; while I actually had glandular fever, I couldn't walk up stairs or eat most of the time.

Do you really need your hair to be ungreasy? Because it will adjust. Pre-illness, I used to wash my hair every other day; now, it's once a week, because I didn't wash my hair for weeks on end. I would worry much more about the tangling than the lack of washing; after about 6 weeks your hair will adjust. My DBF washes his hair about once a month, and it doesn't get greasy in between. Even if your hair does get greasy, the hair oils will help it not tangle.

If you're going to do this, you could introduce a light coney routine - because you wouldn't get build-up and detangling would be easier. For detangling you could also get a Tangle Teezer - I adore mine; it turns a difficult, 20-minute detangling job for DBF into a few quick strokes (less than a minute). No damage for me or DBF; it is also very light and ergonomic for the hands. It really is a great labour-saving device; torrin paige on youtube has a great video - it's her second vlog - where she shows the difference between comb detangling and TT detangling. Be not afraid of the weird sound; I shed less when I TT detangle than comb detangling.

What you really want is a *satin* scarf/pillowcase, no? Silk is a fibre; it comes in many forms. Satin is a weave, a way of creating an extremely smooth fabric surface, and can be achieved with many types of fibre. If your budget is tight, you could just get a large square of polyester satin fabric and drape it over your bed/chair backs, enough even to cut out a square which could be used as a scarf.

Oh, I've just thought of something! Cinnamon hair sleeps in a sleep cap which she buys; no braiding, she just stuffs it in the cap. You could wear that on days when you're too tired to braid. Her video is here:

http://www.youtube.com/watch?v=OQPVMT8k9sE

Internet hugs to you. I hope things get easier for you soon.

silverjen
May 10th, 2011, 07:39 AM
I'm so sorry. I wrestled with mild ME for years, but I was never as bad as you are. Even so, it was incredibly frustrating. The condition eats your life, or at least that's how I felt. I know how important it is to hang on to what you can--like your hair.

You've gotten a lot of good suggestions. (LHC rocks!) If I were in your position the only other thing I might do is get my hair put in a ton of tiny braids. You can still wash your scalp, and your hair would be protected from tangling. You'd have to get someone to do it for you, which may be tricky. Living here I'd try going to an African-American salon, but I don't know if there's anything like that in Australia.

Finally--ME can improve! I found pacing my activities to be the most effective technique. If I could stick to my pacing, which can be difficult, I did better. Here's a link to a good description of the technique:
http://www.fatigueanswers.com/cfs.html

Hugs!

Anje
May 10th, 2011, 08:02 AM
I mostly want to offer (gentle) hugs. My younger brothers have both had CFIDS for a bit over 13 years now, and I got sick but recovered from whatever the disease was that triggered it in them. FWIW, they've gotten a lot better than they used to be, though they'll probably always be spoonies.

I'll second the idea of silk or satin pillows, or even a silk scarf that you can throw over a surface behind you. You might be able to wrap your hair in one, alternatively.

Lengthwise, you might want to stay at a length short enough that you don't sit on it. Other than that, I haven't been at a length that's any easier to care for than any other length, so I can't really advise you that anything other than a close-cropped cut will be easier.

Have you tried doing your detangling when your hair is soaked with conditioner? That might help the process along.

Madora
May 10th, 2011, 08:17 AM
@ Candlesandfish..

So sorry to read of your difficulties. It must be so frustrating to want to care for your hair and grow it longer..and to deal with the stress of your condition. Sending ((hugs)) your way!

I've found that preparing my hair for sleep was a cinch if I did the following (in the bent at the waist position):

1) brought all my hair in front of me (like a curtain)
2) detangled thoroughly
3) took my wide tooth comb and deeply bent at the waist, combed the hair into a ponytail, then divided the hair into 3 sections, then loosely braided the sections and secured w/hair friendly elastic.
4) Took the braid and formed it into a bun that sat on the top
(not side or back) of my head..and secured it with long crimped hairpins (not bobby pins).

I had been wearing my long hair in 2 braids for decades..and always had residual tangles when I got up. However, when I switched to the braided bun on the top, the results were astounding...99.9% tangle free! I was amazed!

