chronic illness

ME/CFS and Long COVID or How I Learned to Stop Worrying and Love the Pandemic

~ Heather Davis ~ 4 Comments

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:

Profound Fatigue

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.

Postexertional Malaise

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.

Cognitive Deficits

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.

To be continued…

1PNAS article

When Life Is Not a Box of Chocolates: A Migraine Story

~ Heather Davis ~ 20 Comments

Blessed be the God and Father of our Lord Jesus Christ, the Father of mercies and God of all comfort, who comforts us in all our affliction, so that we may be able to comfort those who are in any affliction, with the comfort with which we ourselves are comforted by God.
(2 Corinthians 1:3-4)

Once again, it’s confession time here on RTR… It has been some time since I’ve written a migraine post – in part because I have been struggling through a period of loathing migraine.

In some seasons, I embrace this part of my life as a gift – a useful pruning, a thorn in my flesh to keep me from becoming arrogant. A tool in the hands of the Potter as He shapes me.

In other seasons… well, let’s just say I can be a vine who talks back, clutching the discarded branches in resentful hands and questioning the Vinedresser’s skillful trimming. Such is the heart prone to wander…

There were a few weeks in which the severity (if not the frequency) was somewhat reduced. Yet one of the most vexing things about dealing with a chronic “invisible” illness is the residual symptoms. Even on days where the headache is mild, there is an ever-present fatigue. Some days it, like the headache, is pretty ignorable. Other days, I can barely function.

Last night, a mild migraine-like headache decided to roar into full throttle around 2 am. Because I am limited in the types of medication I can take, I had hoped to sleep it off but ended up fumbling for one medication around 2:15 and searching for another an hour later.

The crummy thing about migraine is the confusion which hallmarks each attack. I do not always know when the line between “ignore” and “take medicine” has been crossed. And this bleeds over into all sorts of other areas – like my hip problem which I ignored for over a decade before it, too, kept me awake nights.

But I am not here to complain. I’m really not. Today, after a pretty rough night and cancellations of highly-anticipated activities, I have been able to recover. In the past two days, I’ve slept a ridiculous amount even with last night’s interruption. And now after a nap and on the hangover (or postdrome) side of my latest migraine adventure, I feel wrung out and limp.

It is easy to feel useless when dealing with any chronic disease. It is so simple to look at all the great and wonderful things others do with their lives – homeschool moms who balance educating their kids with a career, ladies my age who have opened a business of their own, published authors, successful women. Supermoms who can raise their kids with one hand and serve at church while working full-time with the other.

It can be easy to compare…and to despair.

Another temptation is to watch my man come home exhausted after another 80 or more hour work week and feel it is my fault. If I could only bring home an income. If I could write a book worth publishing or if I had just finished college, maybe he wouldn’t feel such pressure to provide for us. For me.

But even in the aftermath of a pretty nasty neurological storm, I am thankful for my God. I am reminded my value is not in any worldly success – not even in what I do for the Lord. My value is in Him. 

He is my reward and my impetus for continuing. He and He alone comforts me – but He does not comfort me so I can feel cherished and complacent in my war against a stupid and frustrating illness.

No, He comforts me so I can comfort others.

So today, child of God, if there is any reason you feel despondent, alone, useless, or afraid, know you are not alone. Even if you do not know God, even if you have rejected His Son, Yeshua, or even mocked the very idea of His existence, there is hope.

No matter what, you are still not alone, and your rejection of Him does not guarantee His rejection of you. In God’s bewildering grace, there is always a chance for repentance. There is always a chance to turn to Him.

And He longs for you to come to Him. If you will surrender to Him, He will comfort you. And He will bring purpose to your affliction and give you an eternal hope so you may endure this life even if it grows more unendurable by the day.

Even still, I do not worship Him today because of the comfort He gives nor the hope I have, but because He is worthy. Even when I have nothing of worth to offer Him.