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Being Bed Ridden


jkapache
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I have a ? for all those that are/ or have been bed riddden! My mom continues to ask what is the 'worst case scenario' for my POTS, aside from the fact that I REALLY dont know, I tell her that alot of times people are bed ridden, and to me, thats bad! She then went on to ask what BR people do all day! And if they continue to see other DRs, and try new meds. WEll to be honest, again, I dont know. So can any of you fill me in a bit about being bed ridden, so I can better educate her! Thanks! And to all of you that have or are BR, I'm very sorry, and you are in my prayers! ~Peace~

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Guest danielvasel

good topic....

im also afraid that things will get worse... in fact, things are already getting worse....

but hey, there?s also a chance that we?ll recover, even completely:)

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Well when I was bed ridden I was on the coach all the time. I use the oxygen about 80-90% of the time. I just slept and wacthed tv. I was unable to read, as I vision was blured. If I was really lucky I could get up to go to the bathroom on my own. I son even though is four, was agrea help he would bring me food, or my drink, and would sit and talk to me. You learn to work with what you have. I am now up and getting around I still have bad days, but not lije when I was really down. I have been home know for 8 months, and not been able to work. I am hoping with the med changes which have helped and getting better, (even though I am low right now, I think I just over did it) I will be able to go back to work in the next 90-120 days!

Not sure if this helps..... Just got back from doctor and got a pain shot so I am alittle out of it! Talk to you later! :)

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What do we do all day... well what I always say to people who don't understand being bed ridden, is to ask them to think of a time when they had a really bad stomach flu and to think of how they felt on those days, and then I ask them that while they felt that way, what did they do? Usually the answer they give me is they felt too sick to do anything--- and I say "exactly"! So if they'd picture themselve feeling like they have a stomach flu every day, what would they do all day!!!!! I don't "exactly" feel like I have to stomach flu, but feeling severely sick with multiple symptoms has the same affect, and all a person can do is just rest. We use up all our energy just being awake for goodness sake :)

- Tammy

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When I was bedridden it was b/c I was so very weak and exhausted. Perhaps some of us are bedridden more b/c of fainting problems, but most of us are bedridden due to extreme and continuous weakness and exhaustion. Therefore, as Tammy said, when you are bedridden with POTS it is like being bedridden with anything that makes you very sick.

Standing for more than a few minutes could wipe me out for hours. I was a new mother at the time, so what did I do all day...I napped and cuddled with my infant, breastfed, talked and read to her, and felt very, very frustrated and scared. My vision would blur on sitting or standing and it was hard to concentrate. I did do some reading, and even less TV watching (TV was too stimulating usually.) There were days I even had to eat in bed--I was really too weak to walk to another room, except to the bathroom. Bathing would completely wipe me out.

I got better, then worse again, before I was diagnosed. I put what precious energy I had into seeking answers. Going to the doctor was exhausting--my husband had to help support me at times and I had to use a wheelchair when one was available.

POTS patients with even severe symptoms are encouraged to stay out of the reclining position as much as possible, as hard as that can be to do--I did not understand what I had, so did not understand what things I could do to improve, during a good deal of my bedridden weeks.

Hope this helps.

Katherine

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I've also been told that it's better not to be on true bedrest if at all possible. Sitting in a recliner is better than lying down. Since I find it easier to transfer from a recliner to wheelchair than from laying in bed, sitting makes getting to the bathroom easier. Although there have been days where just sitting up has been more exertion than I can tolerate.

With any reduced activity, doing very simple leg exercises can help pass the time and help preserve strength. Just things like, point and flex toes. Sometimes you can negotiate a "peace-treaty" with your doctors about leg exercises and shots to prevent blood clotting too. (I can't stand the shots in the belly when I'm stuck in bed.)

On my bad days (weeks...) I've watched TV, listened to books-on-tape, and napped a lot. At a bit better, I talked to friends on the phone and played on the internet too. My synagogue will send someone to keep me company during the day if I get really lonely. I've found that helps a lot.

My insurance company will pay for nurses and physical therapists to visit me at home when I'm very ill. Obviously, I'm lucky in this regard, but it really helps! They can make sure my doctor is kept in the loop and that I'm not getting worse etc.

