Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
My daughter sent me the Bloggess's "Rules for Life" whose language is too blue for me to reproduce here, although funny. Rules for Life is a title way too authoritarian for this group, where people are always telling us what to do (mostly not understanding why and how we are sick); but I thought we might add to our Links Group discussion on "tips for daily living" some Tips for Surviving MG. I thought of a couple:
1. Look for people in your life who provide humor and kindness and stick to them. Be one of those people.
2. If you are having a symptom you don't want tell your significant other about because it will be a worry, you should be worrying about it, and tell your doctor. If your doctor isn't worried, get a second opinion.
Please add to the list (see # 1.)
1. Look for people in your life who provide humor and kindness and stick to them. Be one of those people.
2. If you are having a symptom you don't want tell your significant other about because it will be a worry, you should be worrying about it, and tell your doctor. If your doctor isn't worried, get a second opinion.
Please add to the list (see # 1.)
Mary
The Serenity Prayer is something we can certainly utilize and Curt's comments about Medic Alert "do dads" were always to the point.
Since Ann hasn't chimed in, I will add a couple of hers:
6. Rest, Rest, Rest.
7. Talk to those that understand MG (us) and you won't need to drive your friends away who don't.
Others:
8. Educate an assertive recreational friend and a work friend about MG and let them run interference with the clueless.
9. Note walls and doorways in your home. They are your friends (or enemies, depending).
Be Well,
--Be grateful
--Don't set your expectations for yourself based on other ("normal") people, or based on your pre-MG self.
Thanks for starting this thread! I like the #1 rule, beginning with humor and kindness. (When I for months was physically incapable of smiling because of facial weakness, I really noticed how differently people react to me when I'm smiling vs when I'm not...and now that I can smile, I do it as much as possible.)
When we least expect it, life sets us a challenge to test our courage and willingness to change; at such a moment, there is no point in pretending that nothing has happened or in saying that we are not yet ready. The challenge will not wait. Life does not look back. A week is more than enough time for us to decide whether or not to accept our destiny.
Paulo Coelho, The Devil and Miss Prym
When someone politely says, "Let me know if there is anything I can do for you", ask for a future commitment on the spot. Would you water my plants, pick up the kids from school, walk the dog, clean the litter box, put in Mom's hearing aids, etc?
(piggy back on rule #1...be one of those people)
Love, love, love the quote Marcela7!
Larissa
"Your illness does not define you. Your strength and courage DOES!"