Wishing you good luck on your hair quest!

lapushka
May 10th, 2011, 08:21 AM
Something to consider when your hair is oily. I have no idea if it is but if it is, short hair (particularly above APL / SL and wavy) is going to be *way* more maintenance than long hair is, seeing as you'll have to wash it more often. On top of that, hair that short you probably also need to style for it to look halfway decent, which means lots of extra effort. Longer hair, you just put up and out of the way and it's no big deal. You just have to find a length where it's comfortable for you. If TBL isn't comfortable, trim slightly and find that ideal length.

Gentle hugs! :grouphug:

candlesandfish
May 10th, 2011, 08:43 AM
AAAAAAARGH FIREFOX JUST ATE MY POST! I'm going to reply in a series of posts now, so my really long one can't get eaten :(

Thankyou all so much for your advice and being wonderful, I love this forum! I wish I'd come here for advice earlier :)

I am out of the shower now and clean, my knees are killing me (which is new, I haven't had fibro pain there before) and if I walk barefoot on hard surfaces I get pain shooting through my feet (hooray for slippers) but I am clean and it's wonderful. I'm now snuggled up in bed which is the most comfortable place on earth, especially since I remade it before having my shower. Glad I did!

The silk pillowcase suggestions sound good, and I'll look into them all. I've found a good quality brand for $AU60 which is expensive but not horrible, and my SIL has one and loves it so it's a definite thought. I also like celebriangel's idea of a square draped over my bed or couch, that would help a lot I think. There's a haberdashery store that's easy-ish for me to get to on the days I have to go out, so I might see what I can find there next time.

pepperminttea: I discovered when in the shower that I'd left my shampoo and conditioner at my boyfriend's house (yay, brainfog!) so took your advice and tried the cone thing, since my Mum (who is in the USA currently and won't miss it) had VO5 in there, for 'fine and flat hair'. I've tried it on the ends before and they've liked it, so I did the lot, and it seems smooth and untangly but the proof will be when it's dried so I'll let you know in the morning. I'm not sure that I dislike cones particularly, but I don't like SLS, and cones and SLS tend to be in the same products. I'm allergic to it, and my hands aren't particularly happy with me, but not as bad as some reactions and hand cream should fix that.

pepperedmoth: unfortunately my shower head is fixed and I can't figure out a way of changing it, so I can't try that. I do have an attachment for the bath that's a sprayer like that though, which might be a thought to take to boyfriend's house and try (here in Australia most showers and baths are completely separate). I'd have to find it though - I haven't used it since the last time I was this sick :)

candlesandfish
May 10th, 2011, 09:03 AM
Firefox: home delivery is available here, but I think it would be more trouble than it's worth due to my evil evil driveway. I can't see a delivery truck getting up it without taking out the fence, to be honest - we've had trucks get up there before but the drivers always curse our driveway all the way up and down! My sister (who I live with) can take me grocery shopping, but she's also got fibro and (very mild, at least compared to mine) ME, and because she pushes through it the fibro pain flares up for her a lot, and she's also not the most...generous of people when it comes to thinking of the sister who she's sharing a house with. She's home tomorrow though so I'm hoping to work out a menu for the next few days, draw up a shopping list and we can go shopping. I do find it easier to do one big shop but it's negotiations with my sister that are tricky. I can't go on my own, it's just not possible at the moment.

I try to cook meals that don't involve a lot of preparation, or what preparation they need I can do sitting down at the kitchen table, and I have a high chair (like a dining chair but with stool legs) which is a good height for cooking at the stove which is wonderful. I like crock pots but ours makes a horrible burned rubber smell when we turn it on (cheap and nasty and at least ten years old) which makes me feel sick so I don't use it. I made a good recipe the other night which involved browning some chicken, then sauteing an onion, garlic, rosemary and chilli in the pan (with the chicken removed), then dumping the chicken back in with a tin of tomatoes and some cheap white wine. That on risoni pasta or rice is wonderful and dead easy energy-wise (especially since I've found a brand of chicken that is pre-sliced). Soup is also a good option, just simmering away on low.

I can't kneel easily at the bath because the hard floor and my knees, combined with the fact that I'm slight to begin with before I lose the weight I always do with ME...ow. Maybe with the shower attachment I mentioned above it might be easier though, we'll see.

celebriangel: *gentlehugs to you, too* - glandular fever is very similar in symptoms to how I feel with ME, that's what the doctors thought I had for several months until they actually went to test me for it :) Definite sympathy on the building up energy slowly thing - been there, but it's worth the effort.

