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Just a side note--I'm not the only one!!


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Just a side note reading some other posts...

I don't wish this condition on anyone but after reading some of these posts I realize I'm not the only one struggling with just basic "daily" activities.

For a few months now I've gotten to the point where I just don't have the energy or stamina to take a shower every day. I even have a shower chair which helps a lot but I still can't manage every day. I live alone so most people never know or realize this about me but I've still felt embarrassed by it. It's not like I'm gross or dirty....because I lay around much and don't do anything.

I guess I get discouraged sometimes over the "little" things like this and I was kinda feeling "less than" about myself but you guys made me realize I'm not the only one struggling with this kind of issue.

Sorry others have to go through this but glad I'm not alone!

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pooh..

its funny that you have brought up showering.... I for one... who used to take multiple showers a day.. have gotten to the point to where I am lucky if I get a shower every couple of days!!

I too have a shower seat.. but my lord I seem to get so sick in the shower...(nausea.. vomitting :ph34r: and yes.syncope) ..It tires me out so quickly.. especially the having to raise your arms to wash your hair.. and heaven forbid that you want to shave the furr off your legs!!.. zapps the energy right out of me!!!

I dont have the energy to do simple tasks more and more lately!!

But I wanted to comment on your shower thing... So NO you are not alone.. pooh!

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From my corner:

1 bath per week + 1 shower every 2 weeks + 0 exercise = no problem!!! :blink:

Yes, it's frustrating, but that's the way it is sometimes. I had fuzzy bear legs, too :ph34r: , but there was no way I could keep up, so I didn't bother.

I'm much better now:

1 shower a week + a smidge of exercise = very happy :D:)

You're not alone, Poohbear! Keep your chin up! You'll make it through fine!

With love,

Angela

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Had to chime in on this one...

I used to love the feeling of a shower everyday and having smooth legs. Now I'm lucky if i'm able to shower after exercise at rehab. I always have to wear long pants there to cover up my hairy legs too. One time i felt about to pass out, but i spotted my pants were hiked up, so i was struggling to stay conscious and cover up my hairy ankles at the same time...it was quite a sight! :ph34r:

Also, one thing i really miss is blow drying my hair. The standing and the heat make it pretty much impossible. So my hair air dries in half wave chunks. Guess it doesn't matter too much since i stay at home and lie in bed anyway. But i totally relate.

Kristen

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Great topic!

I manage to shower every day, sometimes every other day. I don't like to do it when I am home alone as I tend to get very dizzy/palpitations...you know how it goes. I've learned to tolerate colder than normal showers and can shower in under 5 minutes. I think I'm working on some sort of record. Shaving is done with me sitting on the side of the bathtub, even something about that doesn't make me feel totally well though. Blow drying my hair can be difficult too. I can tolerate for a brief amount of time if I am feeling okay. I used to take super long, hot and steamy showers, shave everyday, etc. - that would just do me in completely if I tried that now.

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To shave, I often sit in the bottom of the dry tub, and use a little warm water running from the tap along with Kiss My Face shave lotion. Works for me, as I'm seated, and mostly not in the water.

I also do something I call a "cat bath"--I also sit in the tub, fill a 1 qt plastic container with nice warm water, pour it over me, do the shampoo and soap, and then use a few containers of water to rinse. This way, I'm not in the warm water very long, but it gets the job done so I can go to work. Takes less time than a shower (I'm usually done in under 2 minutes), and seems to leave me feeling less wiped out.

Nina

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I sit on a stool to shave about once a month. I am not really hairy, but it does get long.. I have OCD too, but for other weird things. I now shower about every other day. I really hate it but it takes too much out of me. I have curly hair, so it's okay if I just let it go. Then every day I don't shower I at least try to do the "possibles" You know down as far as possible, up as far as possible, then you have the possibles. An old nursing thing. I try to shower when someones home in case I do a head banger thing....morgan

