"Ya take the good, ya take the bad, ya take it all and then you have the facts of life."
There is something so brutal and unfair about this disease. I have been feeling so strong... obviously that is the UP! However, I have been doing so much more, and actually ENJOYING some things, that now my hands and arms are suffering for it. Weak, weak, weak! My grip is really bad right now. It's worse than when just my brain is going 90,000 miles an hour. Now my body wants to do the same...the spirit is ready to fly....and the body just takes a poop. FRUSTRATING!!!!
I'm not really complaining (I'm telling you this because you can't hear the tone of voice since I'm not speaking...) I'm just venting my frustration. It's such a mindbend, ya know? One day you overdo it, so you expect to feel like poo. Then for a while you're feeling strong...and even after 8 stupid years you forget that you have limitations, that you're NOT going to feel like this for ever, that "normal" just isn't going to happen. It's like maybe THIS time will be different, and the symptoms just won't come back!
It's so hard not to get angry. It's so hard to keep disappointment at bay. It's so hard not to be lulled into "maybe it's a remission", and then BAM the symptoms come back. It's just irritating. I've NEVER been a "fly-by-the-seat-of-my-pants, go-with-the-flow" kind of girl. Structure and planning. That's me. I don't like change. At all. So to constantly be in limbo....one day this, the next day that....ARGH!
And then there's Jacob. Try explaining to a 2 year old (albeit a brilliant 2 year old! : ) why Mommy can do something one day, and not the next. He gets upset, I get upset, and so it goes. When I feel good, I go flat out. I go and go and do and do until I can go and do no more. I never know when I'll feel good again, so I take the fullest advantage of what I have.
I used to schedule things, then not doing anything for days ahead of time so that I would make sure and feel good for that day. Doesn't happen. Anything can make this stupid disease worse anytime. Not getting a good night's sleep. Fighting off a cold. Stress. (Which there's virtually NONE of, raising a 2 year old!) I could rest all week, and still miss the scheduled event. So now, I schedule things, but if I feel fantastic the day before, I go and do, and if I still feel good the next day, so be it. If not, oh well. At least I didn't blow my good day.
It's like waking up every morning with a bunch of loose change in your pocket. You never know how much you're going to wake up with. But what you have is what you have, and when it's gone, it's gone. That's like strength and energy when you have MG. You wake up with just so much, and when it's gone, you're done.
Anyway. Thanks for listening.