Quote:
Originally Posted by jana
Man, did I EVER open a can of worms?!?!?!?!
VERY interesting to read everyone's point of view. I say that WHATEVER you feel or think is VALID -- whatever is right for you, is RIGHT. I was just saying what I think/feel.
What I have noticed FOR ME -- is that IF I stay RILED UP and UPSET about having "the beast", I just have worse symptoms. If I stay calm and "accept" that MG is now a part of my life -- MG "usually" seems to calm down. NO, it never goes away. Never, ever, EVER! But, I manage to deal with it.......most of the time.........unless I'm having a rip-roaring pity-party. 
Like Annie and a couple of others on this board, I don't have many options -- Mestinon is "it". So, my attitude IS the key to managing my disorder. If I get upset and stay upset -- I am ONLY hurting myself. So, I CHOOSE not to stay upset. Is this easy, NO!! I pray a LOT!!
So, some of you may say -- oh, jana must have a very "easy" case of MG. Well, maybe I do. I don't know. I can't say more than a couple of sentences without losing my voice. I cannot run more than about 6 steps without gasping for air. I cannot count to 10 without running out of air. I cannot blow up a balloon. I cannot hold my breath underwater AT ALL. I got excited about finding a lost item the other day and started clapping my hands for joy -- almost passed out. I don't know -- maybe I'm healthier than you -- or maybe I'm worse. All I know is this -- I CHOOSE to be optimistic. Maybe I'm STUPID. Probably so.  Wouldn't be the first time. Or the last.  But, so far, I haven't been intubated. Would my method work for you? I have NO idea. I don't know if you can MAKE yourself have a certain attitude. Maybe I was just born this way.
If I'm stepping on toes AGAIN, sorry. Not my intent. If you feel I'm doing more "harm" than "good", I'll shut up or leave. NO biggie.
BTW, when I almost passed out from clapping for joy, I closed my eyes, started concentrating on each breath -- started "visualizing" a serene scene in my mind. I didn't move until I felt my heartbeat slow and my breathing calm down. When I have a breathing problem, I STOP in place and refuse to move until it passes. I don't care how it looks to other people -- I'm in my own little world until I recover. Yep, I'm pretty "strange" -- I don't care much what other people think (as in their "judgements" of me). But, I guess you have already figured that out. THAT may be part of what helps me cope, too. NOT being so "tied" to "conventions". I march to the beat of my own drummer.  |
For what it's worth, I do not think you have a mild illness. In fact, based on your description , I think you have a fairly severe illness which significantly disrupts your life.
I also think that it could possibly be better managed. But, of course I do not know the full details, so can only speculate on that.
Your attitude, in my opinion, is the key to managing your life, not your illness.
why would anyone think that you are stupid, or be annoyed with your decision to be optimistic and calm about your illness, or your life? And what harm can be caused by letting people know the ways in which you have found to deal with it? so, it may possibly help them adjust better to their illness.
Like I said, people can find the way to lead a very good life with MG (or with cancer or even with ALS), this does not say anything about the severity of their illness.
MG can be anywhere from mild, hardly noticeable ocular symptoms to severe life-threatening respiratory symptoms and the entire spectrum in-between.
Just like cancer can be a localized lesion with full surgical cure or a metastatic disease, and the entire spectrum in-between.