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

A Day With ME/CFS Part 2

If you are just joining, start with Part 1 of what it’s like to live with ME/CFS.

Orthostatic Intolerance

You stand up from the table to put your Bible away (if you remember to put it away, that is), but you stand slowly. No dizziness right now. That’s good. Thankfully, this symptom is nothing new. You’ve dealt with it your whole life – it’s just a little worse now.

What you hate is when a wave of dizziness hits for no reason while you’re on the stairs.

The Other Things

You’ve started talking about your ME journey a little bit because you realize so many people who have it are not as fortunate as you. Some are housebound. Others are bedridden.

Driving to work, you see a homeless person asleep in a bundle of blankets under a bridge and wonder if he suffers with ME/CFS.

Still, you hesitate to talk much because of the stigma. So many people think it’s all in your head. You were once one of them.

But time after time, you pushed through and pushed through only to end up with bronchitis or meningitis or some other major issue as your body simply couldn’t muster the energy to both push through the fatigue and produce an appropriate immune response.

Some days you drive to work but have to take a 20-minute nap in the car before going in. Or you have to pull over and take a 20-minute nap so you don’t fall asleep at the wheel.

You realize you are nearing a crash. Thankfully, it’s Thursday and the weekend is coming, although you’d really like to do something with your weekend other than recover. Like clean. Or even something fun.

The body aches are annoying. Your thinking is sluggish and you feel generally unwell – like the beginnings of a bad cold or a mild flu.

But you’re thankful it’s not a bad day.

Even on a not-so-bad day, it feels like the air is made of molasses. During class, you slur a few words and tell your students to get out their cameras. You meant to say laptops. Ah, aphasia! So a migraine plans to join the party. At least there’s medicine for that.

Photo by meo on Pexels.com

Your students help you sort your words out. Thankfully, they are sweet girls and you already told them not to worry if this happens. More than likely, it’s a migraine prodrome and not a stroke. You rely on the weird manic energy you’ve been able to concoct in public for the last several years to get through classes. And you don’t sit still for long so you don’t fall asleep.

Your gut is a mess, but you decide not to get into that. It’s just unpleasant to talk about.

On the drive home, your body hurts worse and you look forward to bed. Now that you’ve learned to balance things a little better, gotten strict with your sleep schedule, and accepted that you can’t exercise like you used to, bed is no longer the only thing you look forward to.

The heartrate alarm on your watch goes off because the organ decided to jump up over 100 beats a minute even though you’re just driving. So weird. You shrug.

Before bed, you thank God for His mercy. You realize that ME/CFS has made you rely more and more on Him, and so it’s good. It’s also given you compassion for others, because not everyone who looks healthy, is.

Even so, you have days of sadness. You miss being able to get up super-early, working out, and being productive. It’s hard to feel like crud most of the time. You don’t really get excited about much these days except Eternity and God. You keenly feel the truth that “the outer self is wasting away but the inner self is being renewed day by day.”

You try to decide if your achiness is enough to warrant taking an OTC medicine or if you can sleep reasonably without it. It’s best not to since you need to save things like that for migraines, so you skip it.

You skipped dinner because of the gut thing. That’s OK. There are people all over the world who skip dinner because they don’t have any. You thank God that you have the option and pray for those who don’t.

As you turn out the lights, your heart does a gymnastics routine. It feels like a guy with a peg leg trying to run through a yard riddled with mole hills – but in your chest.

You pray – in part to keep your mind focused on the Lord and in part to suppress your body’s adrenaline response to the weird heart stuff. As you do, you feel comforted that you have the Lord. He is with you.

You pray for people who don’t know Him and have the peace of trusting in His plans. You imagine ME/CFS without God. If you didn’t trust Him, didn’t trust His purposes for allowing this in your life, there would be no point in going on. Without the certainty of His goodness, you would have given up long ago.

You thank Him for being a God who is not a stranger to suffering, and you surrender to His plan.

You can rest in knowing He is good, even when life is not.

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

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

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

The Long Haul

For we do not want you to be unaware, brothers, of the affliction we experienced in Asia. For we were so utterly burdened beyond our strength that we despaired of life itself. Indeed, we felt that we had received the sentence of death. But that was to make us rely not on ourselves but on God who raises the dead.

