Weakness – it was never even in my vocabulary until after I was diagnosed with myasthenia. Maybe that’s one of the reasons it took 26 long years for me to be diagnosed. We don’t like to be known as weak. Weak tends to mean deficient in some way. “He has a weak chin; she has a weak character; watch out, those floorboards are weak.” And as a woman, I was not about to take the phrase “weak as a woman” to heart. Instead, I described what was happening to my body as being tired. Things felt heavier, even clothes felt heavy on my body. My legs felt like rubber bands, my arms felt as if I was holding a 10-pound sack of flour.
Even more confusing about what my body was going through was the fact that this heaviness would come and go. Mornings were almost always my best time of day. I learned to tackle all my big jobs early in the day. Some nights, I could barely lift the serving dishes to set the table for dinner and often times I would have to rest my chin on my fist with my elbow propped against the table to hold my head up while I tried to chew.
These symptoms and more, such as double vision, occasional choking, multiple severe muscle cramps, funny nasal speech, and the inability to fully open my eyes came and went throughout the years with baffling irregularity. Usually by the time I got in to see my doctor, the symptoms had decreased or were gone altogether.
In the year before I was finally diagnosed with MG, I was teaching aerobic dancing at my local church. I would dance three times a week or more to learn the routines so I could then teach my once-a-week classes. But I noticed something unusual, my heart rate wouldn’t recover as fast as my students even though I was exercising more often. My heart should have been able to recover faster, not feel like it was beating out of my chest fifteen minutes after class was over. I was also having problems walking. A simple hill on the farm where we were living caused my legs to feel wobbly and made me breathe as though I had just run a 5K.
But the final thing that led me to seek out medical help was when I had been to the local county fair with my children. Pushing a stroller and trying to keep up with my older girls’ quick strides was certainly tiring. At the end of our day, I stopped by the Lerch’s donut stand to buy a dozen donuts to take home. Back then they sold their delicious treats for just $1 a dozen. I pulled a dollar bill from my wallet and held it in my hand while I waited in line. When it was my turn to order and pay for the donuts, I couldn’t open my hand to release the money. The gentleman behind the counter said, “Lady, I’ve heard of being tight fisted, but this is ridiculous.” At the time we both laughed as he pulled the money from my curled fist which I still couldn’t open, but inside my head alarm bells were going off. “What the heck was wrong with me? This is NOT normal.”
I made an appointment with my primary care doctor who quickly sent me to see a specialist. A dear Rheumatologist gave me the type of push/pull strength workout that is so standard now in my twice-yearly visits to my neurologist. But then he did something more. He made me walk out to the staircase in the hall and asked me to start walking up the steps. “Okay,” I thought, “this is unusual.” I made it up the first flight of steps just fine. I kept a normal pace and was able to climb with ease. As I looked back at him, he only nodded and told me to keep going. The next flight got a little harder. I found that I had to hold the handrail and used it to help propel me along. By the third flight of steps, I was using both hands on the rail to pull my body up each step. At the fourth flight, I was having significant trouble raising my leg to place it on the step. I was reduced to crawling up this flight on my hands and knees taking a break between each step. The doctor who had followed me up the stairs, came and helped me to my feet and pronounced, “I’d like to admit you to the hospital for further testing.”
The fact that I had never said the word weakness was one in which Dr. Bowling found impressive. During my hospital stay after my very positive EMG and extremely positive Tensilon test, I was diagnosed with myasthenia gravis. He asked me to appear in front of a classroom of medical students and told me ahead of time to tell the students what I had told him during our first appointment and to continue to not use the word “weakness”. After the Q and A session by the students, he informed them about my diagnosis. The students all clapped when his presentation was over and were amazed that he had found the cause of my neuromuscular problem when it was such a rare disease. That was my first hint that MG was not very common and was a disease characterized by extreme weakness.
Since the time of my diagnosis, I have learned to assess my level of MG severity by the level of my weakness. And yes, “weakness” is now part of my everyday vocabulary.
Sometimes weakness can come on without much warning. I’ll occasionally wake up unable to hold myself erect in a chair or lift my foot to walk. On those days, I consume Mestinon (pyridostigmine bromide) for breakfast. I have found that this type of unexplained weakness usually precedes some kind of viral or bacterial infection. And within a day I usually develop all the symptoms of that infection.
Other times, the sneaky weakness can come after a day or two of feeling great and trying to accomplish what I can while I feel strong. I think, “Wow, this is great, I have some energy to clean out the garage, or paint that room, or do some gardening or well, you fill in the blank.” Unfortunately, even after all these years, I find it hard to regulate my high energy days when I’m feeling strong to avoid having it followed by days of lingering weakness.
I have come to make a reluctant peace with the word weakness. I don’t have to let it define me or make me feel deficient as a person in some way. Most days I’ve learned to manage my muscle weakness. I have projects to do early in the day when my strength is at its best and I have other activities to do when my legs get wobbly, or my hands no longer cooperate. I’ve learned the value of a good nap – especially when I need to do a late in the day or evening activity.
And when I awake to a bad day where my weakness is very pronounced, I’ve learned to just go with it and spend the day in bed catching up on my binge watching or just listening to good music. Most of all through this journey of weakness I have finally come to realize that its ok. Dishes and laundry will get done another day. That looming deadline can be pushed back, and life will go on if the house isn’t dusted or vacuumed on schedule.
Author’s note: While your weakness may fluctuate from day to day or hour to hour, any prolonged weakness where you are having trouble breathing or choking on water needs immediate medical attention. Call your doctor or 911 if you are experiencing this type of weakness.