As for needing my hair to be ungreasy - well, no. But I do need to feel vaguely human or I just get depressed. I hang around in my pyjamas all day and Professor Snape hair doesn't help me feel pretty ;). I normally only wash it once a week anyway, I have a preexisting genetic condition that affects my skin that I've had since birth (aren't I lucky) which means that water + my skin isn't a great combination anyway so I stretch showers too.

I must look into the tangle teaser, I've heard good things about them, and I usually detangle with my fingers which isn't very practical now. Need to look online since I haven't seen them for sale here. Ditto on the sleep caps - very miss muffet, but when sick that's a brilliant idea :)

silverjen: yeah, it eats your life. And that's exactly why I'm determined to keep my hair if I possibly can! I cried for three days when I got it cut four years ago and it's taken me a long time and a lot of work to get it to this length now.

Lots of tiny braids is an interesting thought, but it would take some definite research since we don't have a large African population here. Lots of mediterranean and otherwise European, and lots of Asian students, but not that many African people yet. We have some Sudanese, but they mostly wear extensions and I haven't seen a hairdresser catering to them especially, though I'm sure they must exist. I used to know a lady who had two daughters that she adopted from Ethiopia who did amazing cornrow braids on each other's hair, but I'm not sure whether they'd be interested in doing mine since they're both 17 now I'd think and I haven't seen them in about eight years. But it's a thought.

I'm trying to get my head around pacing. I recovered last time without it, but it took a long time and trial and error. I'm a bit confused by it but I'm hoping I'll get a grip on it and be able to reclaim my life a bit :) thanks for the link!

candlesandfish
May 10th, 2011, 09:21 AM
Anje: you said spoonie! :D I want to hug you now. Sorry to hear about your brothers, 13 years is a long time. I've just about accepted that I'll always be a spoonie as well, but it's a lot better to be a spoonie that can live a roughly normal life.

I think staying above sitting on it is a good move too, although since I wear it braided most of the time I think I could get away with classic length but no further. The thing that makes shorter hair easier to care for for me is mostly the weight when wet thing - that, and having to reach to brush or wash the ends. My hair seems to be a sponge and looooves water, and it's HEAVY when wet. Having it short made that easier, but I don't want to cut it, it looked weird at that length, hair on me really needs to be in a bob (well, it looks good on my sister, who has a very similar face to me) or BSL or longer. I like it long so I think it's worth the effort.

Conditioner doesn't seem to help my hair detangle that much, it's mostly just a patience thing. My friend Emily watched me do it last Tuesday and informed me that my method is mesmerising, much to my amusement. It's just a case of being methodical and gentle, but it is time consuming and means lots of holding my hands up, unfortunately. I'm also mildly allergic to most kinds of the stuff (SLS and any sulfates are BAD for my skin) so spending extra time in the stuff undiluted by water is probably not a good idea. Oiling would be a better option but I'm not sure if that's a good idea for detangling?

Madora: thanks for the suggestion, I'll have to try it at some point :)

Annalouise
May 10th, 2011, 09:37 AM
Hi Candlesandfish :)
Your hair is beautiful and I love your icons.:)
I had chronic fatigue syndrome when I was in my 20's. (I am now 40). I had undiagnosed Celiac Disease. Anyways, I'm very sorry to hear that you are ill.

I have never had hair as long as yours, so I can't give you suggestions but one idea as someone else suggested, if you can afford it, would be to go to the salon once a week, or once a fortnight, for your hair to be washed and styled by someone.

You could ask them to braid it and bun it in some style that you can leave it in for a week.

I don't know if that is even possible? I think so. And if you put a satin sleep cap over your bun I think it could stay in for a week.

If that is too expensive then maybe you could ask a friend or family member to wash and style your hair once a week for 10 or 15$ or something you could afford.

And, what you could do is wrap a silk scarf around your updo, and then just take it off when you are going out in public. When you are sleeping at home the silk will protect your hair from getting tangles.

As someone who has had CFS I wouldn't suggest you style your hair yourself because it will be too exhausting for you. Have someone else do it for you and wear a silk scarf.:)
May God bless you.

candlesandfish
May 10th, 2011, 10:02 AM
Thanks Annalouise - I like the icons too :) That wall has the Virgin Mary and Christ at the top, and all the other icons are the Patron Saints of my family members, plus my Dad's favourite Saint and the Patron of my parish.

