Did my active lifestyle cause my post Covid-19 fatigue?
I got mild symptoms of Covid-19, so why have I been too tired to ride my bike for over 4 months???
Before I start writing this blog I need to make it REALLY clear I have ABSOLUTELY no medical qualifications. I make no claims to be offering any medical advice and have not conducted any rigorous scientific research. However, what I will do is tell you what I’ve learnt from my very active and previously healthy family spending the past 4 months living with the after-effects of a “mild” dose of Coronavirus (aka Post viral fatigue). No promises, but it may just help you and your family one day.
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I first started with Coronavirus symptoms the second week of March 2020, when herd immunity was still being touted as the way forward. Within a week, all four of us (me, my husband Chris and our two boys – aged 11 and 13 at the time) came down with all of the ‘classic’ Covid-19 symptoms: fever, breathlessness, exhaustion, persistent cough and loss of smell. We had “mild” symptoms, and after a couple of weeks thought we were getting better.
However, it’s over 130 days later and Chris and I are now unable to function properly – we have gone from being fit and active individuals to being able to do the bare minimum without suffering extreme exhaustion (physically and mentally) and often have difficulty breathing. The days, weeks and months are passing us by, and we’re on a crazy rollercoaster of feeling a little bit better and then suddenly being hit again with post Covid-19 fatigue. We are a long, long way from being back to our normal levels of activity. It is very worrying.
I’m writing this blog now for several reasons:
1) When I tell someone what’s happening to us more and more people are replying “Wow! that’s happening to my friend / relative. They were really fit, active and busy too – just like you. And since having coronavirus they are completely exhausted from post-viral fatigue”
2) Readers of Cycle Sprog tend to be fit, active and busy people too, so I’ve been wondering if there’s anything from our experiences that can stop others having the same debilitating post-viral fatigue should they get corona virus
3) We’ve seen that in other parts of the world easing lockdown restrictions leads to an increase in cases of Covid-19, and people are talking of a second wave coming in the autumn
4) I finally feel able to muster the emotional and physical energy needed to write this.
Could I have stopped myself getting post viral fatigue after Covid-19?
I’ve been mulling over whether there is anything in our lifestyle that could have triggered the onset of post-viral fatigue. Of course I have no ideas what triggered it – perhaps it was just bad luck. Perhaps it’s something to do with my body, that I couldn’t have done anything about. Researchers will hopefully come up with the answers in due course. But perhaps, just perhaps, it was something I did, or didn’t do with the early weeks of having the virus. Something I could warn others of now?
I’ve spent months thinking back over what happened, and have been questioning whether my actions before, during and shortly after having Covid-19 had a detrimental impact on our long term recovery.
I’m writing this so hopefully Cycle Sprog readers can take heed, should similar befall them. I may be totally wrong, but if I’m even slightly right and can limit just one persons symptoms I’ll be happy.
We’re a fit and active family – we love riding our bikes (we run a family cycling website!) but also do all our day to day activity by foot or bike, rather than by car, so have a really good underlying level of base fitness. (This in itself is a very good thing when it comes to fighting Covid-19. I could feel the battle going on and I’m glad I was as fit as I was.)
But looking back, our lives were probably a bit too full if I’m being honest. Like so many families, our weeks were full of juggling a wide range of responsibilities and after school activities whilst we tried to pack as much as possible into every single weekend. We were on a different model of ‘rollercoaster’ then, with different expectations of the highs and lows.
Personally, I’m one of those people who always needs to be doing something – I run two businesses, do the admin for our local junior cycling club, am a campaigner for cycling and walking and had just signed up for a year-long course to help me grow Cycle Sprog into a more successful business.
When Covid-19 struck I was working flat out on a Brexit project with a contract end date of 31st March. I was just starting to train for a 3-day cycle ride at the end of August of roughly 100 miles per day.
I was the sort of person who could turn in 10 hour days in the office and then move seamlessly to being a mum, then doing some voluntary work and some exercise all whilst surviving on about 5 hours sleep!
If this kind of frantic lifestyle sounds familiar to you, then please let me be your warning!
Did I do anything wrong to end up with Post Viral Fatigue after Covid-19?
“Where did I go wrong in managing my Coronavirus recovery and could I have caused post-viral fatigue?” This is the question I continually ask myself – was there anything I did that triggered the fatigue?
I can’t be sure, but this is my conclusion after over a hundred days of contemplation:
I did too much before the coronavirus really took hold of me
My lifestyle was so hectic beforehand – I was a disaster waiting to happen!! Looking back it’s as if my body was trying to warn me. Several days before I got the full on Covid-19 symptoms I felt exhausted. I came home from work and went straight to bed. I woke up the next day feeling fine and carried on at full speed.