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When I was bedridden for the first 6 months of my illness and it's like other people have said, I spent all day feeling too sick to think straight and trying to recover from the few times I did have to get up to go to the bathroom.

As for the progression of POTS, POTS itself is not progressive, but if you have an underlying disease that is progressive, like mitochondrial disease, or an autoimmune condition that's causing autonomic neuropathy, then sometimes symptoms will progress over time.

Most people with POTS do not progress however, and improve with proper lifestyle changes and medications. For example, this time last year, I was bedridden and even sitting up for a few minutes exhausted me. Today I went to a doctors appointment, came home and folded laundry, then went to BestBuy (all in my wheelchair of course, but I was still able to do it and not feel horrible afterwards).

There are many here on the forum who were very sick and are doing even better than me.

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the worst time for me was before i was diagnosed and NCS was kickin' my butt. :angry::( more often than not, standing='d fainting, but i could do a little activity....stumble/walk to bathroom, couch, or kitchen (i called them my "Wee Marathons for the Questionably Afflicted" since we didn't know what the bleep was going on with me! :blink::angry::(:huh: ) lemme tell ya, those little excursions would exhaust me for hours!! :angry:

once dx'd w/ NCS, i got better controlled, within a month i was up & running (ok not actually running, but i was near-normal for me)!! amazing!! :D had a couple good years, then came POTS and it was the same show again, only this time I knew a wee bit more about dysautonomia, not that that gave me any control over what was happening to my body, i was just better informed. it has taken years to get the meds/lifestyle/liquids/supplement combo to a workable level, & it's been a long, hard, strange trip. since the POTS dx, i have had down spells/"exacerbations" where i am for all intents and purposes bedridden. sometimes it's a week ordeal, sometimes longer, sometimes much longer, and the intensity varies.

i agree with what everyone has posted here about "what is it like to be bedridden." you just do your thing (i don't have TV but i think i'm developing a hearty internet addiction ;) lol), do as much as you can (marnian is totally right about the activity/exercises), KEEP YOUR SENSE OF HUMOR>>>YOU'RE GOING TO NEED IT!! and always hope it's going to get better. :) you always have to have hope and humor, i believe. :) i have been fortunate to only have had a half dozen or so "exacerbations" of varying degrees each year. it does seem almost every year a different system in my body craps out on me. <_< This year's contest winner was the reproductive system! Hooray! (not!):P nonetheless, i am grateful for every good day i have and every bad one i can learn from.

i think the most important and biggest difference with being down with POTS or any other form of dyautonomia is that when you are ill, people don't understand with what. for a long time (and even sometimes now, though most of my true friends/close family know the score) people actually thought i was faking or making it up. i think to myself, who would make up an illness like this???? and why????? i mean, i'm imaginative, but dysautonomia throws me a new curve all the time!!! and it s@#$s! oh, YEAH, sure, SIGN ME UP for that one!!! :rolleyes:

i also think it can become exceedingly frustrating to be down with dysautonomia and have to be a teacher about it. it's become clear to me that although it may be frustating as all heckfire to educate doctors, nurses, friends and family (especially when sick) that i really do owe it to myself and others with this type illness to do the best i can, with accurate info and to try to be as rational about it as possible. (this does not always happen, sometimes i want to get violent with idiotic people and sometimes i'm just too dang tired, sometimes i just cry and cry cuz i can't take it, but it is a continuing goal for me, nonetheless!)

the worst has been when i'm down (again) and someone enlightened person asks, "What, again? What's wrong with you that you're sick all the time?" That kind of attitude almost never makes me feel better. It makes me feel like I'm a failure of some kind, an alien. Sigh. Breathe deeply. Run to the shelter of an understanding forum. Seek solace among those who love and support you and always, always remember:

You Are NOT Alone!! ;) (((((((hugs to all us!))))))))

