Let me start by saying that I don’t have Long Covid. At least, that’s not what’s officially wrong with me. At time of writing I’ve mercifully escaped infection with COVID-19, as far as I know. Also, I’m not a doctor and I’m not medically trained. I’m an Australian librarian and a writer.
So why did I make the Guide to Long Covid site?
I made it because I’ve got Chronic Fatigue Syndrome (ME/CFS) and this illness is strikingly similar to Long Covid. In theory, they’re both “post viral syndromes” and they share a bunch of symptoms. I wanted to research and write about Long Covid because
- a. I wanted to learn more and
- b. I wanted to share what I already know about pacing, heart rate monitoring, HRV, orthostatic intolerance and the rest of it.
So here’s my story.
The Geek’s Guide To Long Covid is available as an ebook!
You’ll find a comprehensive guide to using wearables, apps and technology to cope with Long Covid. It offers detailed instructions on pacing, heart rate monitoring, HRV, POTS, deep breathing, tVNS, air purifiers, CO2 monitors and lots more.
Available from Amazon
Myalgic Encephalomyelitis or Chronic Fatigue Syndrome (ME/CFS) has no known cause, no successful treatment and no cure. It is a strange condition that can involve crippling fatigue, brain fog, pain, weakness and a swathe of other symptoms. Exercise, using your brain, or any use of energy can cause a “crash” which results in days in bed. In theory, it’s caused by inflammation in the brain, kicked off by an overactive immune system that then causes a cascade of problems throughout the body. Energy production is impaired, the mitochondria malfunction, the gut and circulatory system develop faults and basically, things can spiral downward if a person keeps using more energy than they have.
In theory I have a mild version of this. I have the fatigue and the inability to exercise, plus breathlessness and a racing heartbeat when I stand up. If I do any serious exercise, I’ll feel fine on the day but then will need to go to bed 24 hours later. Or else I’ll feel sleepy, confused and vague all day. If I’m having a bad day, even doing housework will wreck me the next day. Even now I have a great deal of uncertainty as to how much I can do without causing a crash.
I’ve had ME/CFS for almost two years now.
A bit of backstory. At the start of the pandemic in mid March 2020, I came down with a cough that wouldn’t go away. Officially it wasn’t Covid because I was checked for antibodies in 2021 and the likelihood of me getting the disease at the time was very low. I had a chest infection apparently. I also gave blood at the start of April and the next day I was tired and dizzy. I just figured I hadn’t coped well with the donation.
For the six weeks I had the cough, I was also doing a lot of exercise, mainly surfing and swimming. When lockdown happened in April 2020, beach swimming became a huge source of joy for me and I was doing it every second day. As the Autumn drew in, I swam with fish, turtles and, at one point, a sea snake. It was fantastic. Except it was getting harder and harder to breathe and keep up my pace. I became constantly tired and breathless. Instead of getting fitter, I was getting more and more exhausted. Worried, I called my doctor and he ordered tests.
Then the chest pain kicked in and I had a couple of late night hospital visits, concerned I was having a heart attack. After the second visit it emerged I had a serious iron deficiency. My blood wasn’t carrying enough oxygen and my red blood cells were misshapen and weak. Apparently iron deficiency is a common problem for women but I eat red meat and they couldn’t find any medical reason for what had happened. I still don’t know what caused it.
In May I had an iron infusion and I slowly, slowly recovered. By August I was back swimming laps in the local heated pool and walking to get my strength back. In September I did a 14km hike and at the start of October did a 1.5km beach swim.
And then the next day I could barely get out of bed. I felt just as exhausted and breathless as I had during the iron deficiency. Convinced I was having the same problem, I had more blood tests.
Only this time the results came back normal. My iron levels were fine.
This kicked off a medical odyssey of tests and scans and doctor visits. Everything came back normal. There was nothing wrong with me, officially. I was still convinced it was an iron deficiency problem since it all felt the same as 2020 but the ongoing tests were stubbornly fine.
Meanwhile, being the librarian I am, I googled. And the thing that kept ticking all the boxes was – to my horror – Chronic Fatigue Syndrome. My experience seemed very similar to what I was reading online, though it wasn’t an exact match. I didn’t want it to be true and kept hoping I’d get a weird result in a test at some point.
It’s a strange thing, hoping for some other devastating diagnosis, like cancer or a kidney problem. At least those things had distinct diagnoses and treatments. I hated the idea of being thrown onto the CFS trash pile where I had no treatment and no end to the problem.
CFS is diagnosed by excluding all other options and seeing if fatigue lasts for six months. I was finally sent off to a specialist and officially diagnosed with CFS in April 2021.
At that point, I was half resigned to it. But I also thought that I didn’t really fit the standard profile and that I was going to be fine eventually.
