Depression has reigned for two days. It’s so difficult to be somewhere where I just do not and cannot fit in no matter how hard I try. I must find a way to get away from the empire at which I am employed.
I’m an afterthought in our section –when I’m thought of at all. People think I’m joking when I say I feel like the red-headed stepchild of my agency section. I’m dead serious.
I’m so tired of fighting everything every day. I fight with myself, I fight myasthenia gravis symptoms, I fight everyone (except my family who has seen and heard me at my worst) regarding my illness everyday, … Myasthenia gravis is an “invisible” illness. It bites! No one gets how this thing feels from one minute or hour to the next. I don’t care that I have a fake smile plastered on to please the masses and to avoid the, “Smile, it’s not that bad” comments when I don’t smile. Yes, you idiots, it IS that bad sometimes. Deal with it! Try struggling to lift your legs to get in your car because your leg muscles are very weak. Try trudging across a parking lot to walk into a building on a hot and humid day feeling as if your legs, which are lugging around invisible 100-pound weights, are going to collapse underneath you at any moment. Try looking at yourself in the mirror at the end of the day and looking at a face that looks as if it has been the victim of a stroke because the muscles have lost their tone during the day. Try reading something while seeing double or experiencing extremely blurry vision. Try talking loud enough for people to hear you, but you can’t because your diaphragm and/or throat muscles are too weak to help you project your voice.
Try holding a pen or pencil to write only to discover that you can’t grasp it. Try pulling your slacks up in the morning and struggling to curve your hands enough to be able to grasp and pull them up. Same with putting on socks or shoes! I drop things often because my muscles just give out in my hands and arms. Don’t tell me, “It’s good exercise” for me to have to stop and bend over to pick up whatever I dropped. That is not the damn point. It’s frustrating, plus I don’t have a lot of money to replace crap I break. Just because I’ve gained 45 pounds while being on this stupid medicine called prednisone doesn’t mean I’m lazy and need to exercise or that I need to go on one of the many diet fads going around. If I could exercise the way I used to or even half the way I used to, I would. Four miles of walking every other day and weight lifting the days in between—it was awesome! Exercise these days makes my muscle weakness worse. Read about and talk to other people who deal with this disease you ignorant, stupid, assuming idiots!!!!!
I’m trying so hard to keep it together. I’m trying to be optimistic about future treatments—even possibly chemo. It’s very difficult given the one treatment I was so excited about in February nearly killed me. Chemo itself could kill me—if the crap I’m fighting every day these days doesn’t kill me first.
I need a break, desperately. It’s hard to take a break when you don’t have leave available to use for vacation time thanks to having to use it for sick leave as you accrue it.
Tomorrow’s the first day of our annual functional exercise at work. God help me maintain my composure!