A Day With ME/CFS Part 1
In an odd twist, the COVID-19 pandemic has been a blessing to me. I know that sounds strange, but with the advent of long COVID, there has been more research into ME/CFS due to clinical similarities.
To geek out for a minute, because yes, I sometimes read medical journals, both share such clinical findings as “redox imbalance, systemic inflammation and neuroinflammation, an impaired ability to generate adenosine triphosphate, and a general hypometabolic state” and symptoms such as “profound fatigue, postexertional malaise, unrefreshing sleep, cognitive deficits, and orthostatic intolerance.1“
Let me break that down for you in real talk.
I will describe a generic day with Myalgic Encephalomyelitis, more commonly known as Chronic Fatigue Syndrome or ME/CFS. Oh and migraine. Because why not, right?
Buckle up, kiddies. Here we go:
You wake up, but only because you have to. You went to bed on time. Early even, but it doesn’t matter. You turn off the alarm, pick up your sense of duty, and wipe away a thin sheen of shame because you need so much sleep.
You also peel your clammy PJs off, remembering half-waking in the night, drenched in sweat. Again.
It wasn’t always like this. You can dimly recall waking up and feeling ready for the day. Or was that a dream?
No matter. Today you get up and do your thing – whatever it is – because you have to. And because people don’t understand. But it’s OK. You can’t blame them. You didn’t, either, until it was your life.
As you start your day, you think back to your gym rat days and the time when you did P-90X and were in the best shape of your life. You look at your once-chiseled arms as you dress and have a moment of missing the upper body strength.
Back then, you’d start every day with a workout. A brisk walk or run followed by some weight training. Fond memories of times when your body just moved well. Working out was fun; it was therapy.
Now you drag yourself to the yoga mat and hope you have the energy to do a 30-minute flow. But, you remind yourself, be thankful.
You are one of the lucky ones. Some people with ME/CFS can’t muster the energy for yoga. Or going to the grocery story. Or walking up stairs.
You have a part-time job and can even go for a walk a couple days a week. Sure, you have to constantly adjust because a little too much physical or mental effort will cause a crash. Then, there goes a weekend down the tubes. But at least you can still function reasonably well.
Still, as you go into the first downward dog and feel that odd sensation in your muscles that you used to associate with doing heavy reps to the point of muscle failure, you can’t help but miss the strength. It feels like your muscles are starving for something.
Because they are, you remind yourself. The ATP production is janky and there just isn’t fuel in the tank.
Hmmm. Three miles must have been too far to walk yesterday. You remember when 10 miles was nothing.
You say a prayer that the Lord will help you wake up enough to read your Bible without nodding off, and you know He will make it work out. If not this morning, later on today. He’s good like that.
You close your Bible and thank God for giving you the mental energy to actually read and understand today. Not every day is like this. You start your prayers and include one you forget most of the time:
Lord please help me to remember people’s names today. And words. And my lessons.
Your brain simply isn’t what it used to be. Of course, some of the cognitive issues started after the first go-round with meningitis and the resulting chronic headache condition. Thank you, Lord, that it’s no longer chronic.
Still, as a teacher, it can be awkward to get in front of your class and forget words. It makes you look like you don’t know what you’re talking about. Worse is when you can’t get a student’s name to come to the surface. You know this child; you’ve known her for years. The name is in there somewhere. But it seems buried.
It’s laughable to think you were once recognized for your memory. It was borderline eidetic. Being able to call up scenes, snippets, the pictures of numbers – that was handy. If you wrote it down, you could remember it because you could call up the image of your writing. You could recall scenes, like having a video playback inside your head.
Now when you reach for a memory, it may or may not be there. You wonder if this is what it feels like to lose a limb. By habit, you go to put weight on it or reach to pick up a glass but there’s nothing there. You say a prayer for people who’ve lost limbs.
Then you remember your Mammaw who had severe dementia and say another prayer that the Lord will take you home before your mind goes so your kids don’t have to go through what your Mama did.