as small as a world and as large as alone, chronicwithcats: It’s so frustrating when people...

5:20pm July 22, 2014

It’s so frustrating when people just don’t get it. I’ll tell my friend my legs aren’t too good these days and she’ll say “is it because you lay around all day?” “Would it help if you exercised?” And it hurts. Because little do they know how sick this disease really makes you. I know it only gets worse from here before I get better, and I just can’t stop worrying about what my friends think.

When I started having trouble with adrenal insufficiency + myasthenia gravis(?), my brother asked me if I thought my weight had anything to do with it. I was at the point where if I moved a muscle, it would give out and collapse. You don’t get that at 180 pounds, which is where it was when I started, and you don’t get that at 245 pounds, which is the weight I gained because I couldn’t get out of bed. But my brother has always been skinny so it was easy for him to pass that kind of judgement, he had no idea that just being somewhat fat doesn’t cause that level of debilitation.

People also didn’t get that the less I exercised, the better I functioned. Which is exactly how myasthenia gravis(?) works and is exactly how severe adrenal insufficiency works. But everyone told me if I just exercised enough I’d get better. If I exercised at all, I collapsed, threw up, and had other completely intolerable symptoms that literally made exercise impossible. And by “exercised at all”, I mean that I used to put my friend’s compression boots on her legs and I had to stop doing that because even that small amount of exercise required to tighten her compression garments, caused the collapsing and vomiting thing. I couldn’t go across a room in a wheelchair without falling every time I transferred, and people were talking about exercise.

Exercise intolerance is a thing. It’s a real thing. And it was dangerous, as in life threatening for me to exercise at that point. I’m only able to exercise now because I’m on a powerful steroid medication that replaces the hormones my body doesn’t make anymore, and also on Mestinon which helps with the probable-myasthenia. Without it, I’d still be completely exercise-intolerant, in bed all the time, and using a powerchair. Most people don’t have something this easily treated, or if they do, then like me, they wait years to get a proper diagnosis.