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How many of you are worse now and bedridden


bamagirl
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Bamagirl - If you do have Lyme Disease I can tell you from my own personal experience that I was completely bedridden , housebound, and sicker than I ever thought was humanly possible.....

After many years if tretment I finally have recliamed some of my life, but I went so many years without proper diagnoses that it is still a battle,,,,although I am, about 80% improved.

I would really urge you to see a good Lyme Dr.... The POTS cannot get better unless the Lyme is treated if that is indeed what is going on with you...

Take Care and I hope you feel better ;)

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Hi I am pretty much house/bedbound.. I really only leave the house to go to the docs or to make a weekly grocery trip... and that weekly gorcery trip.. I have to use a powerchair in the store... and I dread carrides thesedays.. b/c I cant handle carrides that are longer then about 10-15 minutes... and usually end up reclined in the seat of the car.. I also have a reclining wheelchair (power one) that I use.. but right now have no way to get it in and out of the house.. :o

I feel for myself that I have gotten worse.. over the past year..

I also want to mention that I was relatively active (asa ctive as aposty could be) on a day to day basis.. December of 2004.. I was still able to go to school.. on apartime basis..

But now. here on January 24,2006.. I am lucky that I can stadnt o brush my teeth most days... its not that I dont want o be physically active.. and get out there and do all that I want to (this includes the babsics of life!!).. my body wont allow me!! even when I push I pay dearly for it...

for me personally.. I havent found "what works for me" in regards to phusical activity.. I mean in 2004.. my pots was bad then.. but I was still able to force myself to walk for 30 minutes in the evening... and now I cant even tolerate or handle walking for even 2 minutes.. without bumping into the wall..I agree with Emily.. I too was never what you called real active (or healthy).. but I managed..somehow.

But I too have had POTS most likely since birth.. and sometime its not bad.. and times like now.. its just rotten..and downright scaryat times.

BAbamgirl~~ do what you can and take baby steps. and keep on fighting.. something is bound to come up that will you as well as the rest of us!! you are a smart cookie.. hang in there ok!!...

Edited by dizzygirl
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I too am homebound...and spend most all of my day in a recliner...not usually flat in bed except at night (which is a LONG night!)...

I have been much, much worse this past year after GB surgery and never got to back to where I was before that.

However, I was never exactly functioning very well, but I could at least have some days of not feeling like total 'poo'... :o

I would echo what Jenn said!

Emily

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This time last year I was pretty much housebound. I ended up housebound in St Andrews, too. It does become a vicious cycle though- the more you stay in, the worse it gets. But by the same token, if you over doit, that's just as bad.

Something that isn't explained enough to POTS patients is the importance of graded pacing exercises, so that you can increase your level of functioning.

Too many doctors seem ready to diagnose and identify POTS, but not actually to try and diminish its impact on the lives of their patients, I would posit.

Today I could really have done with my wheelchair--felt so bad-- but I made myself walk. I'm glad now I did, because I think it helped. Although I did nearly fall in the street! Doh! I think Imade a good job of being a weeble today- I wobbled and I didn't fall down!

I don't think there are many here who end up permanently bed bound. I think that's remarkably rare. My understanding is that this is very much a fluctuating and unstable condition as I've found out once more over the last 7 days! Last week I flew round town on my bike! today I could hardly move and was walking like I'd had vodka for breakfast . :o

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Not me. I've gradually adjusted to having POTS, and even though I have good days and bad, the good outweigh the bad. I still have many of the symptoms I've always had, but I have adapted well. And I feel like I will continue to get better, but it may take many years before I am normal again. Or I may never be normal again, but oh well.

Amy

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