MG symptoms are similar to ALS except that they don't seem to be progressive in the same way, and the worst parts like breathing crisis, are usually more temporary lasting a few weeks or even just a few hours.
MG causes my muscles to be very weak. Sometimes I'm better or worse but I always have difficulty standing, walking, sitting upright, holding a phone, handwriting, stepping up a curb, cutting vegetables, bathing, brushing my teeth, texting/typing and so on. Blurry vision makes it hard to read, which used to be one of my favorite things to do. MG can also be embarrassing when it affects my facial expressions or ability to smile. The worst is when it makes me slur my words and I can't speak clearly. It's scary when it affects my breathing or I choke on food. It's really scary when no-one is around to notice! What I hate most is when I'm extra sick and stuck in bed for days in a row. Unfortunately, it happens a few times each month.
MG causes burning pain or cramping in my muscles but most of my pain is from other medical conditions like Fibromyalgia, Peripheral Neuropathy, etc. (Most people with one autoimmune issue, will at some point have others). My skin feels like I've been beaten and burned down my back and my arms, my ribs hurt, my joints hurt and sometimes everything else hurts too. Sometimes the pain is just incredible and pain meds hardly make a dent.
Vertigo caused by Meniere's went away for a couple of years but for some reason it's coming back more often again. The worst part is that it feels like my brains have been scrambled and it makes my eyes spin like a disco ball even when they're closed.
If my sister isn't busy, she'll make a meal for me. She cuts my meat and we've discovered the food processor is handy when I'm too weak to chew. I usually eat in bed so I have the headboard to lean my head against. In fact, I spend most of my time in bed for the same reason. Thank goodness I'm usually able to drive so I can go to the doctor or grocery store. I stick with the store I know will always have disabled carts available. My sister's church donated a scooter for me but so far, we haven't figured out how to get a lift or trailer for it.
Being so sick can be very isolating and lonely since I don't have the strength or stamina to socialize in person. It’s exhausting and painful to sit upright long enough to have a meal with someone and it's painful to hold a phone and exhausting to talk, or even listen for long. Facebook has become my best friend since it doesn't require any more effort than I am able to give.
The past couple of years have been emotionally devastating. It's tough to lose your health, your friends, everything you've worked for all your life and the ability to support yourself. It's an awful feeling to be forced to depend on others for almost everything. But if I hadn't experienced this, I would never have known or understood how kind and caring people could be. It’s been amazing to see how many wonderful people have stepped into my life since I became so sick and most only know me from Facebook. I would never have learned so many of the lessons I'm grateful for now. No way on earth would I choose to be so sick, but I believe I'm a better person now.
Oh, I have insurance now. Thank goodness!
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