In initially I was tired all the time as well. I really think I had this for years - I mean, years! My hubby was always on me for being "tired" all the time. And I was. Then the other started to go and it was downhill..........Whatever I caught in Belize made it go downhill FAST!
Has your doc talked to you about steroids? THey are a pain, but have made a huge difference for me.........
It is hard on our spouses and family. Some of my family members are still in denial. Or they are really mad at me for getting sick. Or they ignore me. Don't get me wrong, most of them are great, but since so little is known about this goofy disease, they tend to ignore it!
It may take your wife some time to get used to it, but I bet she will. It's just hard.........
How are you feeling today?
Erin
Quote:
Originally Posted by Gdbyrd
Hey guys. First off, the meds. I take Mestinon 60mg 1-5 times daily. It's what's really weird about me..90% of the time I couldn't tell I'm weak, I just feel sleepy a lot. I'm not a very facially expressive person to begin with, so I think that helps. I mostly remember to take my meds when I start having trouble swallowing..or if I've been laughing a lot. From my shoulders down I feel pretty normal. I get a lot of muscle twitches though, and my neuro is pretty certain I'm in the process of converting to general MG......At least then maybe I could be looked at for a thymectomy.
I really haven't noticed too much. I have a 2 year old and as such, spend a lot more time at home than being outside doing stuff...as they get older I think is when I'll start having trouble adjusting. So for now, the denial is still working great. I think I'll skip anger. I've always tried to make the best out of the hand I was dealt.
More than anything I can say my wife struggles with it. She gets upset and frustrated when I have to take a lot of breaks for stuff I used to be able to breeze through.
I'll tell you, the most frustrating part of this disease..is that no one knows what it is! That, and my parents. They are both nurses as well...and they are very set in their ways about nothing being wrong with me..so when I complain or discuss it, it's met with hostility. I guess they're not up to it, and I'm not going to force it on them.
Anyhow, ty guys for the welcome and it's nice to talk to some people about this sort of stuff. Sorry I typed a novel..it's a bad habit of mine.
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