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Guest Finrussak

I cant help but read these posts and say OMG thats ME...sharing and knowing all of us is going thru this is amazingly therapeutic!!! I felt awful for the past 2 years. I had gotten down to a scrawny 84 lbs and couldnt even bear sitting in tub...too weak...those body cloths are not really good...leaves a filmy slime that attracts more than it takes off UGH. I hated needing help and avoided the aides ( strangers and Im a bit shy I guess and ok proud too)

So I finally let m,y "almost ex" help...now THAT was even worse...every 7-9 days..humilitaing...he acted like I was a dog needing grooming...aiming the shower spray from acrooss the room ( now he says looking back,he didnt want to risk anything 'sensual' but I suspect its his general attitude...hence the "almost ex" title and him living in his own condo 3 mi from me as he " doesnt handle illness well"...ugh) but I had to be somewhat hygienic.

Then I gained about 8 lbs, a little stronger and "graduated" to sink baths. I sat on the toilet which is near my sink and use a washcloth and liquid soap and I guess its like a sponge bath. Then my last hospital stay this past spring they had this stuff thats non-rinsing body wash...I still rinse but it is very good.

When finally this past june ( after 18 long months) I was finally able to shower standing UP and by myself I nearyl cried...funny how the small things are so darn satisfying...but I still needed help with my hair...by then I had lopped it off to my shoulders myself ( sitting/leaning at salon was out) but soaping, rinsing and especially drying was a no-no..for that the "almost ex" still helped.

then came the day only 3 weeks ago...I washed my own hair!!! and dried it ( ok so I had to sit, leaning on my elbows with the dryer propped on the counter but I DID IT)had to lie down for 45 min after...but I DID IT..

youd have thought I invented "the cure" for the worst dieases!!!I was so pleased.

BUT I still cant manage this death defying feat more than 1-2 times a week and still do my "sink scrubs" every a.m....and Im still trying to get those legs with a machete more than once a month...its harder for me even on the toilet becasue when I lean over or bend in half I get skips then tachy/brady stuff...but lately I can get my legs way up onto the sink ( I guess the joint hyopermobility IS good for something...and at 48 this is pretty good) but hey small steps right/ ( Ive even succumbed to shaving just the "obvious" ares...like from the calves down if expecting an ekg, knees down if expecting hospital gown etc...pride??? or nuttiness??)

and this from the woman whose water broke and in full labor ( all three times) insisted on shaving my legs and doing my hair before leaving to the hospital...which was crazy for numbers 2 and 3 given that number 1 was delivered in less than 2 hrs!!!!( fyi number 2 and 3 were less than an hour after arriving at hospital--but their Mom had smooth legs and clean hair :)

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I used to do what Nina does ---sort of. when I was hit really hard in the beginning of my POTS---I used to put just enough water in the bottom of the tub to get the job done. I would do this at night, and the next morning I would have my husband help me wash my hair before he went to work.

Now I take showers, but sadly I am starting to have those days again where it's real tough to get through. By the time i'm done with the whole routine----shower, getting dressed, do my hair-----uggg, i'm wiped out.

My husband and I just had a new bath tub and shower surround installed last week. It's a really nice deep tub for soaking. Well, I thought I would try it. It didn't go real bad while in the tub, but I only stayed in for about 5-10 minutes. When I got out----I was more wiped out then I get from my whole shower routine. I thought I would soak my hips because they get so sore---NOT.

One day I did this when my BP was 84/67----what was I thinking?

I have to find a way to shower/bathe everyday-----too OCD in the clean department i'm afraid. Bless any of you who aren't obsessed like I am.

It's really not necessary to bathe everyday if your not active. A little sponge bath here and there is fine.------------- :)

Julie :0)

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I have to shower just about everyday because otherwise I have terrible pain and stiffness. The heat helps my muscles too much to skip it. I have trouble with the heat, but I leave the door open, turn on the fan in the bathroom and put the ac in the room outside to a chilly 68 degrees. I sit in the shower and out of it. I wash with my feet up and do my hair with my face leaning down so my arms to not go up very high. I get dizzy, spaced out and queasy, but I also have pain control. I also lower my bp with showers and help my migraines because I open the blood vessels, lower bp and increase blood flow in the brain (I get very high bp with my migraines and lowering it can lower pain as well). When I do not shower, I am less spacey but unable to do much due to pain. Sometimes I bathe very quickly about half an hour before exercising to loosen up muscles and then I sit on the floor and stretch them. I can never ever shower after exercise or when I am really sweaty because I am just too ill. I rehydrate then clean off and that feels oh so good. I also have dry skin and hair and have to use conditioners regularly or my hair becomes a matted, gian, frizzy, straw nest.

