mountain girl Posted July 30, 2009 Report Share Posted July 30, 2009 I do not feel well most days, but there are occassional days or hours where I will feel normal. At first it led to disappointment because I would think I was getting better, but now I am learning just to enjoy those times of feelling somewhat normal when I CAN. And like others of you made reference to sometimes I even think I can do more than I really can.I do manage to work but that consumes most of my energy for the day. I often have to spend my half hour break from work laying down in the car just to get thru the rest of my shift. My husband and daughters have lived with me enough to know that I am not just being lazy because I was always on the go before and enjoyed that, but sometimes it is hard not to feel like I am lazy. It is like my mind wants to do things but my body won't let me. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted July 30, 2009 Report Share Posted July 30, 2009 Yeah I do - check this out: When i go on holiday I can go for weeks - recently over a month without any POTS symptoms that were noticable. (this may just mean that they were less than usual so I didnt notice) and then I come back to Australia and it comes on again out of the blue. So far my experience with POTS has been periods of relative wellness - symptoms maybe 10-40% but light enough for me to start exercising and stuff - then for some reason either the holiday, the flight or something seems to bring it back and I can be totally disabled again - unable to sit even this time for a few weeks. I remember Ernie described this before hers came on bad forever. She had a similar problem to my own possibly so that worries me a little. Quote Link to comment Share on other sites More sharing options...
gertie Posted July 30, 2009 Author Report Share Posted July 30, 2009 Thanks everyone. Sometimes before I go to bed at night I plan all the things I'm going to do the next day & when a.m. gets here I realize it's another day in which I'll accomplish nothing. My DH can't understand why I can't plan things ahead. Life seems to be a constant struggle for us. Quote Link to comment Share on other sites More sharing options...
erik Posted August 15, 2009 Report Share Posted August 15, 2009 I have... sort of. Now that I know what to look for there are little symptoms most of the time... but ignoring them works for me sometimes (and bites back hard at others). I describe my POTS symptoms as "variable & episodic" and "mild/mid disability" group in terms of daily functionality... but with a significant impact on overall life (I'm unreliable you could say . I have yet to measure a "normal" pulse change upon standing since that first time I or a doc has made that specific measure, however. Quote Link to comment Share on other sites More sharing options...
ladyt Posted August 16, 2009 Report Share Posted August 16, 2009 i dont.. not anymore.. but some are better than others.. and some are good and really bad in one ( like when going shopping and then after being ucky, well i dont go go, i wheel wheel.. ) Quote Link to comment Share on other sites More sharing options...
gertie Posted August 16, 2009 Author Report Share Posted August 16, 2009 I've had dysautonomia for many years & just when I think I am learning to cope with everything something happens I never thought of before or I have another illness to add. I can't remember a day of feeling "normal". Quote Link to comment Share on other sites More sharing options...
cordellia Posted August 16, 2009 Report Share Posted August 16, 2009 yes, there are hours that i feel almost well.. how i cherish those times... but a whole day 'symptom free'--alas never...not in seven years... Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.