Mestinon doesn’t taste half bad anyway – Walter B
“I’ve just had the joy of being in remission for a year. My morning dose of sandpaper lips disappeared, my two end fingers on my right hand could type again, my vision improved, my morning awakening was not accompanied by a dose of Mestinon, my watch didn’t beep every five hours for the next dose, and people stopped saying, “Begyapardon” every time I said something. I still took Prednisone and Imuran, but my breakfast wasn’t all pills. I missed the Mestinon so much I even took to baked beans because they looked like it! As the ABC’s resident cook says: “Bliss!!”
But the other day it came back! It began with dry lips, which I tried to ignore. Then I found it a bit hard to talk, which I remedied by remaining silent. My two fingers stopped working properly so I just used them for decoration and routine tasks like shaking hands and waving to people. Finally, when I found that my teeth bounced off hard food like apples and raw carrots, I called it quits and reached for the Mestinon.
More bliss! I was almost back to normal. Sure I sounded like a newly arrived European migrant, but after all, I came to this country from Europe when I was seven, so I developed what you might call a “delayed accent”. But my chewing went back to normal, and my fingers worked again, and Mestinon doesn’t taste half bad anyway, even though it does give me cramps which have my poor wife waking from a deep sleep to get me a hot cloth to put on them. And I feel well even though my vision plays tricks on me, like occasionally seeing two wives when I’m sure I only married one. Still, maybe she has a twin sister stashed away somewhere, only it must be a close relationship because they both do the same things at the same time!
I’-v-e f-o-u-n-d t-h-a-t s-p-e-a-k-i-n-g m-o-r-e s-l-o-w-l-y stops people from saying “begyapardon?”. But I find that the hardest of all things to do. Now my friends just look at me as if I’ve lost my marbles, while people who don’t know me think I’m retarded. Still, you’ve got to look on the bright side. They no longer think I’m drunk!
I suppose the message in all this is that if you go into remission, enjoy the time it gives you. It may be years, it may be months and it may only be for a couple of weeks, but enjoy it while it’s there, and don’t contemplate jumping off a building when it’s gone. Look forward to the next time it comes. It might never happen, but you’ve seen it happen once, and there’s no reason why it can’t happen again. If you’ve never been in remission, it’s something to look forward to.
Most of have realised that there is a definite psychological component to this odd disease, and that you feel physically better if you’re feeling happy and positive. Many of us , for instance, react negatively, mentally, to weeks of grey days. I know I do, and I’m sure that my Myasthenia reacts negatively to my negative reaction (now there’s a mouthful). If you have similar experiences, recognise them for what they are, and keep calm and positive. It’ll go when the sun comes out, and it always comes out!
Anyway, believe it or not, my fingers tell me it’s time for my next delicious Mestinon. Yum!”