Coeliac disease sucks, my sister has it. Glad you found out what it was! She's been diagnosed with that as long as I've had ME, but I don't have it, you can be sure we tested for that pretty quickly when we found out she had it!

Having someone do my hair in an updo is an interesting idea, but I'm a bit worried that it'd be uncomfortable for me while I sleep. That's why I like braids - I can pin them up quickly and easily even with the CFS (I have matchstick hairpins from mairzydozy and they're small but hold like crazy) but I don't notice them while sleeping.

I love the idea of paying someone to do my hair though...I wonder if any of the hairdressers I know would know what to do with hair my length. If I want to look really nice to go out I get Andrew (boyfriend) to do my hair, he does a lovely job (he's a jeweller and is good at attention to detail) and among other things does some of the nicest woven buns I've ever seen. I have a silk scarf, it might be an idea to start wrapping my braid at least :)

pixi_stix
May 11th, 2011, 02:53 AM
I have fibromyalgia secondary to having hypermobile ehers danlos syndrome. I know just what you mean about trying to maintain long hair when you are so fatigued and your arms just won't reach to the back of your head. When I am washing my hair, I lean my elbows on my knees, holding my head foreward I can reach my head without straining my arms too much.
There's a few ideas on this site for bathing aids. http://www.betterlifehealthcare.com/products.php?search_filter=0&catID=15&subID=37&pg=1&set_records_per_page=15&show_offers=0&search=0&search_text=

I have just started taking a supplement called D.Ribose. It has helped some people with thier chronic fatigue. I have only taken it 3 times so far, but each time I was able to go outside. This is amazing considering this year I have only managed to get outside once a month.

candlesandfish
May 11th, 2011, 04:37 AM
Pixi, that's a brilliant idea. It might work to sit on my stool in the bath and do that with the shower attachment for water.

I am TOTALLY trying that next time 'round, my knees and feet were killing me when I got out of the shower last night, never mind my hands and arms...

Firefox7275
May 11th, 2011, 07:19 AM
AAAAAAARGH FIREFOX JUST ATE MY POST! I'm going to reply in a series of posts now, so my really long one can't get eaten :(

Thankyou all so much for your advice and being wonderful, I love this forum! I wish I'd come here for advice earlier :)


It's lovely to read you being both positive and realistic about all the suggestions. :D Could you maybe kneel on a couple of pillows or cushions at the back or are your knees to painful to weight bear?

Off topic again but I switched from Firefox to Opera browser for forums because the back button takes you back to previous page(s) as they were (yes including responses typed but not posted!). :cool: Might help you when you are wanting company online but too exhausted to deal with rethinking and retyping?

candlesandfish
May 11th, 2011, 08:42 AM
Well, I did ask for help, didn't I? And I've been there done that enough as a 19 year old (when I was first diagnosed) to know that listening to advice is a good thing (with the exception of one doctor who had me on a medication regime that was physically impossible to keep up with and didn't help, so I stopped taking any of it, which made it worse...) so I do.

Opera's a thought, but I like firefox for too much to give it up I think :(

Pillows by the bath might work, but I'd be afraid of what would happen if I got them wet. Mould makes me more sick, so mouldy pillows anywhere in the house would be a bad thing. I think the idea of sitting with my arms on my knees in the bath is the most practical solution at the moment, or at least I'm willing to give it a try :) I've tried towels by the bath but they don't give enough cushioning (and my Mother in Law objects to the use of perfectly clean towels on the floor, and I don't really blame her!) and I lose so much weight when I get sick (I'm quite slight already even beforehand) that it really hurts to dig the bones into anything, let alone the fibro pain.

Actually, other FMS/ME/CFS/whatever people, do any of you find that you lose a lot of weight? I was 39kg (about 85lbs) last time I got sick, and I'm 5'1"ish, and I got up to 54kg (119lbs) (I'm happy at about 50 (110lbs) which was awesome. I'm trying to psych myself up to get back on the scales right now because in the last three months I've gone down a full cup size and my jeans (skinny jeans I had to suck my stomach in to get done up, and were tight on my thighs) are baggy in the legs and sag horribly in the butt, they barely stay up except that the waist is so tiny.

