Years ago while undiagnosed, I was desperately looking for ways to help me cope. My muscles were so tired, weak, and hurt so bad at times that I could not sleep. If I did manage to fall asleep, there was no real resting.
Because the doctors and neurologists could not figure out my diagnosis at that time, there were no medications. Oh, some tried giving prescriptions of Neurontin, Celebrex, along with different types of muscle relaxers. None were helping at all. Some seemed to make things worse. After finally receiving a diagnosis of myasthenia gravis, now I know why!
I couldn't take my symptoms
I could no longer take it! I could not walk, see, talk, chew, and swallow food. The muscle spasms, fasciculations, and the breathing problems were 24/7, Oh, my! Just trying to feed myself was horrible.
I remember taking an elastic hair tie and wrapping it around my hand, just to be able to hold a spoon, until my husband took a spoon and bent the handle around so I could hold it better. A few times he did have to feed me.
Out of desperation, I took one of my bed pillows and the only one my husband had (he was at work.) While lying on my side, I wrapped my arms around his pillow and put mine between my knees and ankles. I wanted to feel safe and cuddled.
I laid there about an hour or so and realized I did not hurt as bad. So, me being me, I rolled up a blanket and tucked it behind my back down the length of my body. Then put back the other 2 pillows the way they were before the blanket. I fell fast asleep for hours and woke up refreshed!
The true test
That night at bedtime was the true test of the pillows. I had gathered other bed pillows that we had. I kept the blanket at my back, and I did give my husband's pillow back to him for the night!
This time, I placed pillows down the front of me also. I tucked them in all around me as tightly as I could. I slept very well all night long and I barely hurt at all. My muscle spasms and fasciculations were very minimal for the first time in months.
I continued to do this when I went to bed. Sometimes exchanging where the blanket and the pillows were placed and mixing up the placement of the ones at my feet and legs. Once in a while I would sleep on my back and do a totally different arrangement, using rolled towels at times instead of pillows and blankets.
What I learned
Not only did this help me when my muscles were fatigued, the rolled-up blankets and towels were firmer and more supportive than the pillows.
To me, the pillow packing felt like being in the old feather bed when I was a kid! Cuddly, safe, and it let my fatigued muscles rest.
Have you made any MG-friendly adaptations to your home?