I’m not looking for advice. I just need a place to whine and cry and moan and feel good and sorry for myself. (And I wouldn’t be adverse to, um… getting a Doper hug or two, if it’s not too forward of me to ask?)
I have facioscapulohumeral muscular dystrophy (that’s a misnomer if you ask me; in my experience, it attacks any and all skeletal muscles, not just those of the face, shoulders, and arms). I’ve known this for a good long time, but I’ve tried to carry on like a normal person. Recently, though, it’s just become too much. Over the course of the last couple years, my diaphragm and abdominal muscles have become increasingly weak, so I can no longer take deep breaths, and I become winded just from the effort of standing up and walking a few steps. I sleep with a BiPap machine which forces air into my lungs so my muscles don’t have to work so hard while I sleep, which has been a lifesaver (perhaps literally?) because I just about can’t breathe when I’m reclining anymore. I’ve become very dependent on it, and wonder if and when the day will come when I need something like it to help me breathe all the time, not just in bed. TMI warning: I even took it to my last gyno appt. so I could breathe while laying on the examining table. Goodness only knows what the ladies in the waiting room thought that contraption was for, though.
I’ve been in a lot of pain, too. Most of the time it’s just in my mid to lower back, but if I overdue any lifting, reaching, or carrying, then my shoulders, upper back, and chest hurt too. I’ve talked to my doctors about it, and one prescribed Celebrex, but insurance wouldn’t cover it (I’m too young, they only want to pay for it if you’re 50 or older). So they tell me to take 2 Aleve every morning and night, and Tylenol for any breakthrough pain. I guess it works ok, the main thing I have to do is remember not to do anything too strenuous, which turns out to be just about everythiing.
Therefore, I’m retiring. I posted a while ago about my intention to retire someday soon, but now I’ve set a date: March 31. I just can’t do the work anymore. This month has been extremely difficult. Right at the beginning, I pulled a muscle in my side (or somewhere, I hurt lots of places) and could barely move for several days. When I’d start to feel a little better, I’d go back to work and end up feeling bad again. I finally had to take a few days off to recuperate, and, when I went back to work, I told my boss this month would be my last. And I can’t believe how fast this month is going. In a week, I’m going to be a free woman. I should be happy, but I can hardly talk about it without crying. I’m permanently and totally disabled. I’m 29 and I am retired. If my husband were smart, he’d wheel me to the nearest old folks home and restart his life before he’s 30.
And, to top it all off, now I have DIABETES. I saw a dietician a week ago and I met the diabetes counselor yesterday. It’s so depressing. I hate the lancet. It feels like getting snagged on a staple. I hate figuring out how many carbs I’m eating. I hate worrying that every “funny” feeling I get might mean my blood sugar is too high, or too low, or I’m about to go blind, or lose a foot, or lapse into a coma. It’s all so overwhelming.
I was going to whine about some other stuff, like how I can’t dress myself, I can’t drive, I can’t hardly hold my bladder or bowels until I make it to the bathroom anymore, I still have lichen planus, I’m morbidly obese, my feet are swollen, etc., etc., but I’m too damn depressed. I know, I know, I need to get back into therapy, I need to find support groups, I need to focus on the bright side of life. But it’s hard. It’s so hard. And I’m so weak and tired.
My quality of life is in the toilet, and I’m just waiting for someone to flush.
Well, I’m getting pretty hungry, so I guess I need to figure out what I can eat for dinner before my blood sugar gets any lower I die or something. Meal planning and carb counting are a pain in the butt, but at least I have a new hobby to keep me occupied when I’m retired.