MaiCarInMtl
May 11th, 2011, 09:27 AM
Candlesandfish - I am so sorry to hear about your health problems an hope things will get better with time - I cannot even begin to imagine what you are going through.

I was just reading about pillows in the tub. I know that (years ago), some stores used to sell air pillows with suction cups for those who wanted a bit of padding while leaning back into the tub (it's great for reclining and reading). So perhaps this would be an alternative to regular pillows or towels in the bottom of your tub when you want padding for your knees? You can inflate them or deflate them to get the padding you want/need. Perhaps look for a sturdier one (or thicker) just to make sure it doesn't pop on you in the middle of a shower (the pressure from leaning against it is different from kneeling on it).

I hope you find a few solutions that make this easier for you.

candlesandfish
May 17th, 2011, 08:39 AM
Bumping this thread to comment on what's working (and not).

My hair is matting up horribly at the top. I think this is mostly because I am spending my days leaning back on three pillows against my bedhead, and the top one (most in contact with my hair) is flannelette, and my guess is that my hair wouldn't like it. I can probably swap it for a normal pillowcase at minimum.

My hair feels really dry. I'm not sure if that's the fact that I'm inside all day with the heating on though, so I might try a treatment from lush and see how I go.

I've finally figured out the practical side of washing my hair at least thanks to all of you - I found the attachment for the spigot of my bath - it's a rubber cup thing that goes over, with a long hose and something like a lightweight, slightly smaller shower head made of plastic with finer holes than a normal shower head. I sat in the bath and washed my hair with that and it was a lot less exhausting than last time around. I can also get to the underside, yay!

My hair doesn't seem to like anything I was using on it more than what I used for two years or so which is a pity, because lush is discontinuing my old conditioner, but oh well. Hopefully they'll put it in the "retro" section and I can still get it that way.

I'm pretty much stuck in bed at the moment and it isn't fun, but it's looking up thanks to some new supplements I'm on and I'm seeing the doctor again tomorrow so we'll see. Glad to find out that I can manage my hair even with my health though, thanks all of you so much :)

candlesandfish
May 17th, 2011, 08:42 AM
MaiCari i just noticed your post, sorry!

Those pillows are cool, I think I have one of those somewhere. It's a nice idea, but it would require me concentrating and tensing muscles to keep my balance, which isn't really any better than standing - tensed muscles and fibromyalgia are not a good combination. It's a good idea though, a gel mat or something like that would work, but I'm not sure if they exist (wouldn't wobble). As it is, I can sit cross legged-ish in the bath, and that's comfortable, so I manage.

frizzinator
May 17th, 2011, 08:53 AM
Your hair will be much easier to manage if:

you wear an updo all the time, and put it on top of the head when using a pillow;

and detangle with a wide tooth comb everyday and remake the updo.

Firefox7275
May 17th, 2011, 09:00 AM
Well, I did ask for help, didn't I? And I've been there done that enough as a 19 year old (when I was first diagnosed) to know that listening to advice is a good thing (with the exception of one doctor who had me on a medication regime that was physically impossible to keep up with and didn't help, so I stopped taking any of it, which made it worse...) so I do.

Opera's a thought, but I like firefox for too much to give it up I think :(


You did ask, but not everyone is good at taking advice and it's especially tough when you are suffering physically or mentally ... It's great to hear that you have a solution for one issue! I agree Firefox rocks, so I use Opera for some tasks and Firefox for others. Anyway, hope you feel better soon, keep trying to eat high calorie nutrient dense foods such as dried fruit and nuts. :grouphug:

embee
May 17th, 2011, 09:26 AM
Your hair will be much easier to manage if:

you wear an updo all the time, and put it on top of the head when using a pillow;

and detangle with a wide tooth comb everyday and remake the updo.

This! :)
Only I like to remake the updo morning and night. Top of the head when resting, back of the head when up and doing things.

Also, there are foam pads especially for kneeling. They're sold for gardeners. I do not mean the little knee pads one straps on, I mean a piece of stiff foam the right size for kneeling on. You might want to investigate such a thing. Then you have something softer under your knees if you need to kneel, and it won't ruin like a pillow would, nor will it upset anyone with "towels on the floor". ;) I use my kneeling pad at the side of my bathtub when I bathe my pet snakes and wash out their cage furniture.