LESSON LEARNED #1 – Listen to your body and take plenty of time to rest if it’s trying to tell you to slow down
I did too much whilst I had the actual Covid-19 virus
Several days later I came down with all the symptoms of coronavirus. Lockdown was still a distant prospect, but we decided to take our boys out of school – against government advice at the time – as we didn’t want them to pass it on. Within a couple of days, Chris and our eldest son were also displaying mild symptoms, and a week later the youngest had some very mild symptoms too.
Over the next fortnight we were juggling learning to work from home and how to home school, which is stressful enough, all whilst being ill with Covid-19 and having to self isolate whilst the rest of the world was stockpiling toilet rolls (remember those days?!).
I kept on working flat out, earning the last money from my contract whilst Chris had to pick up all the domestic side of things. I’d never let illness slow me down before, and I certainly wasn’t going to let these mild flu-like symptoms slow me down now!
OK, so I was collapsing into bed ridiculously early some days, but other days I was feeling OK.
I had a persistent cough, but there’s a mute button on conference calls!
Yes, I’d lost my sense of smell, but hey, when you’re in a house with three males is that such a bad thing??
LESSON LEARNED #2 – Stop EVERYTHING and let yourself be properly ill with Covid-19 – even if you have mild symptoms. Respect the virus – as it certainly won’t respect you
I drank alcohol
I had only had a couple of glasses of alcohol all year, after a particularly successful Dry January. However, I really fancied a glass of wine about 2 weeks after getting my first symptoms and had a small glass whilst curled up on the sofa.
Bad move! The next day was one of the most frightening of my life. Suddenly I started to struggle to breathe. Even just sitting in a chair without moving was a battle. Chris was on the verge of taking me to the hospital for assistance when it passed. Had I not been as fit and healthy as I was I’ve no doubt I’d have ended up in the Covid-19 ward. Instead I ended up on inhalers (both blue and brown) and the struggles with my breathing commenced.
I have no proof that the alcohol caused the breathing difficulties, but I do know my difficulties breathing got a whole lot worse very suddenly within hours of drinking alcohol. I also know I won’t be drinking alcohol again for a very long time!
Chris started drinking again at the beginning of March and as with many parents, it was his way to relax post trying to home school the boys after Covid had taken a hold of the nation. As he was feeling off-colour he wasn’t drinking very much at all, but a bottle of cider or beer most nights was the norm.
Chris didn’t have such sudden breathing problems as I did, but it was becoming increasingly clear that his body was struggling to shift the mild symptoms he was experiencing. Instead of getting better as each day passed, he was getting more and more fatigued, and his breathing was slowly getting worse. We’ll never know whether the alcohol was hindering his recovery, as by the time he said “no more alcohol at all” it was too late.
Lesson Learned #3: Cut out the alcohol completely the moment you think you may have Covid-19 and only restart when you’re 100% fully fit again.
On a related note – we have never smoked. I dread to think where we’d be now if we did.
I did too much, too quickly, once the virus had passed
The inhalers made a real difference to my breathing, and it appeared we were over the worst. Hurray!!!!!
Given the key symptoms were starting to ease, we started to ramp up our physical exercise again. We established our own daily exercise and stretching routine, and went for some socially distanced walks on the fells around where we live (we’re fortunate – it’s very easy to social distance on the fells of Cumbria)
I carried on working from home, rushing to complete work before my contract ended. Chris continued to pick up all the homeschooling.
As we do everything local and never drive, I resumed my regular trips out to the local supermarket, and carrying the bags back home became the norm (plus there was no way of getting an online delivery at that time).
I really thought we were getting better, and that getting back into an active routine would speed up my recovery. I wanted to regain the lost fitness from being inactive for 3 weeks, and then enjoy some lockdown bike rides with the boys. Sadly, Coronavirus had other plans.
Advice now coming out is to take at least 10 days from finishing your Covid-19 symptoms to starting even gentle activity again. I wish I’d known that at the time. However, even if I had, would I have done little enough? I’m now learning what “gentle activity” means – it’s basically NOTHING if you’re used to doing loads.
So many of the stories I’ve heard from other people have the same theme. They were all feeling better and just did x. For x insert your choice of lockdown allowed activity – bike ride / run / jog / walk / shopping / working in essential services / working from home / Joe Wicks session.
Most people I’ve heard of having post-viral fatigue were hit with it after trying to get back to their pre-covid activities following “mild” symptoms.
Lesson Learned #4 – take it VERY easy after having Covid-19 symptoms. Don’t do anything to stress your body or raise your heart rate for a minimum of 10 days. You need to pretend you’re still ill – or possibly think of yourself as being more ill than you were with the symptoms if they were mild, as the temptation is to do too much.
I didn’t know enough about post-viral fatigue
One day in early April Chris and I were on a short walk and suddenly I got REALLY breathless. It felt like someone had just sat on my chest. We turned around and made our way home.
Cut a long story short – by the middle of the night I was getting really worried, called 111 and they immediately sent an ambulance for a suspected heart attack!
I had a barrage of tests in A&E and was proclaimed really fit and healthy, apart from some dehydration. The second doctor to see me even hinted that I was wasting their time and it was all in my head.