Leah

PS. I used to think all people had chest pain in the shower and that many people would take long showers not because of their routine but because they would sometimes wake up on the floor of the tub after being out for five minutes (I am serious, I had it so much of my life that I thought all high school students experienced this).

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Funny story, I had been ill for about 5 years and had gotten the shower chair quick shower down pretty good about 1 a week. Anyway had horrible headache and had gone to doctor to get shot of demerol and phenergan and when we got home we have the bright idea that I might sleep better if I was a little clean and hubby was going to help so no chair. Fainted dead away and had to call EMTs. Not funny but when we went to see doctor we told him and he said well it is bad form for your patients to faint dead away after you have helped them don't do that again! :lol::blink::)

I am lucky still after almost 10 years of getting a shower once a week. Jim sweet hubby that he is calls me ape or fuzzy bear (though I don't have THAT much hair on my legs!). Just this past year we installed a bar outside the shower door and now I can get out if I am not to bad.He starts the water and helps me in. I always make sure he is here but it is nice now to get out of the shower myself. I do have the greatest thing it is the Turbie towel. I just wrap my hair up in that and it wicks away most of the wetness so Jim does not have to rub my hair with the towel. I love that Turbie towel! My hair well I never blew it dry before I got sick no patience so now up in a pony tail and I am well"beautiful" :-)

Anyway you are not alone and we stinkies can stick together!!!!

Stacey :-)

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i seem to be ok in bath's, my bath has a step up to it and i use that to kind of roll in and out of the bath, it's hillarious to watch apparently, have a not helpful fiance who laughed at me the other day. showers however are evil and i don't go in them anymore, especially not if my hair needs washing. i passed out in the shower last month and landed on my wrist and sprained it but as i take two phones with me everywhere (some people get annoyed that i phone them from the bathroom) i phoned my mum and she came and got me and dressed me - am i the only person who does not lock the door? i'm terrified of getting stuck in the bathroom and drowning!

as for hair washing - i predict the greasy wet look will be in this season! joking, i am also quite ocd about washing and i was my long hair every other day but i can't dry it myself - even if i'm sitting down it causes me major tachycardia, so i wear my hair in two plaits like heidi, thank goodness the boho look is in!! :)

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LOL..

I am glad to see that I am not the only one who carries a phone to the bathroom!! I normally keep the cordless and or cell phone (or both) in the bathroom with me..

I have gotten to were I do not take showers during the day anymore unless I absolutely have to..In april I had a very bad syncope spell while tkaing a shower and fell backwards and smacked my hip but good.. OUCHIES!!

SO I am resigned to the fact that i take shower every couple of days in the middle of the night...

and heaven forbid I have to us a blow dryer... i cant stand those heated contraptions!!! thay make me sick and I do mean LIterally!!!

:)

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A few more suggestions:

An electric razor so you can shave those legs even when you can't shower.

A vanity stool and a hair dryer stand with a fan nearby. Look Ma, no hands!

Premoistened bathing cloths (most don't need rinsing off).

"Dry wash" spray for dread locks helps keep hair clean between washings.

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I can relate to you all regarding the showering. I used to take 2 a day in the summer before I got sick, always did my hair, my makeup etc. Now although I try there are some days i feel too sick to waste an ounce of the energy i do have on the shower. Many times I opt for a bath instead. I don't have a shower chair but I definately would like to get one. As for the hair and the makeup...if i am going somewhere real important and feel up to it I bother. Most days now its no makeup and a ponytail. After my 3 surgeries this year this was even more infrequent, and then i just wore a baseball hat or a scarf on my head. I have a whole collection of hats and pretty scarfs for my head when i dont feel like doing my hair. This works out great in the winter, when I am freezing from low tolerance to cold and the midodrine chills. Anyways, I sooo can relate!

