But of course, I don't have a magic switch.
I often wonder what people think when they see me using a powerchair for mobility, and then a walker, and then walking on my own, and then using a powerchair again. Do they think I am an attention junkie? A faker? Making this up for my own sick pleasure? Because I'm not. I hate MG. I wish I could make it go away and never come back.
Myasthenia gravis moves around my body, choosing to weaken different muscle groups at different times. Sometimes it settles into my hip and thigh muscles. When it is there, I feel as if I have invisible weights strapped to my legs. The longer I walk, the more weights I carry until I am crawling. I use a powerchair because I hate crawling. Lately MG is in my shoulders more than in my legs. It makes brushing my hair harder, but walking is easier... for now anyway.
Myasthenia Gravis means grave muscle weakness in Greek and Latin. The grave part of myasthenia gravis is when MG weakens the muscles involved in breathing. This happens to me at least weekly to one degree or another. It is usually mild, but it has hospitalized me before. MG breathing weakness is not like an asthma attack, or a coughing fit. It is subtle and truly evil.
To simulate what MG breathing weakness feels like, try this:
- Cover your mouth and nose with your hand. Breathe in.
- Remove your hand. Exhale.
- Cover your mouth and nose again.
At times MG settles into my throat, making swallowing difficult. Or it decides to weaken my tongue so I slur my speech. We blink about 100,000 times a day, which explains why my eyelids fall down sometimes. Sleepy Dwarf, in Disney's Snow White was patterned after one of Walt's friends who had myasthenia gravis. My eye lids fall down and people ask me if I'm tired when I'm not. My eyelids just need to reboot. Eye muscles move constantly, and they fatigue at times giving me blurry double vision. I have magic prisms in my glasses that let me see a single image even though my eyes are not aligned. My eye doctors are amazing people.
All day long MG moves around, weakening different parts of my body. It is disabling, but never the same disability twice.
Right now, I am blessed. My MG is fairly quiet, although I'm not in remission anymore. Medications are keeping it quiet enough for me to enjoy my life. I do enjoy my life, not despite all my illnesses, but with them. Chronic illnesses are as much a part of my life as my smile, or my freckles. They're here to stay. And so am I.