But I really felt as if a 30 stone man was sitting on the middle of my chest. Surely that isn’t normal??? Surely you don’t just suddenly start imagining that whilst out on a walk???
My Covid-19 swab came back negative. Not surprising as it was over 4 weeks since my first symptoms. They didn’t have the antibody test available at that time – it would have been interesting to know my levels.
I spoke to various GP’s and medical professionals who all said the same “You’ve got Post-Viral Fatigue – it’ll be at least 6 months. Take it easy”.
Time passed, and on my birthday, which is in mid-April, Chris and I went for a walk on the fell. We walked the same, shortish distance we’d been walking earlier in lockdown.
I think, looking back, this walk was, for some reason, too much for him. This was the point at which his fatigue started to really set in –ALMOST A MONTH AFTER HE’D STARTED WITH SYMPTOMS OF THE VIRUS.
From this point on he started to sleep more and more each day.
Another milestone was 28th April – the day Chris helped me carry some shopping home. It wasn’t heavy at all, but it was the first time he’d carried anything since being ill. After doing that his descent into extreme fatigue was rapid. He started sleeping 7 hours a day, whilst also sleeping all night.
My breathlessness continued and was getting increasingly exacerbated by everyday tasks. Shopping, cleaning, cooking – everything was so difficult.
What was going on? By now we should have been out enjoying the quiet roads of lockdown on our bikes. However cycling was becoming a more and more distant dream.
On 5th May a doctor called Paul Gardner published an article in the British Medical Journal, snappily entitled “For 7 weeks I have been through a roller coaster of ill health, extreme emotions, and utter exhaustion.”
It was like reading our story. It was such as relief knowing that we weren’t alone! But what really struck me were the comments left by other readers. More comments than I could possibly read by people responding to this one particular paragraph in his article:
“The illness ebbs and flows, but never goes away. Health professionals, employers, partners, and people with the disease need to know that this illness can last for weeks, and the long tail is not some “post-viral fatigue syndrome”—it is the disease. People who have a more protracted illness need help to understand and cope with the constantly shifting, bizarre symptoms, and their unpredictable course.”
To summarise, hundreds of comments all said “We’ve been saying this for years – and no-one has been listening to us”. These were comments from people who had previously been diagnosed with Post Viral Fatigue (PVF), who were then diagnosed with Post Viral Fatigue Syndrome (PVFS) and then with Chronic Fatigue Syndrome (CFS). Many had ended up with the ultimate diagnosis of Myalgic Encephalopathy (aka ME).
That’s a lot of acronyms but the commonality for all is being too tired to do everyday activities, with no idea of when it’s going to ever end, with little or no support, and no cure in sight.
Lesson Learned #5 – No-one knows what the long term side effects are of Covid-19, and there has been hardly any research done in the past into similar symptoms. The long term prognosis is scary.
6) I didn’t get practical, physical or emotional help, soon enough
Neither Chris nor I like admitting to our weaknesses, and so we were battling on through Coronavirus whilst working and homeschooling. I wanted to be one of those people I was seeing on the TV – out there helping others, so it felt wrong to be asking support from others when there were so many vulnerable people who really needed assistance.
But slowly, as the long term implications of our condition have become clearer, we’ve had no choice but to seek help. This has come in many ways, including getting my parents to help remotely with the homeschooling, asking our wonderful neighbours to help with everyday tasks, getting home deliveries from the supermarket, and paying for a cleaner and a gardener (I’m acutely aware I’m extremely lucky to be in a position to currently afford this).
I’ve also had to try and learn to accept that kids can be entertained for hours on end by electronic devices. I don’t have the energy to stop them and it’s how they can stay in touch with their friends, have fun and continue their schooling. I hope the years spent trying (and sometimes failing) to limit their time on devices and getting them outside on their bikes is in the bank, such that the months spent continually on them recently sort of balances out over the longer term.
One of the biggest changes we made was asking Kath, a friend who is a cycling and triathlete coach, to become our “recovery coach” Having someone keeping an independent watchful eye on us each week, and help us as we ride the ups and downs of the rollercoaster, has been invaluable. She’s also demonstrated her expertise in getting Chris to do as he’s told, which is no mean feat!
Lesson Learned #6 – ask for help early if you’re struggling with everyday tasks.
One of the most useful things I’ve read about post-viral fatigue following Covid-19 is a leaflet produced by the ME Association It has two key phrases which I’d like to end with.
If you are unfortunately enough to catch Covid-19 please, please, please, please remember them. I can’t make any promises, but it may just stop you getting on the rollercoaster that is post-Covid fatigue.
“The most important aspect of management of post infection fatigue involves good old fashioned convalescence. In practice, this means taking things easy, and having plenty of rest and relaxation”
And, perhaps the most important for fit and active people who get Covid-19:
“You cannot exercise your way out of post-viral fatigue”
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