2 Corinthians 1:8-9

I thought I’d steal a few precious minutes to give an update from my little corner of the South. A quick note to my Facebook followers before I dive in: Even if this article posts to Facebook, I am taking a break from Zuckerberg’s social media platforms for a time. So if you have a comment to share, please share it here on WordPress… or better yet, consider helping support this writing ministry by visiting my Patreon page! Become a Patron!

I’ll be offering extras for my Patreon supporters, building in more as I go, but this blog will remain free (and sparse so long as our family’s needs require me to work outside the home!)

It’s been an interesting year. I’ve been working part-time at my kids’ school teaching cell phone photography to middle school students – a feat roughly equivalent to swallowing live eels while guiding two dogs, eighteen kittens, and a chicken safely through New York City using a homemade map and the Force.

And while it must be admitted that middle schoolers spend more energy attempting to circumnavigate the school’s network restrictions than taking photos with their phones, it can still be fun to see the photos they do take and hear their thoughts.

Then a week before Christmas break, I came down with the Bane of 2020 – COVID 19. My symptoms were mild and I recovered at home over the break. But a couple weeks after I began feeling better, the body aches and fatigue came crashing back. And again a couple weeks after that… and again… and again…

So here I am in mid-March wrestling with unpleasant facts: Not only am I blessed with the invisible illness of ME/CFS, I also get a free – and equally invisible – membership to the COVID Long Haulers’ Club.

Not fun. Incredibly humbling. But nonetheless, I am blessed.

I admit, this blessing doesn’t really feel like one. If given a menu of blessings, it isn’t one I would have selected. And it doesn’t go particularly well with the 70% pay reduction our family tasted in 2020, nor with the 2-car, 4-driver dynamic we’ve been noshing on since last fall, nor with any of the banquet of bland fiscal fare we’ve been sampling in the last 18 or so months. But it’s a blessing still.

I don’t know when, I don’t know why, and I absolutely don’t know how, but I do know the Lord will use this newest struggle in some way for the comfort of His people. Perhaps in some way I will be able to speak to those who share in this weird and unpredictable cycle of flu-like aching and exhaustion and point them to the comfort I have in Christ.

Or maybe the Lord simply wants to make His power abundantly known in my profound weakness.

I have no idea what to expect. All I know is that I committed myself years ago to walk the narrow, difficult path that leads to life. Whether this current dark valley is a brief foray of reduced visibility or just the beginnings of another steep descent into utter blackness, I have no way of knowing. The road curves just ahead and I have only enough Light for the path beneath my feet.

Still, no matter where this Way leads and no matter how short or long the journey, I know I never walk alone. The Lord Yeshua is with me. Regardless of the personal cost, with Him as my Guide I am in it for the long haul.

Recent Absence and God’s Unexpected Provision

Look at the birds of the air: they neither sow nor reap nor gather into barns, and yet your heavenly Father feeds them. Are you not of more value than they?

Matthew 6:26

I know I haven’t been around much, and it’s looking like that trend may continue.

Oh, I’ll pop in here and there; maybe read a few posts, maybe write one on occasion. But I’ve kind of given up regular posting for a time.

For one, there is SO MUCH NOISE in the world right now. My little voice simply isn’t loud enough to be heard over it all. And to be honest, there are tons of people in my analog life who need time – and tons of people in the digital realm with a wider impact for the Lord than this mama.

If I can be candid…? I’ve been working a part-time job plus another small writing contract, and those added to ME/CFS and regular life (not to mention all the appointments which are now crammed into summer thanks to Covid-Madness) have left me with little extra time.

That extra time belongs to my family and analog friends. For now, at least. Who knows what may happen later? But as I type this, my girls are about to enter their junior and senior years of high school and my son is looking for his first apartment.

This is a season – one that is passing all too quickly. So I will be around the blogosphere; just not necessarily weekly.

But before I go, I need to boast a little about my God.

Last Monday while driving to a dentist appointment, I was praying to the Lord for provision. My current part-time job didn’t quite cover tuition and yet my attempts to work full time at this place brought about extra physical issues.

As I was asking the Lord to provide what I could not see coming – and mean literally as the words were coming out of my face – I hit something in the dentist’s parking lot and blew a tire.

I laughed and said out loud, “No matter. I trust my God to meet our needs anyway!”

The very next day, I went into a meeting with the school’s headmaster. To my great surprise, he had a part-time role there at the school for me.

