Accepting limitations.

[TZ]

Hi. I think I've only posted here once a long time ago, but I think I should start posting here more often..
Some of you may know me from other forums and know that I have a chronic blood disorder called essential thrombocythemia...
http://en.wikipedia.org/wiki/Essential_thrombocytosis.
I've been to Mayo Clinic twice now for treatment...And using Pegasys (peg interferon) I've mostly gotten the disease under control.
However, being stable doesn't mean I'm normal...And it really hit me this past few days what having a chronic illness really means.
Fatigue is a huge issue with this disease. I've learned to live with it on a normal basis but going on vacation...I really noticed it...I was at the beach and I found I could no long swim in the surf for any exteded length of time and once I got out I was so physically drained that staying upright was difficult. Sigh. Plus I had been out the day before walking around in the hot sun with a friend and got dehydrated as we forgot to bring water with us. Time was that wouldn't have bothered me..But I paid for it the next night having symptoms (headache, tingling in my hands and fingers) in the middle of the night.
I think it really truly hit me that I'm not the person I was 3 or 4 years ago, and I'll never be that person again. And knowing that even when I'm enjoying myself on vacation I have to pace myself...difficult. You go on vacation to forget your troubles but my trip unhappily made me ever so aware of how things in my life have changed. It so depressed me it made me cry. I guess this is something everyone with a chronic condition has to deal with...I've been too busy just trying to get my damned disease under control that I didn't even think about this aspect till now..:(

[mopinko]

1. yup.

been thrashing that out myself for the last few years, and i still don't really have a grip. still don't really know if my autoimmune "abnormalities" are going to blossom into a life threatening disease, or for that matter if they are behind the things that are falling apart on my body, like my intestines, or the discs in my neck that just disintegrated and nobody knows why.
but the fatigue is so crushing. i am getting a sleep study this week, and the sleep doc is real convinced that he can do something about that. i am trying not to believe that until i see the results. one thing i have got figured out for sure is that, in this case, hope is for suckers.