I wrote the following essay over a period of months, abandoning the project several times. How could I share such hopeless desperation with my readers? Many look to me for inspiration and hope. How could I possibly let them down by sharing the frightening new realities of my life after contracting COVID without first having some hope or solutions to offer?
But I’ve never been one to shy away from the tough stuff, or to hide the realities of life with multiple chronic illnesses. Why should I? We all know firsthand how terrible things can get and relying on false positivity has never done any of us any good.
I may not have solid solutions to offer at this moment, but I’m hoping that will change over the coming weeks. For now, I’m breaking a silence that has been deafening to me in its loneliness. I can only hope that it helps lift the burden of others who have also been trying to cope with a drastically different new normal thanks to Coronavirus and chronic illness.
My So Called Post-COVID Life
The symptoms began 4 days before my 48th birthday, in March. My throat was sore and I began to cough. I had a runny nose. I got fatigued easily and soon a headache set in and only seemed to grow in intensity, as did my body aches. Like so many, at first, I thought it was a reaction to pollen, arriving with the volatile weather and fragile greens announcing winter’s end. Then came the nausea and diarrhea, the shortness of breath and a downturn in my body temperature. Though none of these things are outside the scope of an allergic reaction, my allergy meds and mast cell stabilizers were doing nothing to help. While many of these things can happen during flares, that persistent cough and the growing number and severity of my asthma attacks told me there was more to the story. Somehow I had caught the virus before it was even supposed to be in my area. Coronavirus, COVID-19.
The truth is it had been here for some time, knocking around from worker to worker, cashier to customer, lover to beloved. No need for the federal government to recognize something that hasn’t been confirmed by a test. Ignore the coming epidemic and there’s no need to take action. The emergency rooms fill up just the same.
I wondered if I would make it to see 49, let alone 48.
My eldest sister died at 49 of congestive heart failure, beating our mother to the grave by only a few years. I figure this is the number to beat, 49 and if I manage to survive it, I’ll do my best to get past my mother’s competitive 64. I approach it like a starving hyena approaches lunching with lions; equal parts fear and courage. If I don’t fear death, what do I have left to fear? The worst already happened years ago.
Two nights separate me from my birthday and I wake up coughing and sputtering. I cannot get in a breath. My husband runs for my inhaler, which I have foolishly abandoned in the living room. I feel the cold plastic of it as my husband forces it into my hand. I cough and sputter a few more times, afraid I can’t inhale the mist of corticosteriods that will save me.
The first dose coats the top of my mouth and I slam my fist down into my leg in frustration. I try again, emptying my wheezing lungs as best as I can and breathing in as the medicine is released from the canister. I force myself to breathe, fighting my diaphragm for the control I so desperately need.
My lungs sluggishly respond and I am able to fully draw in the second dose, but the wheezing does not fully subside and I go for a third, feeling lightheaded and crashing back to the bed. My husband measures off 50mg of liquid benadryl, certain I am having an allergic reaction. I feel myself grow heavy, sink back to oblivion.
It’s saturday morning and there’s no way to contact my doctor. If I call in, they will tell me to go to the emergency room. I imagine it filled with bodies on gurneys interlaced with doctors struggling to stay on their feet. No. I tell myself. I’ve made it through worse without ever seeing an emergency room. I will make it through this, too.
I ask my husband to find the guaifenesin in the hall closet, an old friend I keep stocked at all times. COVID or no, congestion is congestion and I am a seasoned general in this war. Knowing how to treat my own symptoms keeps me out of the ER, away from the doctors who trigger my PTSD.
For years, they told me nothing was wrong, labeling my hard to diagnose symptoms as somatic or me as a drug seeker, even though I was allergic to every pain reliever they would offer. They didn’t have the first clue about the pain I’d lived with the whole of my life, or that pain itself could never be the driving force which brought me to a place where I felt as comfortable as the Elephant Man at a circus.
Having made it to Monday, I called my GP, a kind man fascinated by my diseases and determined to learn from the only other doctors in the region who dedicate their time to patients on the spectrum of collagen disorders. They set up a telehealth visit and my doctor called me thirty minutes later. He agreed my symptoms could be COVID and he worried with my asthma and allergies, I’d end up in an emergency without some sort of intervention. So early in the pandemic, they still had no idea how to treat coronavirus patients. He prescribed me with a heavy dose of prednisone and told me to keep taking the guaifenesin.
Still, every time I prepare to sleep, I wonder if I’ll ever wake up again, if I’ll suffocate in my sleep or wake gasping and coughing.
Two weeks went by and while I was certain the prednisone had saved me, I wasn’t getting better, either. At a month, the cough and congestion seemed better so I withdrew the guaifenesin, only to have to go back on it after two days and four more asthma attacks.
