When Is It Too Much?
Some mornings I wake up and I know right from the start ... today I just need to rest. Now mind you, I do have to take Mestinon every 2 hours while I'm awake. Sometimes I can skip a dose. But most days it's every 2 hours on the hour. I need to have that first dose by 6:30 in the morning or my whole day is pretty much shot, even if I have to go right back to sleep until my 8:30 AM dose.
A normal day living with MG
That's funny by itself - is there a normal day? For me, the only thing normal anymore since being diagnosed with MG is that I have to take Mestinon, Prednisone, and CellCept, along with all my other medications for my other health conditions.
I recently just had 3 really good days. I was able to get up and be on my feet to work 8 hours each day. Come the 4th day, I was weak and fatigued. I had had absolutely no control over my bladder whatsoever.
I finally had to just give in and rest and nap the remainder of the day. Then for a couple of days, I had to take it pretty easy because of the weakness and fatigue. That Mestinon just wasn't keeping up, even at 60 milligrams every 2 hours.
Keeping up the fight
I'm still a little leery of keeping up this pace. I've only been able to be up and about like this for about 4 months now. I started Mestinon in October of 2020, then went into an exacerbation in January of 2021. That's when I started the Cellcept and Prednisone.
After that I've been fighting, and fighting hard, to get back to a semi-normal lifestyle. Nothing fancy, just something where I don't have to just sit or lay around all day. Every day brings its new challenges, I am very aware of this!
The fighting isn't just physical. There is the mental and emotional side, too. I have to keep them all in balance and some days that's a real struggle
What are my limits?
There are times that I just don't have the physical strength. My muscles give out way too early. This could be from something simple, like trying to eat or trying to do the dishes. I've had days where it's taken me all day long just to get the dishes done even though there are just the 2 of us here and it's not that many dishes. However, there are other days that I can get quite a lot done. I still haven't got used to where those limits are.
It's still hard for me to figure out how I can go from having total ability down to nothing in the blink of an eye. And yes, that is literally a blink of an eye! I hung up 2 sets of curtains today. It took about 20 minutes. That is taken all of my energy, I even needed to have a nap.
For me there's something about working with my arms over my head that just takes everything from me. I know I have the ability to do things, but sometimes I just can't! The limits for me change every day.
Do you think there is enough awareness of myasthenia gravis?