My Life is Now Boring
That’s right, my life is now boring.
If you have been wondering how I went from a regular daily posting (only missing a few days) to only posting about once a month, it’s called myasthenia gravis.
MG has been controlling my life while I attempt to learn how to control it. Well, one really can’t control it, but what you do is learn to live within your limitations — or so I’ve been told.
A couple of days ago I thought I was SuperMan. It turned out I was SuperMGan (the G is silent). I felt great until all at once, the symptoms struck. They hit so hard and fast I thought I might die.
MG is a silent attacker. Sometimes it gives warnings. For example, I’ve learned if I start losing my voice, it’s going to hit hard in the next day or two. However, if I’m not doing much talking, it can hit rather rapidly.
I wish I could write about exciting things I’ve done lately. Right now, trips to Israel, exploring waterfalls, visiting unique places and photographing them is out of the question. I get about 60-90 minutes a day of being on my feet. The rest of the time is spent reclined in my special chair or completely reclined in bed.
I find myself re-living past adventures through the photographs I took. I used to wonder why I use so much hard disk space with images from the past. Well, now I’m glad I did. I can look back and say, “Wow, that was a fun time. I’m glad MG waited so long before it knocked me back.”
Better days are ahead, however, they will be different. My doctor recently told me it is a disease to be respected and I have to learn to limit myself. The other day I didn’t do that. I should have stopped and said to myself, “I still feel like I could do more, but if I did, it could land me in the E.R… or even worse.”
Mentioning this to a fellow myasthenic, he said he did too much about a week ago and has been in the hospital ever since. They have him on blood transfusions to rid his blood of the acetylcholine esterase. It’s kind of like dialysis. They remove your blood, filter it, and put it back inside. It’s one of the few last-resort treatments for MG in a crisis situation.
I don’t want to be in that situation.
I asked my wife to be my voice of reasoning. She has my permission to say something like, “Okay, you spent an hour in the kitchen making a cake. You’re done for the day. You need to rest the rest of the day.”
My agreement was to listen and abide.
She doesn’t want me dead, and I don’t want to end up in the hospital.