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Guest dionna

okay... i was still in the marine corps in my original company... we have what is called SIQ... sick in quarters. if you are put on SIQ--- technically you aren't allowed to leave your room. i was only put on SIQ for a few days... my company knew that i was really sick and that i wasn't just faking anything. i would either stay in my rack and sleep, we didn't have cable or internet, or i would just sleep. when i was at my worst i would actually sleep atleast 20 hours a day... so i slept. my room mate would wake me up to use the restroom (in which she would literally carry me as i passed out in her arms when i was brought up), to eat, to drink something, and to take my meds. but on the days i wasn't THAT bad, i would sit by the window and just watch the traffic, which was rare, or i would go talk to the duty. sometimes i would go in the company office and just talk or i would sleep on the company first sergeants couch. i also had a lot of vistiors. people came by all the time to see me so that wasn't all that bad. but it was also after they got off work maybe 5 or 6 at night and then shortly after that everyone wanted to go out or some would go to bed early. no one stayed very long. which was good too when i had a headache. it wasn't bad though. i had a lot to think about anyway.

so i would sleep, stare at the ceiling and walls, talk to my visitors, think to myself about life, and stare out the window. i did a lot of wishing to. a few have come true! :angry: i haven't gotten rid of POTS yet but at that time i didn't even know what was wrong with me. i got the diagnose i wished for but not the "cure" there is none. but i did learn to accept it when i was bedridden. like i said i had a lot to think about and the only thing i had left that i absolutley wanted to experience that i hadn't yet... was to experience falling in love and having a family <_< . i know laugh it up. if you truly knew me you would! i'm not really that type. or i wasn't. i found my man now though and i don't mind thinking like that. i do love him.

i did go to the basic aid station to get IVs but that was about all.

oh and i was on bed rest because everytime i stood up i would faint. literally everytime.

at one point the company made it a rule that no male was to be around just me. a female had to be around if a male was present. guys started rumors and talking about what they would do and it was a big mess. i also had that to think about.

i wish i had the tv and video games and computer and puzzles and books and stuff like that but that just didn't happen. next time it will be though. hopefully the next time i am bedridden it will just be because i am pregnant... in a couple of years. then i better be pampered! "honey i need...., honey i want.... GIVE THAT TO ME!!!!" whatever the case may be. :angry::rolleyes:

i hope that worked for you and her.

dionna :angry:

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You wouldn't believe what I do in bed or I like to call it from bed. Read avidly, watch tv and films but prefer to read. Do craft things, internet, photo editing, give myself pampering sessions (facials etc), help run a business, home ed my child. The list is endless.

I do need rests though of course but I don't lay down most of the time as it makes me much worse. I sit up propped up. I'll only lay down for about half an hour maybe once or twice a day. I also try and potter around when I can, I always seem to be up and down for things, getting this and that, going to the loo.

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i am bedridden and it is terrible, i use my lap top computer alot, read and watch t.v. when i can, and like to cut out pictures and good quotes from magazines and make collages, and color with colored pencils, but i am most of the time too foggy and too exhausted to do much of anything, and also too hyper to concentrate on anything for very long,

radha

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It's awful, being bedridden, you poor pet. But as people here are always saying, IF you can get up and try walking about a bit, then do. If that's too tricky, try getting some little cycling pedals put at the side of your bed, I had that in hospital last year, and it really helped me stop my leg muscles from wasting.

I'm just out of hospital after 7 weeks, most of which was spent in bed rest. But the Drs made sure I started physio once I was strong enough- exercises with walking bars at first so I could keep my balance, and then a full blown cardiac rehab fitness class. It's REALLY IMPORTANT to keep moving. I feel a lot better than I otherwise would have.

Believe it or not, I wrote almost every essay of both my degrees while on bed rest. It was a choice between concentration or being upright, so I chose concentration. I have always had to work lying down for things like that. I have also been doing research in bed in Dundee- for my master's dissertation. My dad went to Oxford and fetched the books I needed, and then came all the way to Dundee (500 miles) with my mum, and my laptop. I spent a lot of time trying to be constructive.

But on days when my vision oir consciousness were very altered, I had to let go of that, and just give in to trashy day time TV, like Jerry Springer. It's amazing how much better that stuff can make you feel- at least we're not as freaky as the people on THAT show! :ph34r:

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