I'm a Rag Doll
Rag dolls are made out of cloth and slightly stuffed. When you set one down, they just kind of crumple into a heap. They cannot be posed into any form. There is no true structure in which to support their bodies. This is how I feel at times having myasthenia gravis (MG)!
For instance, I take the generic form of Mestinon, every 2 hours while I'm awake. About 45 minutes before my next dose, I can feel my muscles just letting go. Around the time I take my next dose, I literally crumble into a heap for about a half hour. This is a daily thing I experience every 2 hours.
Whether I am sitting at home in a chair or riding in a car, I crumble! Even if I packed myself with pillows to help add more support. (By the way riding in the car is one of the hardest things to do!)
Full-body weakness
I remember years before I was diagnosed with MG, I was at a neurologist appointment waiting for the doctor to come into the room. I could physically no longer sit in the chair. My core muscles, arms, legs, and my head and neck were weak and tired. The feeling just hit out of the blue.
Not wanting to fall out of the chair, I slid onto the floor. I leaned partially on the chair and the wall behind me for support. This is how the neurologist found me when he came into the room. I stayed that way for about 30 minutes of the 45 minute appointment. I was barely able to lift my head, open my eyes, or talk.
The last 15 minutes of my appointment I was able to get back up into the chair. I felt fully rested and was able to continue on with my day as normal. Checking for MG was never even mentioned at the time. Although I did find out that I had hyperthyroidism.
Difficulty riding in cars
As I mentioned earlier, riding in a car is one of the hardest things for me to do since my diagnosis of seronegative myasthenia gravis and the use of Mestinon.
I don't care how good the car's suspension, whether riding or driving it feels like I'm doing constant low-impact aerobics the entire time. Not to mention the visual stimulation - for me, that's a lot of stress on my body. I get the same rag doll experience just from traveling.
Challenges at work
In one of my previous articles, I wrote that I was so excited because I was hired to be a cashier. Everything was going great for about 2 months! I was only working part time about 24 hours a week, not including the hour round-trip the 3 days I work. However, I was starting to notice that after working my 3 days, it was taking 4 days to recuperate.
I got to work one morning and I crumbled ... standing right there behind my cash register. I'm so thankful I didn't fall, I just simply just sat down. It was like trapping a rag doll on the floor, my head slumped forward and just barely leaning against the backside of my cash register, I was unable to move for about 10 minutes.
It did not take long for me to realize that I could no longer work a regular type of job. For the first time leaving employment because of MG, I have no regrets! Even if I truly enjoyed the job.
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