In fact, it had been his impression that a former employee had already set things up with me (nope!), and among other roles, a schedule had already been made with my name as teacher for a 7th period photography class!

Anyway, it’s a long story how that came to be, but suffice to say working at the girls’ school is very much ideal. For one thing, it almost totally covers tuition. Also when sports practices and so on begin, I’ll already be on site.

I’ve subbed there, so I know and love the people, too. And I get a captive audience of young people to talk to about the Lord. It’s a win-win!

Now to figure out how to translate my experience as a semi-professional-but-mostly-amateur photographer into a classroom teaching experience…

I’d love it if you find a second to pray for me as I tackle this new adventure!

O LORD, you are my God; I will exalt you; I will praise your name, for you have done wonderful things, plans formed of old, faithful and sure.

Isaiah 25:1

M.E. and Me

Come and hear, all you who fear God, 
and I will tell what he has done for my soul. 
I cried to him with my mouth, 
and high praise was on my tongue. 
If I had cherished iniquity in my heart, 
the Lord would not have listened. 
But truly God has listened; 
he has attended to the voice of my prayer.
(Psalm 66:16-19)

Ever get what you asked for but it looked so different from what you imagined that it took you some time to realize it? This is one of my answered prayers, albeit an answer I’ve tried to deny…

I’m starting to accumulate quite a number of letters beside my name. Heather Davis; IBS, ME/CFS… It’s too bad they are all diagnoses instead of degrees. C’est la vie!

The last one, ME/CFS, has actually been on my chart for several years now. It stands for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. It’s also known as Systemic Exercise Intolerance Disease or Post-Viral Fatigue Syndrome, but most people just call it Chronic Fatigue Syndrome. CFS for short.

It’s a diagnosis I refused to submit to for years, mainly because it always seemed like a description rather than a diagnosis. I suppose that’s why some doctors are switching to the other, more medical-sounding names. But of course, once a thing has been around in the public consciousness for a time, it’s difficult to change it.

For me, it is a humbling diagnosis. However, now that my migraines have been under control for several months, it’s become extremely clear there’s another issue behind the insane bouts of fatigue that have plagued me for much of my adulthood.

A primary reason I’ve been refusing to accept this diagnosis is… well, if I’m honest, it’s pride. CFS hurts my pride.

You see, a hallmark of CFS is what the docs call Post-Exertional Malaise, which basically means if I work out too hard or even overextend what little grey matter migraine has left to me, I crash.

And for this one-time fitness nut, that’s a bit hard to swallow.

Before I had children, I was a gym rat. When children came, I found other ways to work out at home with freeweights, video workouts, you name it. In my thirties, I hit a personal fitness best after going through the P90-X program.

Ever since migraines came in and stole the body I worked so hard to attain, I’ve planned on regaining it; especially after a friend celebrated her 50th by sporting a STUNNING physique! I wanted to rise to the challenge she offered.

A few years ago, I set my mind to accomplish this. I’m in my forties, so I stared slow. After walking for a bit, maybe a few days of light weights, I decided the time had come to ramp things up. In the past, increased intensity brought increased energy.

Not anymore. Instead, I couldn’t wake up the next day. I crashed, not for a day but more like a week.

Thinking it was a fluke, I tried again. And again. And a sad number of “agains” until I had to realize something wasn’t right.

It just isn’t normal to feel like you have a case of the flu that comes and goes, getting worse every time you exercise vigorously! But it is normal for CFS. Hurrah.

So, friends, there’s a bit of an update. It keeps me from ever catching up, but I’m trying to learn to live within new limits. Unfortunately for me, I’m a slow learner AND a terrible patient (according to my husband – pray for him!).

And I can’t complain. Honestly. After all, this is an answer to my own prayer.

Admittedly, God’s answer isn’t playing out as I imagined, but years ago I did ask Him to strip away every single thing that distracted me from Him.

Apparently being uber-fit was one of those things.

So today, I give thanks to God who truly does answer all our prayers and give us everything we need. Which is Himself, by the way. He is all I really need. And anything I need to endure to get closer to Him is worth it.

Even pain. Even CFS.

Whom have I in heaven but you? 
And there is nothing on earth that I desire 
besides you. 
My flesh and my heart may fail, 
but God is the strength of my heart 
and my portion forever.
(Psalms 73:25-26)