Then the migraine came. I haven’t suffered from intractable migraine for years, but it didn’t take long to realize this one wasn’t going anywhere. It wreaked havoc on my intracranial hypertension, making standing an even greater challenge. Auras clouded and crowded my visual field, growing ever more ominous with any exposure to light.
Any attempt to get out of bed sent me to the bathroom, retching and heaving. My neurological system seemed to be on fire: I started having seizures. My shaking returned. My body tortured me noon and night with sharp shooting pains, patches of burning skin, ice piercing my feet and legs. My stomach cramped and burned and my digestive system slowed. My spine ached and my muscles cramped and spasmed.
I began to fear I’d never get out of my bed again. Here I was, preaching to the masses on my blog; never give up! Keep looking for those solutions. You can live a comfortable life with chronic illness. I felt like a fool and a phoney, years of work having been so thoroughly defeated by a virus. Over my lifetime, I’ve battled dozens of viruses and infections, quite possibly hundreds. Was this the one that was going to finally take me down?
Five months later, I am still taking guaifenesin twice a day. Otherwise, my breathing is labored and my asthma rages out of control. My rescue inhaler has become an everyday feature I use 2 to 3 times a day to keep the wheezing at bay. In addition to this, I take my usual summertime doses of H1’s and mast cell mediators: 20mg of cetirizine twice a day. Maximum doses of quercetin, Montelukast, Vitamin C and fluticasone. I live next to my air purifier. Still, I struggle.
The intractable migraine eventually let up, yet I can’t stand or even sit upright for longer than 30 minutes without reawakening it and spending several days working to get it back under control. Resting and icing my head eats up my days.
Once again, I am a prisoner of my own bed. Sometimes I wonder if I shouldn’t withdraw the supplements that provide me energy to eliminate the constant itch of wanting to do and be… something. Anything. But doing so could be dangerous. If anything, it’s helping to keep the neuroinflammation from becoming completely overwhelming.
Sometimes it feels like anxiety over energy and I realize my autonomic system, despite showing no signs of POTS, is still being affected to some degree. I wonder if possible lung damage and neuroinflammation will kill me yet. Sometimes I feel it would be a mercy to finally end this lifelong prison of pain. I can’t imagine how I’ll possibly sustain it even though I know I’ve been through worse for far longer.
I’m taking everything I can take. I add NAC Max to my already extensive regimen, hoping it will help mitigate more of the inflammation. Slowly, my body heals. Months ago, I dug out my bed desk. Months ago, we bought reclining pillows to help me sit up on the slight incline I can tolerate. Months ago, I went back to using my bluelight filters near max and wearing my sunglasses when it still wasn’t enough.
As my muscles atrophy, the dislocations and cramping becomes an every hour feature. I pop my elbows back in more times a day than there are hours. My ankle and knees pop with every movement and I often feel a grinding, ripping sensation as I put my joints back into place. They ache and pain pulses outward from my joints like a beacon.
I do myofascial therapy 4 times a week and begin the process of slowly rebuilding my strength, exercising in my bed. As ever, I’m determined not to let it break me, while simultaneously chiding myself for not practicing what I preach all along: Keep moving. Do what you can to stay strong. No matter how little it is, it still helps. Care for yourself first, so you can be there for others when they really need you.
To try to stay motivated and keep my head in the game, I reopen my health and wellness group. I make up units with all the information I’ve learned and provided over the years. I add what I’ve left out or learned since, post it in pretty memes and infographics.
I try to keep moving, keep massaging, keep knocking out a few wall squats and push-ups during my precious 45 minutes. I do pelvic tilts and leg lifts. Kegels and upper body resistance exercises. I cook sitting in a chair and trying not to burn my arms on the hot skillet. I occasionally drag the vacuum cleaner or a rag around, unwilling to let my home fall apart completely.
I constantly tip myself back toward migraine and head pain, nausea and the confusion of brain fog as I learn the limitations of my new normal. I go back to bed, start all over again.
One day, my cat starts to behave oddly and I watch his appetite dwindle to nothing. I call the vet, haul him in, trying to hide my exhaustion as the vet tech comes to take him from my vehicle. In the world of pandemics, we get drive up service. It suits me well, yet I hate knowing my baby is being poked and prodded all alone. He has an infection of unknown origin. The only thing that confirms this is his fever, his lack of interest in food, his lethargy. They give me antibiotics and an anti-inflammatory along with my sick cat.
The night after the vet, I have migraine and a dystonic seizure. It rips inhuman sounds from my body as I shake and flail, an arm punching, head rocking back and forth, tears streaming down my cheeks as my husband watches, phone in hand.