The specialist told me to experiment and work out how much exercise I could do without crashing, suggesting I walk 1km a few times a week to keep myself fit. Once I found my baseline, I could slowly increase my effort by 10% a week. This method is called “Graded Exercise Therapy” and it’s hugely controversial. A lot of CFS patients believe it causes harm by making things worse. But I gave it a red hot go. I walked 1km, then crashed. I walked 800m, then crashed. I tried walking very slowly but it still made me very tired. Instead of spending one day in bed it became two, then three. I felt I was getting worse.
In May, having done a great deal of reading on CFS, I decided that I just needed to rest. According to most people with CFS, resting and pacing daily activities seem to be a way to halt the disease and slowly recover some energy and function. So I reluctantly gave up doing any exercise and took to staying in bed half the day. I began doing breathing exercises and meditation, I gave up alcohol and coffee, I bought some supplements like Co-enzyme Q10 that were supposedly beneficial.
And I went to pieces a little bit.
Back in 2018 my husband and I had moved to a new town and kicked off a new and happy chapter in our lives. After years of always-on internet work, I made more time for relaxation. I took up new hobbies like watercolours and tai kwan do, got back into reading, and did a ton of swimming, walking and bike riding. We also went to the pub and restaurants a lot. 2019 was a great year. I was fantastically happy with how things were going in my life.
And then everything went totally pear shaped. Because of course it does.
“Life is what happens to you while you’re busy making other plans.”John Lennon
I’ve always been sporty. Not super athletic, of course, but still happy to exercise regularly. I like being fit. Swimming, walking and cycling have been the focus of so many recreational activities in my life – nature walks and hikes, surfing, scenic rides around wineries. Swimming is beautifully meditative and any kind of movement will lift me out of a grey mood. So exercise has been a big part of my life and it has helped shape who I am.
Being unable to exercise is devastating to me. Being unable to walk anything more than a short distance is hugely disabling. Being unable to stand or sometimes sit without tachycardia and the threat of relapse means that everyday activities like cooking, hanging out the washing or having a shower become difficult.
Since May 2021, I’ve barely left the house. I’ve been in my own personal lockdown, too scared to overdo things in case I make my illness worse. I’ve lost six kilos, most of it muscle. I’ve spent hours and days researching possible treatments and reading anecdotes of healing and loss.
CFS has made me into a disabled person. I don’t look disabled, but I’m not a healthy person. I can’t live the life I used to have. It’s gone, with only a slight hope I’ll ever be normal again.
It took me four weeks to cry after I was diagnosed. I thought I was coping mentally with things and being generally upbeat about it.
Until I went to the dentist.
I hadn’t been to the dentist for 20 years (yeah, I know, I’m a chicken) but I decided it was finally time for a check up when a newly opened surgery offered a special $99 deal. So I sat in the chair and gripped the armrests during the X-rays and scale and clean, all very brave and stoic and grown up. When it was over I promptly sat up and burst into hysterical tears. I’m sure the new patients in the waiting room had a moment of doubt when I emerged shaking and distraught to pay my bill. The receptionist didn’t bother to book a follow-up appointment. I drove home and collapsed into bed, crying my heart out, overwhelmed by the absolute grief of it all.
This thing came and took away so many things I enjoyed, leaving me dependent on my husband and at the mercy of a medical system that had no idea what to do with me. I can’t function normally, I can’t travel, I can’t really work. I can’t drink anymore, or go out dancing. I can’t go for a walk in the bush. Even shopping is tiring. All my plans for the rest of my life went out the window.
I was devastated. I still am. There was a lot of crying in the middle of the night. Marooned in insomnia, frustrated and sad, I cried my heart out in the dark.
I used to hate crying; it made me snotty and exhausted. Now I’ve embraced it. Crying calms the sympathetic nervous system and helps me to feel better so I made the decision to give in to it. My life sucked. Why not cry and express that?
In May, having done the denial bit before diagnosis, I went into bargaining. I decided I was going to be better by the end of September. And I started pondering the “if onlys”. If only I hadn’t given blood that time. If only I’d taken it a bit easier and not pushed myself when swimming. If only I’d rested more in November 2020 when I had a better chance of recovering.
I once again wished I’d got cancer instead. It’s a crazy stupid wish but I honestly would have preferred it at that point. Just a nice simple curable cancer, mind you, nothing lethal. Maybe a spot of breast cancer. I told my husband I’d gladly cut off my boobs if it meant I didn’t have to have CFS. They’re only boobs, I could do without them.
Then, watching the paralympics in July 2021, I saw a swimmer who was missing fingers. I said I’d be happy to lose a finger if I could swim again. It wouldn’t be a problem, I could just get a prosthesis.
At that moment I had a small epiphany. If I was theoretically willing to give up a finger, what would I give up in real life that could let me be more normal? I decided if I gave up exercise, just for a few months, I might have a chance at recovery. Surely that’s easier than giving up a finger?
