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Malaise


mancmm19
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Hi All,

Besides our POTS episodes, in general, does anyone ever feel "normal?" I get sick most days when I stand up, ya know, the usual heart pounding seeing spots, about to pass out thing...and then there are the days where I have my episodes for whatever reason and feel like I am on the verge of dying. However, even on my "good" days, I never seem to feel normal. I remember who I used to be 3 years ago, and I haven't felt that way since I got sick. I was finally diagnosed with POTS a few months ago and can definitely tell when the symptoms are in play, but why do I constantly feel not like myself? I have this malaise 24/7 all day, everyday and it has not let up ONCE since this all began in October of 06. Can anyone else relate to this indescribable feeling of misery all the time or do you just get symptoms upon standing?

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Nope, never feel normal. However, I've been sick for about 3 years now so I think I'm beginning to forget what normal feels like. It's kind of a good thing. I just try to deal with how I feel on a day-to-day basis.

I took a small dose of octreotide once (caused horrible GI cramps and big D so couldn't keep taking it). But my head was so clear! I hung a new shower curtain liner, dusted for the first time in a year, read a book and felt alert! My pain was nearly gone, and I slept well. It lasted for a few hours and I realized how badly I felt all the time in comparison to "normal." I was pretty depressed the next day.

I realize how sick I am when I spend time with my family and friends and see how much they're able to do! I try not to think about it too much because I know I'm doing everything I can to make my situation better and there's nothing else I can do right now.

Michele, I had my first visit to the ER for tachycardia in 10/06 also! Must have been something in the air... I had mono 6/06 and the Mayo doc thinks that's when my neuropathy was triggered.

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Hi There,

I don't want to "re-invent" the wheel, and thankful put it very well. In the interest of responding, while at the same time really needing to lay down, I will copy and paste because I feel the same way. I have had worsening dysautonomia for seven years now... May 2009 will officially be 7 years, and I can't believe it's been that long!

Nope, never feel normal.

I'm beginning to forget what normal feels like... well, in my case I think I may have officially forgotten.

I just try to deal with how I feel on a day-to-day basis.

I realize how sick I am when I spend time with my family and friends and see how much they're able to do! I try not to think about it too much because I know I'm doing everything I can to make my situation better and there's nothing else I can do right now.

~ Broken_Shell :(

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join me in with the never feel normal crowd. Even when I have my good times (sure wish there were more) I always feel like there is a chance I am GETTING better, but still don't feel normal. Laying donw improves my symptoms, but that just makes it tollerable, so I won't fall down! I feel that I am always fighting fatigue and pain. I hope one day it will go away for everyone!

Suzy

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Hi,

I guess I have to add to the me too crowd of not ever feeling "normal". BUT, at the same time I do not think I know what "normal" is... I have had some part of this all my life. I have always been tired, lethargic, etc... So, I don't think I know "normal" or my potential "normal", all I know is what I feel like on the majority of days. For me this is to the point of having enough energy to take care of myself (minimally-no frills, not get around enough to go outside on most days), keep the apartment from getting too disgusting (try to tackle a "project" or two a day), and do some "work" on the computer. Other than that I tend to run errands a day or two a week and spend the rest of the week recooperating.

If I absolutely force myself up and to do things I am an absolute zombie, just going through the motions. I am not really emotionally or mentally there, only my physical self is really there. Sounds weird... :(

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I don't think I ever feel normal anymore either, although it's getting to be long enough that I've been sick that it almost seems surreal that I ever used to have so much energy and be such an over-achiever in school and work and my social life. It's hard to reconcile those memories of myself with the person I am today.

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