“Do you want to go to the ER?” he can’t seem to resist asking, even though he knows the answer.
My digestive system shuts down and pain blossoms from the site of my diverticulum. Two days later, I try to do a salt water cleanse, end up puking salt water into the wastebasket as I sit on the toilet. I take more and more Vitamin C, hoping I’ll avoid the cost of a CT scan and more antibiotics. Somehow it manages to work. I promise to behave myself with my diet, but I know it’s a lie. Food is the only comfort I’m left with these days. So what if I pay the price through recurrent symptoms and weight gain? I’m not doing anything else.
This is my life. To varying degrees, it has always been my life, sinking and rising with the currents of chronic illness and an immune system more interested in attacking itself than any disease. I am its puppet. Like all masters, it assets its power when it feels me working my way too far from its grasp.
I avoid my doctors, knowing there’s little they can do for me. Why pay more money for more tests that never lead to a solution? My faith in medicine is at an all-time low. I am convinced they have nothing I need and the ever growing mountain of medical bills seems such a waste. So many tests. So few solutions.
It’s always the same and I’m done playing musical chairs in waiting rooms all around the UC medical campus.
Despite it all, I keep writing, keep posting, keep working, all from my bed. People thank me for my research, my product reviews, my instruction on safe movement with hypermobility while what’s left of me quietly digests the knowledge that all those years of hard work could be undone by a microscopic organism. Most of the time I feel too defeated to bother screaming into the void.
I wonder if I’m doing the wrong thing. If all I’m providing is false hope and bandaids. I wonder how to explain to my readers that I’ve failed them and myself; that it is possible to work your way out of the pits of severe ME/CFS, feel thoroughly confident that the days of living in a darkened room flat on your back are over, only to have it all stolen away in an instant by some virus.
Yet, I know if we live on what if’s and could be’s we’re all done for. After all, EDS is a degenerative disease and we all know we’re fighting for a better life while we have one to live. There is no cure for this disease. No medications. The object has never been to overcome the disease, for that’s not a possibility. The object is to make our lives and bodies as comfortable as we may so that we can still enjoy life. So that we may participate in the things which bring us meaning while we still can.
Crawling a little further out of this pit week by week, my mental health hanging on by a thread, I spend every day combing through the data collected on the pandemic, the new cases, the deaths, the victories and I imagine the missing columns that represent people like myself, those still hanging on after months, still wondering if this virus will yet kill me.
Had this illness struck me prior to finding everything I have to pull my own health out of the trash, would I have survived? If I hadn’t already been on all the mast cell stabilizers, the antioxidants, the many nutrients, would I still be here to fight my way back up and out yet again? I feel certain the answer is “no.”
I am one of the vulnerable they’ve warned won’t survive. By all rights, I should be counted among the losses. Yet, I’m still here and hope remains. I still have contributions to make, no matter how much harder it is to carry them out.
I am being tempered, once again, by my own reality, and I can only hope that it will strengthen my mettle. I am reminded we only lose when we give up trying to find the things that will help make our lives livable. We only lose when the heart stops and the body cools.
I am here and so I fight. I adjust my supplements and medications. I do the massage therapy, the physical therapy, return to the research, because that is what helps me not only survive, but begin to thrive again. Each week there are improvements; pain ebbs and life flows.
I’m not a big believer in fate and I don’t believe in a god with plans. But I know so long as I’m here, it’s my job to keep fighting, to keep finding the things that will help us survive the worst life has to offer so that we may be here to once again find life’s best. And as always, it’s my job to pass this knowledge on to whomever may benefit.
On August 16th, after a good week in which I tried to do some basic cooking and housekeeping, I developed another intractable migraine, my body aches increased and my joints became a lot less stable, contributing yet more pain on top of the parasthesias and muscle spasms that plagued me. Somehow I was getting worse, not better.
When I was still struggling with it as August became September, I broke down and called my doctors. I have an in person appointment with my GP this coming Friday and last Thursday I did a telehealth appointment with my head pain specialist.
My head pain specialist decided the best course of action was to do more steroids. He reasoned that it might not only take care of the neurological symptoms, but also help with my MCAS, in case it was contributing. This time I’m on a 12 day taper. I worry about how many steroids I’ve had this year and the effects it may have on my collagen, but desperate enough to risk it.
Five days after I started my taper, I am finally headache free. I have slightly more energy and a lot less pain. I still have a lot of snow in my vision, but the constant onslaught of auras have gradually fizzled out and I’m being very cautiously optimistic. I suspect I’m no where near the end of this fight, that the steroids will only be a temporary stop gap measure, but I’m doing my best to enjoy the reprieve, take full advantage of its benefits, and finally put out this post.