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Hi All! I sit down in the shower with my legs crossed..no shower chair..I feel more secure when I'm all the way on the ground. I also use an electric razor when I'm not up for shaving in the shower..it doesn't get the legs smooth..but you can't SEE the hair..so it works B) ! I usually let my hair air dry for a little while then I sit on my bed to dry it..I like to use the cold setting although it doesn't work as fast. I haven't actually "fixed" my hair in a couple of years..guess I'm going for the "natural" look too. It's funny..before POTS I had blond hair thanks to my hairdresser...now it's brown again..it was interesting to see my real hair color again..I'd forgotten what it was!..Unfortunatly I'm finding white hair now too..that was a big surprise B)

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Sorry you're having so much trouble, pooh!!!!

I'm so glad that you've got your shower chair and stuff, though, that must be a lifesaver... I usually just sit down on the shower floor when i get really bad.. yeah, just imagine sitting down on the floor of a dorm shower.... who knows what's been done in there!!!

Oh and I don't shave- LOL well, OK I do if I'm wearing a skirt or something, but I always wear pants... Haha... I have reasons for not wanting a boyfriend now- see, it's too hard to shave! :)

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Hey,

Here is one web page that talks about that Turbie towel. NOT reccomending this site jsut the one that had best showing of Turbie Towel. http://www.cachebeauty.com/turbie.htm it helps me so much and thought you guys would like it too!

Stacey :-)

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pooh et al -

i'm guessing you already know this (since i think one of my posts may have helped spur on the topic B) ) but this is definitely a "me too" for me.

i've had a shower chair for years. before getting it or when i'm not at home i sit on the floor of the shower, but the lessened water pressure from being farther away annoys me b/c it means that it takes me longer to get out the shampoo, etc. & longer in the shower means it takes more out of me...

i got a handheld shower-head thing-a-ma-jig (not sure the "real" name) after my neck surgery and never realized that it would help in general but it has in more ways than one. i think it was only about $20 and i brought it with me from my old apartment to my new...

i also have my showers down to super-quick & turn the water off on the rare occasions that i shave. i'm sad that my hair isn't quite as transparantly blonde as it was several years ago :(

generally i shower every 2-3 days b/c it just takes so much energy/time...not time in the shower but time "recooping" after...i too was a used to shower several times a day after workouts, etc. but if i can't do it i can't do it. and if it's between being able to go to class or take a shower, i'll throw on some deodorant & head to class.

i'm always torn on water temps b/c i'm usually cold & want the hot temps but pay dearly if i keep it too hot soon after.

since i live alone i shower alone (or rather with no one else in the house!) but this does probably mean that there are days that i don't when i might if someone were around (i.e. yesterday...my parents were visiting so i showered but otherwise probably wouldn't have done so...)

in baltimore i had friends i could call if i wasn't doing so hot before & after so that if something didn't go well someone would know right away. i don't have anyone here in cleveland though (yet) that is lucky enough to get shower duty....

for me the toughest part of forgoing showers is my hair, or rather my scalp. i have pretty icky skin issues that get worse when i don't use my Rx shampoo at least every other day. after my gallbladder surgery fiasco & other hospital stays (and thus no showers for too long) it took my scalp almost a month to recover...

bottom line though...pooh, you're definitely not the only one!

B) melissa

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Ha, Ha, Ha,

I laughed so hard when I saw this. I, of course, thought that I was the only one in the world with the "shower secret." When I read your postings I felt like I was sitting on a porch with everyone and we were laughing together, until our sides split. Somebody rolls up a pant leg, and pretty soon another round of giggles start.

What stories born out of such pitiful bodies. Aren't we quite a bunch? I'm glad that we have each other and that we can improvise in our need. -Deb

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This topic is great! I can completely relate to it! I've learned to take extremely short showers,like five mins. Otherwise I'll blackout in the shower. if i need to shave i usually take a bath, cause i can't stand up long enough. I usually sit to put my make up on and fix my hair. I normally don't have the energy to stand to do anything anymore.

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