Now this might not work for you at all, but I have not washed my hair since October of 2010. There is a thread on LHC for No Water / Sebum Only. I do comb and brush and work with my hair, but I keep my hair in an updo when I'm not working with it. The tangles are minimal. When I shower I keep my hair in a bun on the top of my head and cover with a shower cap so the length will not get wet. Sometimes it is necessary for me to give my scalp a rinse, and that's when I do it, but the length stays dry.

I am sorry you hurt so bad. I've only had one experience like that and it was a month of bad reaction to medication which gave me an unremitting arthritis-like flare-up which went away within 48 hours of quitting the meds. And never ever came back! :D (I don't even know what ME is but if it puts a young woman to bed for days and days, it must be horrid. )

candlesandfish
May 17th, 2011, 10:04 AM
Updos are great, but they require some form of hairstick or something to secure them, which isn't practical with pillows. They're also not at all comfortable to lean back on when you spend most of your time half sitting half lying in bed (like I am now - two pillows parallel to the bedhead, one under my shoulders) which doesn't help. The other problem with them is that they require me actually doing them every day and I have limited energy, so I find it easier to only do my hair like that if I'm going to go out somewhere and look presentable. I live in my pyjamas and a braid because I'm in bed most of the time.

Here's a picture of me propped up somewhat like I'm describing (I'm more well here, not a lot but a bit, and it's a few years old - please forgive the cat and laptop, the photo was actually about how silly my cat was not to care about the laptop at all and just sleep)

http://inlinethumb60.webshots.com/48059/2896158060100712226S500x500Q85.jpg (http://good-times.webshots.com/photo/2896158060100712226lBWnbQ)

When I'm sick like this I lie further down, with my head resting on the top section of the upright pillow. It's comfortable and it lets me use the internet without my back or neck aching and doesn't tire me out.

As for what ME is, it's also known as Chronic Fatigue Syndrome (you'll often see the abbreviation ME/CFS). Here's wiki about it http://en.wikipedia.org/wiki/Chronic_fatigue_syndrome

Intransigentia
May 17th, 2011, 10:26 AM
OMG your cat is precious!

Something else you could try for your hair that I haven't seen mentioned: there's a member here who has converted one leg of a pair of satin pj bottoms into a sleep cap. She put an elastic at the top of the thigh, to keep it in place on her head, and then the braid hangs down the leg (and out the bottom of the ankle now too I think.) I'm guessing cutting up the pj's and sewing in an elastic would be a bit too much effort for right now, but maybe if you got a small size, you could just wear it on your head as is? I know it would look silly, but it might just work.

candlesandfish
May 17th, 2011, 10:47 AM
Thanks for the compliment on my cat - she's adorable and she knows it, her name is Koukla (which means 'doll' in Greek but also 'cutie' or 'sweetheart' (it's what your grandma would call you as she pinches your cheek)).

The satin idea might just work. Getting satin pjs at the moment would be tricky though - we're going into winter here, it's FREEZING, and it's flannelette or basic cotton or VERY EXPENSIVE silk or satin. As much as I love Peter Alexander PJs, I'm not cutting them up for my hair :)

Just sewing a piece of satin into a tube and sticking elastic on the top is a good thought though, it might help with the mats that seem to form at the top of my braid and above my ears. It'd look silly, but might help... that, or do what someone (several someones) suggested and get silk pillowcases. Expensive, but this is kind of crazy.

Putting a hair treatment through my hair will probably help a bit too, I should do that sometime soon.

Anje
May 17th, 2011, 11:17 AM
I think a satin sleep bonnet would work as well as anything for you. Keeps hair from tangling, rubbing on the pillow, and you still get to have nice comfortable pillowcases. (That's why I use one. I hate how satin pillowcases feel!) I normally just keep my hair loose inside, but I'm known to braid it, too. This is what I'm using at the moment, bought locally, (http://www.amazon.com/Stay-Satin-Nites-Bonnet-Sleep/dp/B003I5SC72) but I've heard that this style (http://www.amazon.com/Stay-On-Satin-Pocket-Bonnet/dp/B003I5ZMDY/ref=pd_sim_bt_10) might be better, as it has a large area for hair to hang down into.

pepperedmoth
May 17th, 2011, 12:26 PM
Your cat is precious. :)

I'm so glad the bath attachment idea worked out!

