invisible illness

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

~ Heather Davis ~ 2 Comments

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

~ 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

The Long Haul

~ Heather Davis ~ 9 Comments

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.

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.