So at that point I embraced the idea of pacing, which is only doing as much as your limited energy will allow. I established a baseline of activity that won’t cause me to be exhausted. I rested and meditated twice a day and set up strict sleep hygiene standards. I started tracking my heart rate to keep it under 95 bpm, based on research that suggests aerobic exercise is what causes crashes. I bought a Fitbit and then a Garmin smart watch so I can get more objective measures of how my body is coping each day. I did my best to accept that my life had changed and I had to just get used to it.
In September 2021 I started taking low dose Naltrexone. This drug was originally designed for addicts and alcoholics. It works by blocking the opium receptors in the brain and is normally given in 50mg doses but researchers have found it has a different effect at very low doses, like 1.5mg. It reduces inflammation in the brain and also stimulates endorphins, helping the body to rally and recover. Over six months I’ve ramped up my dose to 4.5mg. It’s not a cure but I think it has made a difference. My heart rate doesn’t spike as much when I stand. I’m less breathless and able to walk a little bit further. I feel like I have more energy.
Of course, this could just be the result of 18 months of pacing and slow recovery. I don’t know.
I didn’t get better by September 2021. I’m still not better.
The grief of what’s happened is still there. I’m still absolutely pissed off at the unfairness of it all. I still wish things were different.
I’m having a hard time dealing with the way my body has rapidly aged. My leg muscles have shrunk away so now I have sticks for thighs. My skin is hanging off my arms. The collagen seems to have disappeared and I seem to have become very wrinkly very quickly. I have more grey hair than before as well.
I hate the idea that this is it now. I’m going to look like this forever. There’s no going back to how I was, I’ve become a wrinkly, thin old lady. I hate it.
It’s an ongoing frustration that very bit of health advice I read includes the prompt to keep active and exercise. It’s like a slap in the face. I would dearly love to exercise and get my muscles back but there’s the ongoing fear that exercise will make my condition worse. I’m trying to walk a tightrope of staying vaguely healthy while not exhausting myself.
I do stretches and a few strength exercises in the morning. I bought an electric bike and take it out for rides to get out of the house. Some days I can even walk a kilometer, though I feel a bit tired the next day.
There’s always a lingering self doubt about what’s happened to me. Is it really CFS? What if it IS in my head like some people think? What if I’m just deconditioned now because I rested too much? I have no official test result to back me up, no definitive biological marker that says yes, you’re definitely sick. I’m flying blind and the doctors can’t help me.
I’m getting used to the idea that I’m not going to be well anytime soon. But I do think I have a good chance of a vaguely normal life. I’ve read of mild cases who were able to get back to hiking after a couple of years. There’s no reason to believe that can’t be me too. I live in hope that I will be able to swim along the beach this summer. Even if it’s only a few hundred metres.
I’ve ruminated a lot on grief and loss and change lately. I’ve realised I was living a fairly ossified life, one where I didn’t believe things would change for me, even as the years have passed. I’ve been doing the same work for over 20 years, living the same life with the same routines. I’d set myself up in a perfect scenario but wasn’t prepared for inevitable change and loss. I shouldn’t have been surprised that I’ve been thrown this curveball.
This is life. There’s no guarantees. Loss is inevitable. As we age, things fall apart and the centre cannot hold. We lose our health, our friends, our family. That’s not to say that it’s all bad and sad but it’s important to see that grief is always going to be a part of life.
There’s a saying that I’ve seen a lot recently, in books and films. Perhaps that’s a Baader-Meinhof effect (frequency illusion) – it applies to me so I see it everywhere now. In any case, it’s this:
We can’t change the things that happen to us. We can only change the way we react to it.
In a sea of loss and grief, this feels like a lifeline. I can only do my best and ride the waves, keep a positive outlook and adapt to what has been thrown at me.
I’m doing my best to see the bright side and I’ve come up with is this: CFS has made space in my life for worthwhile things.
Now that I can’t exercise, I have lots more time to do other things. I’ve always wanted to write a novel. So, now I’m doing it. I’ve been meaning to get back to playing the piano and get better at it. So, now I’m doing it. I was getting tired of the way that wine-o-clock drained away so much of my time. So, now that I’m not drinking, I spend that time writing or doing something useful.
Yes, I’m grasping at straws. But you gotta grab what you can.
And so I come to Long Covid. I’ve been watching this mass disabling event unfold with horror. Knowing that millions of people are living the same nightmare as I’ve just lived. Dealing with loss and grief and an establishment that can’t – or won’t – help. I’m watching it and I’m feeling for everyone who is suffering with this new, wretched disease. I’ve made the Guide To Long Covid because I wanted to share what I’ve learned. Maybe I can help someone to find way to cope or recover. I hope so.
We’re in this together. Everyone with chronic fatigue and pain issues is with you. We understand what you’re going through and we want to help.
And thankfully science is working it’s butt off to find answers for Long Covid which will help the rest of us. We live in hope.