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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?
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.
Taking too hot of showers or not using my shower chair increases fatigue.
Talking and eating all cause mouth and throat weakness for me.
What are things that you took for granted before MG that you now have to be mindful of?
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42 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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My hands are also weak. I had to stop sculpting as a result.
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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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Michael, you are SO right. My helper came today to do some things for me, like drive me to places I need to go. I can’t drive anymore. So, I rode in the car for 10 minutes, walked 50 feet into the store. Shopped for 20 minutes. She loaded the groceries into the car and drove me home. By the time I got back into my apartment building I was too wasted to even walk to my apartment.
The thing is this. I was diagnosed 10+ years ago and have been pretty much able to do almost anything within reason. Not anymore. Welcome to the club Boyo!!!!
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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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This is such a great reminder and I’m glad you added it – still doing the things we love but in moderation.
I’m glad you find ways to still be involved in the things that bring you joy.
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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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I have bulbar issues and find I miss certain foods. Like popcorn. And steak. I can only eat steak on really good days, and even then it’s limited, like not being able to eat a full steak in one sitting.
Chewing gum is another thing I’ve had to give up.
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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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Hey! I was a distance swimmer as well. The mile was my event. I miss it!
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I am limited in the number of things I can do, how long I can do them, and how much strength it takes. Plus, I don’t go anywhere because I’m immunocompromised. I used to play bridge twice a week. I feel that I’ve lost my independence. I recently got a 13 lb. walker which I can lift into my car so my husband doesn’t have to drive me everywhere. Also got a cortisone knee injection to improve my mobility.
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Vision!
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Swallowing.
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Just walking up a flight of stairs without having to stop and catch my breath 2 or 3 times. Really needing those 3 grab bars in the shower. Being able to get enough sun to maintain my normal color as a Native American.
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EVERYTHING is difficult since MG became a constant companion…it feels as though my blood has lead weights running through it and I can barely open a package of sealed cheese!
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Walking. I have severe pain in my thighs when I try to walk. I take 10 mg of prednisone’s daily. I use a walker, but legs still have pain. Please help I’m 75 years old and have always had great up entail about ten years ago with MG
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I took for granted every condition that MG gave me, everyone!
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I always thought I would be able to just stand up and walk. Now I need a lift chair or help getting out of a chair and a walker or wheel chair. Other things have been a problem over the last 45 years with mg but this affects me the worst.
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I took for granted, in a major way, that I could be somewhat abusive with my body and things always ‘evened out” in a few days. I would work 50-60 hrs a week and know that I’d catch up on sleep on the weekend. Or I would push myself to exhaustion on certain days, knowing I had extra time to sleep that night or the next day off. Now, my body is very unforgiving and delivers messages very quickly if I’m ‘abusive” in any way. I’m no longer a workaholic.
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For me riding my motorcycle and playing golf. Did this every weekend
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After my crisis and diagnoses in 2023 I’ve had to learn to walk again but the last few months my walking has worsen instead of better. I went from a walker to a cane to no cane for a month now a cane again. So walking and the fatigue is what’s bothersome.
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I took my vision for granted.people take a lot of things god gave us for granted until they are gone.i can’t read much anymore or drive.i loved going shopping with my wife but can’t do that anymore.but still thankful because I could be worse.im seronegative and there isn’t much meds for it right now.
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Hey there! I’m reaching out to see if you are interested in participating in a short volunteer community spotlight. MyastheniaGravisNews.com is looking for individuals to share a personal story (350–500 words) for our June Myasthenia Gravis Community Spotlight. You can write about any topic you’d like, just needs to be your original work and not published anywhere else.
The initiative of the spotlight is to highlight various voices and stories within the MG community.
Along with your story, we’d need three images to go with it (plus captions), and if there are any people in the photos, you’ll just need to mention who they are by first and last name. We also ask for one photo to be used as your cover image.
If you’re interested, just let me know! We’d need to receive everything within the next two weeks.
If it’s not your thing or the timing’s not right, no worries! I appreciate you taking a moment to consider it
Jodi, Team Member
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Muscle weakness and incoordination. Buttoning a shirt or jacket is such a chore. My hands just do not work right!
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Me too!
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I am seronegative with eye, bulbar, hand symptoms and fatigue primarily. When I retired I wanted to expand my sewing and explore all kinds of textile arts. It was an interest I had growing up but went into a professional field instead. That interest was on hold until retirement. I no longer have good hand strength and have had to purchase electronic cutters and other tools to make it creating easier. I pace myself and create only when I am fresh. But the one thing I did not count on was the loss of eye focus. I now have prism glasses to help but usually I can only go for a little while before I have to take a break. It affects my ability to design on the computer, to do close work, to cut small shapes, etc. So frustrating!!
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New myasthenia drug just got approved by J and J. My daughter in law developed it and she reports it works for up to 20 months. Maybe some people here would benefit. I told her she’s likely the only one who knows someone with mG.
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Drinking water from a water bottle. I have to be careful of water leaking from my mouth. My penmanship has become pretty messy also. My fingers are weak and I can’t control the pen as well as I used to.
Swallowing food is more difficult. I have to be careful of biting my lower lip.
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