What does your day-to-day feel like with Myasthenia gravis?

[John]

Wake up feeling very tired. Eyes feel stuck together. Take all my pills. Try to be positive but recently find myself just shutting my eyes around 11am and back to bed for another few hours sleep. Up, get my legs moving, wash the car, do some gardening, anything to get me moving and my legs just feel weak. Last week was ok, not so tired but this week by early pm time, eyes start closing again. Not able to get to sleep until around 1.30 am in the morning. As many of you know, no two days appear to be exactly the same.

I tried an experiment by cutting down on my steroids and Mycophenolate and felt I was not so tired, but my Neurologist not exactly pleased to hear this and told me to go back to my correct(in her opinion) regime. Instead of 2000 Cellcept a day, I halved this amount and I don’t know if it was mind over matter, but I did not feel so tired, and I don’t want to ignore her advice, but I have to get to the bottom of this acute tiredness as its rendering me useless. My protein levels are way down plus I’m a bit anaemic according to my Doctor so started taking in powder form, amino acid booster and I think this is helping.

Oh, and been with a personal trainer for the last two months doing weights and stuff and this has helped, but she feels strongly that diet has a lot to do with everything, but I like my food and don’t want to cut out everything I’m fond of as bad enough dealing with MG.

And that’s mostly my day-to-day over the last several months. Good news is that I can now control my double vision, and it’s hardly noticeable when driving which was quite scary a few months ago. Onwards….and best to you all.

[Tina]

literally every day is different. But it’s like going to a restaurant—you know what’s on the menu, of course you’re not going to have everything, but you will have some items, some will be bad, some mediocre, some days a symptom or two will seem nonexistent, and it will be a more pleasurable experience. But you know everyday you’re eating at that MG restaurant, like Groundhog Day. For years I said that was one of my favorite movies and now I don’t think I could watch it. I read everyone’s posts and see what’s coming on the menu, and I’m rapidly trying to squeeze in all the things on my bucket list as fast as I can, before I won’t have the energy or the health to do them. So my typical day? I wake with my right eye too dry to open, despite the tear duct plugs I’ve been getting for 10 years that used to work, and the new set last week. I use the new gel drops so I can see without stumbling, although I stay in bed as long as I can until I’m sure nothing’s cramping, my brain’s awake and I am ready psychologically to face whatever’s going to come. That usually takes 1-2 hours until I absolutely have to get up as it’s meds time. So I’ve read all my email, texts, spiritual thoughts, surfed, and played a few games by them. That’s my “me time” when I most feel like “me” before the inevitable stumbling around happens when I get up. Then it’s water, meds, coffee, paperwork. Then it’s lunchtime, if I remember to eat, or feel like eating. When I inevitably get nauseous, I force myself to eat something and fix my 40 oz tumbler that will last me the rest of the day, which forces me to drink without having to argue with myself over the trouble of fixing another 8 oz glass and cleaning up the spill. Then I feel like the old me usually, from about 2-4pm, so I typically can attack my “to do”list I’ve mentally prepared the night before and revisited in the morning—like making my supplies of coffee and baked goods I can have ready to go in the mornings, sewing, cleaning and prepping vinyls and cds to sell online, cleaning my space, personal grooming, and ordering supplies. During this time I’m trying to ignore Alexa’s reminder of meds and vitamins at 2:30pm, and negotiate with myself usually until 3-3:30pm, arguing that the vitamins make me nauseous whether I’ve eaten or not. I remind myself that my nails break, hair falls out, I get muscle cramps, constipation and urinary problems that make me get up 2-3 times per night if I don’t take the cranberry tabs, so I might as well take all of the vitamins since I’m taking the cranberry. Then it’s time to see if I’m able to check the mail or walk around outside. If I forget, then I make myself do something in the house that makes me walk around more than usual. Then it’s dinner—Meals on Wheels, which I’m eternally grateful for—sometime between 5-8:30pm, depending on when I remember. Then it’s time for 8:30 meds, which is the third round of cajoling for the day, as everything gets stuck in my throat, or feels that way, and I hate taking pills anyway. As a sidebar, my new dr sent me to a GI who did barium tests, and yes, there is something wrong with my throat—I’m getting my esophagus stretched next month—thank you very much, in spite of all of my previous drs ignoring my expressions. So back to my typical day, I then either fall asleep in my recliner trying to watch 1 serial program that day to keep up, besides the news, after which I try to get to bed without falling. It’s not exciting to others I’m sure, but if everything goes well, I’ve crossed everything off my list, took all my pills, avoided spills or falls, kept up with a tv show and made it into bed by 10:30pm. That never happens, but if most of it goes ok, I’m happy. I’d list what happens if I have a dr appt or have to go visit the grandkids, but those are extreme outliers and are they’re not a typical day.