A final thought about the tangles problem is to try a snood- it might look a little more elegant for day wear than a sleep cap. This company (http://www.garlandsofgrace.com/) is for Christian cover-ers but they are well made (I don't cover but I bought a lacy headband from them for my wedding because I thought it was so pretty). This snood (http://www.garlandsofgrace.com/products-page/one-of-a-kind/stretch-meg-in-heather/) seems quite nice- so does this one (http://www.garlandsofgrace.com/products-page/one-of-a-kind/megs-ruched-snood/) or this one (http://www.garlandsofgrace.com/products-page/classic-coverings/megs-snood/).

You could tuck your hair into the snood, secure with a few pins or a headband, and be good to go (or lay). Much more comfortable to lean back on, and fewer tangles.

candlesandfish
May 17th, 2011, 10:16 PM
That's a nice thought, much prettier than a bonnet during the day (i feel gross enough as it is). I like the ruched one. I would think my hair would fit - it's fine, so it compacts quite nicely into a bun when up and I'd guess it'd squish into a snood too.

I might have to look into shipping prices and get one :) Thanks!

Edit: shipping to Australia is only $2 more than the USA ($6 instead of $4!) - awesome, yay for not getting gouged on shipping. I'm getting one of the meg snoods with crocheted lace on the edge - it's pretty and I can wear it out, too :)

frizzinator
May 18th, 2011, 04:09 AM
Updos are great, but they require some form of hairstick or something to secure them, which isn't practical with pillows. They're also not at all comfortable to lean back on when you spend most of your time half sitting half lying in bed (like I am now - two pillows parallel to the bedhead, one under my shoulders) which doesn't help. The other problem with them is that they require me actually doing them every day and I have limited energy......


Use pins, such as bobby pins, amish pins, Bunheads pins or bent double pointed knitting needles to secure the bun. Pins are inexpensive, and you might already have some pins.

You will eliminate your struggle with tangles if you do all of these: daily detangling and putting a bun on top of your head, using a silk pillowcase and also covering your hair with silk.

Making the daily bun requires less energy than struggling with tangles. The daily detangling I'm talking about requires no energy compared to the detangling you are struggling with now.

When you put the bun on top of your head (not on the back of your head), it is not touching the pillow. The bun can be made just above your forehead.

If the bun comes loose or falls out, you need to comb your hair and then make the bun again. Remaking the bun without detangling will create tangles.

candlesandfish
May 18th, 2011, 07:05 AM
Thanks for the suggestions, and I mean this in the nicest possible way, but...

I understand that what you're saying sounds rational, but I'm not sure you understand how little energy I'm talking about. I wore one braid for a week because even taking it out and rebraiding it was too much effort, much less detangling. Having my hands up is exhausting, but it's easier (weirdly enough) to do one big detangle periodically rather than doing it constantly. My hair was in a pencil bun this morning for the doctor because I'm feeling a bit better today, and could actually brush it myself without it causing serious issues, but that was the first time I could do that in a month. Until last night, pretty much if my hair was getting brushed it was someone else doing it, usually my boyfriend who would braid it when I was done.

The kind of 'being sick' i'm talking about is not even having the energy to sit up in bed and half lying half being propped up on pillows because just sleeping all day gets really boring after the first week. It's only getting out of bed for an hour total a day because I absolutely have to get up in order to eat, not because I want to.

Wrapping my hair in silk is the most practical option, and I'll probably do it. But buns really aren't...I can't sleep with them in (I shift position a lot since fibromyalgia gives me a lot of pain) and that would mean redoing my hair at least twice a day, which is more often than I could budget energy for - I have beyond tailbone length hair and when I'm this exhausted, that's heavy and hard work.

Don't get me wrong, I love buns, my hair is in a pencil bun most of the time when I'm well, but they don't really work for bed unless i was to have someone else do a braided bun for me and redo it every day, which isn't an option.

On the upside, I am feeling a bit better today, so have clean (from last night), brushed hair in a ponytail with forget-me-not blue ribbon tied in it. And I've been out of bed for the whole day :) Lots of sitting down, but not lying in my pyjamas, so I'm happy.

DoubleCrowned
May 18th, 2011, 09:40 PM
I have an idea for cushioning the bathtub: the rubbery, cushiony, gripper stuff that is sold by the yard for holding fine area rugs in place. Perhaps two layers would provide cushioning. It is light weight, would stay in place, and could be any size you want, so there would be no balancing act involved.