Fatigue Was One of the First ‘Tells’ of My Primary Progressive MS
In poker, a tell refers to a change in an opponent’s behavior or demeanor that may offer clues about the cards they’re holding. This could be a facial movement, an unusual breathing rhythm, an unconscious shift in body position, or a strange monetary bet. Recognizing a player’s tells may help you predict their next moves.
As someone with primary progressive multiple sclerosis, my opponent in the game of life is my body. I now struggle with actions I never thought about before and abilities I always considered a given. I’m learning my new body language, including the “tells” of MS. One of my first tells, or symptoms, was fatigue.
Ready for breakfast? Let’s have scrambled eggs
Before my diagnosis in March 2021, I always made breakfast for my wife and myself while she got ready for work.
One day in December 2020, I decided to make simple scrambled eggs and toast for the two of us while my wife made the coffee. I’d cooked eggs thousands of times. They take two to three minutes, tops.
I started by taking the eggs, butter, and cheese out of the refrigerator and bringing them to the stove. We have a somewhat small kitchen, so it isn’t a long walk. I bent down, opened a cabinet, and turned the Lazy Susan to find a pan, which I then put on the stove. I took out a bowl from a cabinet above the counter and put it next to the stove. Almost ready. I retrieved the salt from the Lazy Susan and the pepper sitting on the counter, and I had all my ingredients.
As I cracked eggs into the mixing bowl next to the stove, standing became a noticeable issue for me. But I continued, pouring the scrambled eggs and cheese into the warm, buttery pan and starting to fry. Stir, watch, flip, watch, wait. I walked back to the fridge, took out the bread, and brought it back to the stove. At that point, my steps were deliberate, as I felt slow and shaky. Standing and moving around were becoming more difficult.
I put slices of bread into the toaster. Soon, it was time to plate. I walked over to the silverware drawer, which is next to the fridge, to grab two forks. By that point I was completely exhausted and had to sit down at the table. My wife brought over the finished eggs, toast, and coffee. I was wiped out!
We started to eat, but I was shocked to realize that I couldn’t lift my arm to feed myself. I tried to hold my fork, but it slipped out of my hand. I was so tired I couldn’t even keep my wife company while she ate. I had to lie down. I hobbled to bed and didn’t reemerge for eight hours. The fatigue was overwhelming.
Mention fatigue to people without multiple sclerosis and they nod politely. They feel fatigue, too. But it’s different with MS. For us, it’s not tired muscles and exhaustion after sleeping poorly or working too hard. MS fatigue is very hard to explain. I can rest all night (I can’t call it sleep, because I don’t really sleep) and still wake up completely drained and weary.
That December morning was the start of the three months I lost. During that period, all I did was rest and visit the occasional doctor. That’s all I could do as my body’s major tells became increasingly apparent.
Fatigue affected my love for cooking because I couldn’t stand for long enough to prep or cook a meal. My wife doesn’t cook, so for a time, I had to settle for yelling instructions to her from our bedroom. (Thankfully, we live in a ranch-style home, so everything is on the same floor.)
After I was diagnosed with PPMS and received my first round of Ocrevus (ocrelizumab) treatment, the fatigue became more manageable. I still have limitations, but I can function.
Now that I know my tells, how do I play my hand? So the game begins.
Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to multiple sclerosis.