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What is one thing you have difficulty with that you took for granted before you had MG?
Brushing your teeth? Showering and general personal hygiene? Talking? Being outside because of the sun?Â
I’ve found that there are everyday tasks or activities that I used to take for granted before MG reared its head. Being outside in the sun never used to be an issue, for example. I was an outdoor lifeguard in my younger days. Now, if I’m not mindful it causes ptosis within 15 minutes.Â
Taking too hot of showers or not using my shower chair increases fatigue.Â
Talking and eating all cause mouth and throat weakness for me.Â
What are things that you took for granted before MG that you now have to be mindful of?
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8 Replies
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Simple thing like making a fist. Shampooing my hair, brushing my teeth. My hands are always weak. Especially the ring and pinky fingers in both hands.
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Mg flares are unlike exhaustionnyouve ever experienced. It will knock you on your butt. Worse than the flu so listen to your body. And do not be a hero. It could put you into a crisis and that can put your life at risk
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I miss not being tired all the time.
I miss all the energy I once had.
I miss wanting to travel. I never know how I will feel from day to day.
I miss feeling like myself. It is like some stranger has invaded my body.
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Good evening,
Talking and swallowing have been my first and biggest challenges. I did quite a lot of talking, at work, in church, on stage and whenever I would meet people. At my different jobs just before my retirement and thereafter. I did a whole bunch of talking as part of my different jobs. I spoke with my customers while I delivered mail. I gave safety talks as the Safety and Health Division. I would teach bible classes and did the narrations for church plays. After retiring, I worked at a Six Flags Parks where I drove the Trams, transporting guests to and from the parking lots, we would verbally give a spiel during the ride. I also worked at a Mental Health Center at the front desk where talking was a necessity. Now, my MG kicks in quicker than before. My voice thickens becomes garbled within minutes. I don’t do any of those activities any longer. Simply because, I don’t know exactly when the issue will kick in. Swallowing has always been difficult since 2012, which led me finally to my Neurologist, who diagnosed my Myasthenia Gravis. MG was managed until last summer when my symptoms began increasing in numbers and severity. When I get enough sleep and rest, I can do many of those things which I enjoy, but I need to keep aware of MG kicking in. I’m always trying to talk to people in moderation.
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Being spontaneous! I was always ready to go out to dinner, a show, a card game at a drop of a dime. At 78, I felt I should choose to do what makes me happy first. Housework, bills, etc could always wait a day or two. But now I have to access my stamina when I get up, see how my eyes are adjusting, shortness of breath, etc before I can plan my day. When I push my limits there is always a price to pay. The physical changes are hard, but the mental pressure on my new way of life is even harder to accept. I’m working on it day by day.
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Ability to run or leap because of slight weakness in lower body
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I wish I could eat anything again. Although I have a mild case I eat a soft diet. I have swallowing issues mostly.
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First and foremost is just to take a walk, I used to walk for miles and miles. In the woods, in the mountains, leading scouts, and now virtually only blocks at best.
I was also a distance swimmer, now a floater and paddler.
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