How Does Myasthenia Gravis Intrude in Your Day?

[abaneezer]

My vocal cords are keenly affected by MG. Talking is often difficult. I’m always hoarse to some degree and often need to whisper. Mestinon helps during the first 2 hours after taking it. But should I try to produce any volume, my vocal cords will freeze for a second or two, causing me to choke. My right vocal cord is partially closed all the time and I am conscious of it all the time. My muscles weaken with use; but I have learned how to manage them and have to rest most of the day. I am very lucky in that after getting MG controlled after my initial diagnosis; I had 16 years of minor symptoms before a dramatic return which has disabled me. I subscribe to spoon theory and make sure I don’t over tax myself. That alone can be intrusive. But worrying about vocal cord paralysis is the most intrusive.

[pmdwarrior]

Some days I can only manage 1 energy event a day. So, I choose- is this the day I go to Trader Joe’s or Costco to shop? Or is it the day I go to the pool for some water movement exercise. Or can I putter in my garden and do some planting or cleanup. If I feel enough energy somedays I can do more than 1 event.  But mostly my tired legs/body will only take me traveling so far. I am not as active as I have been in the past which has been a difficult adjustment. I really have to think about energy expense and whether the activity is one I can push myself through. And I have an occasional “recliner potato” day when I just kind of crash and rest most of the day reading or watching videos.  So, yes, MG does intrude in my day.

[ronald-e-clever]

I am still working but plan on going out on disability June 1.  I start out the day by driving 75 miles to my office.  I then plan what I need to get accomplished that day since I can only do so much since I have to have the energy to drive home in the evening.  By the time I get home in the evening I am exhausted and can barely stay awake to eat dinner, I get out of breath just walking from my car into the office and stay in my office most of the day.  I work with some wonderful ladies that make sure I have all I need when they go to lunch or down to the kitchen.

On a personal level one of the activities that wears me out is taking a shower.  I am over 400lbs so that along with the MG exhausts me so I manage one maybe two complete showers per week.  I do manage a PTA bath on alternate days but luckily I have an office job and an office by myself so I hardly ever sweat. I have a good friend at work that checks me to make sure I am not letting it go too long and so far she has never had to tell me.   I have had to add more time to my morning routine since I cannot wake up and be ready in 45 mins.  I leave the house about 6:15am so I am usually up by 4:30am – 5:00am.  This has cut into my sleep time but it is necessary.  I am hoping that once I have quit working I can concentrate on my health more and drop some weight.