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...

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Lower Moments and Stress

onceinparadise
onceinparadise
How do you all deal with your lower moments and what are some of the things you use to balance stress when you cant hop on the forum and get advice? Being a young male, it's sometimes tough when this gets at it's weaker points. Any tips? Also, are there any group meetings with other MGers that you all participate in/experienced?
Steve0716
Steve0716
My family and church [which is where I work] are a great help in the low times. They take a lot of the physical burdens off me and allow me time to rest. They are also extremely supportive. From the start, I passed out the literature about MG and made them aware of what the disease is and how it acts. I've never tried to hide it, but I've also never tried to use it as an excuse to not do things I don't like. I've tried not to let MG define me as a person. I am a pastor, husband, dad, grandpa, friend, and happy man who happens to have MG. That is not to say I don't have to think about it everyday as it does affect what I am able to do, but I do want to just see it as an obstacle to work with, through, or around, not something that will stop me. I may not be very bulky or muscular, but I like to think of what I am is all backbone and gristle, so I can get through this.

Hope you do well and find some encouragement.
limpnoodle
limpnoodle
I know it's tough because diseases like this seem to strike those who are very active before it hits. The only advice I can give is to focus on the things you are still able to do and appreciate every bit of life you are still able to participate in.

Stress is a hard one, but it is not good. I try not to concentrate on the negatives, as much as humanly possible, but instead, be grateful for all the positives in my life, no matter how small.
Barbel
Barbel
When I really feel bad---I hate to say it ---but I withdraw. I sleep, and only take care of what needs to be taken care of. Thankfully, I have a supportive family. I don't want to talk to anyone; I just hide away until I feel better. If I have to work on a down day, I just do the best I can. I don't concern myself with issues that cause me stress, if it can be helped. I try to stay away from stressful people.

Then there are the times that I feel better, but I am still limited in what I can do. I realize that if I want to grocery shop that I have to ride the cart. If I want to go to other functions that require a lot of walking, I have a wheel chair.

I am not afraid to say NO. I am resting. I don't feel well. I need to save my strength. It's hard when friends quit inviting you to functions because they most usually hear NO. I do have a couple of friends who understand and keep in touch.

I am thankful for the people in my life who give me support.

I like to watch comedy, not action or dramatic shows.

I have found things to enjoy, even with my limitations.

If I have something that I want to do, I have to rest up for it. I can not do much thru the week, because I work Monday-Friday.

Take mestinon so it peaks when you need it most (if you are taking mestinon).

Best Wishes.