Coping with autoimmune disease with grace (sometimes), humor (always) and dignity (rarely). Plus knitting and cats!
September 16, 2011
Invisible Illness Week
I just read this blog post and was thinking about how invisible illness has impacted my relationships. It's almost impossible to find a man who's willing to even try to cope. It's always painful, being rejected for something I have no control over. People basically say "that's too hard for me to contemplate dealing with, so I'm abandoning you to it, alone." Which is mean and feels even more lonely than when I started.
I've been having a lot of trouble typing lately: my fingers aren't coordinated with my brain or each other. Typing has always been harder when I'm in worse pain but not to this degree. Trying to tease out which of my symptoms are due to pain, or muscle tightness, or ??? is so hard. Fibromyalgia seems discounted, finally. I saw a new doctor this week who's actually interested in me, which is huge. His tender point exam was different from previous ones and avoided tight connective tissue, so I had none of the major diagnostic criteria. This means that my stupid is either from pain, or something neurological is going on. Next up I'll try to get tested for Lupus, MS, Lyme, and whatever else my main doc can think of. I'm trying not to think about more invasive tests, like another EMG.
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I think there are men out there who will cope... my husband did (twice, his ex wife was far worse off than me by a longshot). It just takes time. I am sorry about not being able to type...and hope the tests go well. At least they may establish something.ReplyDelete
Interesting in that blog post you linked, the person wrote "there are still some days when I think I'm not trying hard enough or am just being lazy". There are some days when I still think its all in my head even though I know its not. Do you ever feel similar? Just curious.
I hope there's a man out there for me...somewhere.
I do think, if I just pushed harder, etc. But if someone dares say the same I have no pity! Everything is so much work that I try to be kind to myself.