The Unusual Night with Myasthenia Gravis
Last updated: February 2023
It's nothing new for me to go to bed around 8:30 PM. I'm not usually tired at that time, the problem is I no longer have any core body strength to keep myself sitting in an upright position - that includes leaning back in the recliner. I tend to fall over to one side or the other.
So rather than wearing myself out because of myasthenia gravis (MG), I just go to bed and lay down, taking the tablet with me to play a few games. Normally, 8:30 PM is also the time I take my last dose of Mestinon for the day. My prescribed dosage is every 2 to 3 hours while awake. Although some nights I need a dose or 2 throughout the night.
The fatigue was so bad
Last night around 7:30 PM, I could no longer sit up because the fatigue was so bad. It worse than normal and I was so cold that I couldn't stand it any longer. I did have a busy day - my husband Jeff and I had painted a room and it took us about 2 hours. It wasn't hard work, but we did work pretty steadily.
I left my husband to watch TV. It was so cold, I kept on my warm bathrobe and proceeded to snuggle under the blankets in bed. Between the fatigue and the cold, I couldn't even play games on the tablet. I did, however, get my CPAP mask on (I also have sleep apnea) along with my sleep mask to help block out light from my eyes. I fell fast asleep very quickly.
My breathing was getting worse
Jeff came up to bed around 8:45 PM. I woke up. Mumbling, I asked him what time it was. All of my muscles felt like I had been lifting weights. So, I told him I thought I needed my last dose of Mestinon, even though I had been asleep. He handed me my bottle and proceeded to get into bed. Then I realized I couldn't move! My breathing became breathy as I was asking for help taking my dose.
My husband came over to my side of the bed, picked my head up off of the pillow, and threw the pillow to the side. Then he began to slowly wedge his body under me until I was in a reclined position. I was so weak I could not pick my chin off of my chest.
Despite that, between the 2 of us, I got the Mestinon down. I was so glad I wasn't having trouble swallowing! Very gently laying me back down, Jeff proceeded to prop me up a little bit with some pillows all around. Then he was able to lay back down.
I needed more Mestinon doses
With MG, being overly warm is not our friend! Jeff asked me if I was running a fever because I felt so warm. To me, it was just a comfy warm. I felt like I had finally warmed up. But nope ... I was way overheated. Between slightly overdoing work for the day, being a little overheated, and needing a Mestinon, I was a mess!
The night finished out with me needing 2 more doses of Mestinon - 1 at 10:30 PM and another at 12:30 AM. I napped in between doses. I waited for the severely overworked muscle fatigue and the feeling like my body weighed 10,000 pounds to finally subside.
This was not the first time I experienced this, but it was the worst! I am very thankful that my breathing and my swallowing were not involved.
My most frustrating MG symptom is _____.