as small as a world and as large as alone

12:54am July 23, 2014

bittersnurr:

youneedacat:

chronicwithcats:

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.

Yeah I had a similar problem

I have mitochondrial disease which means my body is basically constantly running on a “brown out” level of power. My symptoms are caused by having so little energy my body can’t even handle basic functions (my digestive system slows down, my blood pressure tanks, I can’t regulate my body temperature etc.

Combined with the fact I average maybe 5 hours of sleep and the fact my digestion is often too messed up to absorb food even when trying a specialized diet the amount of energy I make wouldn’t be enough even for a healthy person to function on, and because of my condition I need MORE than a healthy person because my body just loses a huge portion of it.

The result is basically everything is exercise. I tried to wheel myself a block away from a parking garage to a building in Boston recently, a distance of 1000 feet. The next day I was in the ER because the stress on my body from doing what would have been a leisurely walk for the average person was enough to cause my body to freak out from the lack of energy and stop my stomach and I needed to get an IV because I couldn’t even ingest water.

Exercise could technically help me, but what it would consist of would never be considered exercise by a healthy person. I have to work up to being able to do even a fraction of the amount of stuff a healthy person could do in a normal day. My “exercise” regiment is forcing myself to not use my wheelchair at home and that is about as hard as I can push myself without terrible consequences.

About a year and a half ago my at the time PCP told me he was pulling all my tests/treatments and told me to exercise and go to therapy to treat my “fibromyalgia”. I sometimes just think about that and wonder what would have happened to me if I had listened. They were blaming my gut motility on anxiety then too. I think it’s possible that if I hadn’t gotten a second opinion I would have at least progressed to a very severe level which would have me irreversibly bedridden by now, because I was being told to push myself in unsafe ways and given no treatment to address my actual problems.

Not exercising is important to keeping me healthy because I am only in stable condition assuming I don’t push myself. I still have nothing I can do if I have a flare up other than go to the ER and cry (the ER can’t do much of anything but give me fluids, they refuse to give me painkillers even).

Yeah mito disease is something they still have on the table for me, because it would explain a vast array of conditions I have, including the gastroparesis and autonomic symptoms.  But he hasn’t done the biopsy yet, it was next on his list after seeing what the single-fiber EMG showed (which was abnormal).  I’ve also got the thing where my body stops regulating temperature at all, going to wild extremes regardless of weather, blankets, etc.  And other signs of autonomc

At any rate, exercise intolerance is a real thing, and too many people get shoved into this “graded exercise” thing that’s particularly aimed at people diagnosed with chronic fatigue syndrome.  Which is particularly bad for those with the very severe forms of CFS/ME, which in many cases may well be other very serious conditions going undiagnosed.  At any rate, it’s still open to debate as to whether I have mito disease.  I hope I don’t.  But I hope most of all that whatever I do have, shows up on tests easily, because for me testing is half the battle.  But the stuff I hear about ‘graded exercise’ for CFS/ME makes me really mad, because it basically treats them as if they’ve just got themselves into a rut by not exercising and need all these enlightened physical therapists to bring them back to normal.  And for a person with very severe CFS/ME (or something like mito disease misdiagnose as that) that’s going to kill people, and it scares me a good deal.

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