frustrations

For the most part I am upbeat and positive about having CMS. I accept my challenges and limitations and move on. But sometimes I have a really hard time accepting my disability.

I don't think I've mentioned this before, but when I start to get sick, stressed or overworked, I often experience something called a "Myasthenic Crisis." It's where my muscles get overly fatigued and doing normal activities like holding my arms up to brush my teeth, typing on the computer, or even breathing, are really difficult. It's a really scary experience and so when I start to feel one coming on, I have a panic attack to go along with it.

Well, I had one last week and it was not fun. I was at work too, to make it worse. I had been feeling really tired and worn down that week but I didn't have a lot of sick time at work so I tried to power through it. That wasn't the best idea, because at about 2 pm last Friday, it really hit me. I was having trouble typing, my eyes were droopy and it was hard to swallow. So I texted Josh and had him come get me. 


Two of the three crises I've experienced have landed me in the ER and left me with some hefty medical bills, (FYI, it's REALLY expensive to ride in an ambulance, even if it's only for two miles). and the worst part is  that going to the ER is that it doesn't make anything better. I go because I am having trouble breathing, but because my oxygen levels are always normal, they can't do anything for me except monitor me, and none of the doctors have ever heard of CMS so they don't understand what's even going on. So because it just turns into a really expensive nap, I was determined to get through this one without the hospital.

Anyway, Josh rushed downtown, picked me up and got me home. Being the most wonderful husband, he calmed me down, made me lay down on the couch and took care of me. Thanks to his calm reaction, I was able to avoid the hospital. Yippee!! But what I wasn't able to avoid was the next three days of resting. It usually takes me a few days, if not weeks, to get through a crisis. I pretty much have to avoid all physical activity and focus on taking naps, laying around a lot and doing breathing exercises to make sure I get enough oxygen and relax.

Going through a crisis is really scary and frustrating. I hate feeling so helpless. It makes me feel extremely vulnerable and it's a reminder that no matter how hard I try, my disability is something I can't just ignore.

But, a week later, I am feeling back to normal and so happy that I have such a great husband to support me. I even got out and did some walking yesterday, which is encouraging.