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.
4 thoughts on “ME/CFS and Long COVID or How I Learned to Stop Worrying and Love the Pandemic”
Wow! That was so insightful and encouraging. In pushing through every day, even in my “new normal” of this past year and a half, I forget that all these symptoms are “normal.” Not that I’ve actually been diagnosed yet because I’m still waiting for the referral to the rheumatologist to go through (since a year ago January!) …except I don’t have insurance anymore since November. I don’t suffer from as many headaches as you do, but I did last night and the day before. 3 this week is a lot for me. (I pray for you!!) And my joints don’t work – especially in my wrists and hands which makes typing hard and writing so painful – that is when they aren’t numb. All that to say, thank you. Your post just made me breathe a sigh of relief knowing that my desperate need for rest this weekend is normal and okay after the way I’ve been pushing through moving, ordering the house, teaching finances and writing blogs and a novel. = 0 I’m with you, sister!! Also, proclaiming healing every day because Jesus shed his blood for us!
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Oh my goodness, so sorry Laura! I also get numbness in my hands, especially at night. It wakes me up sometimes. It really is a challenge, isn’t it? Especially when we look “normal” (whatever that means). I’m glad you told me all this so I can know how to pray for you more and so we can share this journey together!
It’s funny but right after I wrote this, another virus took me out for a few days so I’m just now getting another chance to get online again. Ha! Sorry for the late reply!
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Yes, at night or writing in my journal is the worst. I can type for awhile even though I miss keys, but writing, doing my hair, getting dressed, cooking! I sleep on an ice pack at night so my neck doesn’t get too hot. That helps with the aching arms and hand numbness. We also just got an adjustable bed which helps too!
I am fortunate in that I don’t really get sick from anything else. Other than a few days after Christmas with some virus, I’ve been well. My immune system is way over active – and the supplements I take seem to help.
I pray for you too! Proclaiming healing, living in the moment, and taking from this whatever He wants to show me. In the end, may we glorify him!
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