Today I officially declare myself free from Long Covid
After 16 long months I am today declaring myself free from Long Covid.
I said some time ago, that if I could get through 2 months symptom-free and do 3 days of back to back hard exercise, then that was it. I would declare myself cured.
Some things are different though, even now, and maybe it will always be this way. For example, I still occasionally get the phantom smell and now happily sleep for about 9 hrs every night instead of my previous usual of 7 hours.
I can certainly live with both of those things (‘symptoms’ if you must). After all, neither are debilitating in any way.
Also, I’m fed up of talking about it. Explaining it and even hearing the words.
However, for those who don’t know about my long and rather irritating battle with this thing that has been labelled “LONG COVID,” here’s my story from contracting Covid-19 right up to today.
But first. Spoilers alert:
This is not my usual kind of blog. There is only one picture.
There is a list of potentially useful links at the the end for anyone who may be suffering from Long Covid.
Covid-19 - 2 weeks of grim:
When I first contracted Covid-19 back in April 2020 (see blogs How did I get here? & I don’t want to go on the cart) I never had a cough, I never had a temperature and I certainly never lost my sense of smell.
I was however, quite ill. Mrs P would say “very ill.” I remember feeling awful, but to this day, I cannot put an order to the events of that 2 week period.
I passed out a number of times. I had the most horrendous headaches which were accompanied by the oddest feeling in my head. Like a woolly ping pong ball sized area about 1cm in from the bridge of my nose that was filled with something unpleasant. Not fog, as some describe it, but something denser and more forbidding.
It felt like my head wanted to be sick.
Additionally my heart did weird things. It felt like it was very unhappy. Which is ok if you are talking about the emotional heart. This was more like the unhappy old car that complains, and splutters along before finally seizing up forever at the side of some back road.
I vividly remember one specific worrying moment, lying in bed one night, when my heart started doing really odd things and I thought, “This isn’t right. In fact this feels really bad. I shall wake Mrs P and ask her to call an ambulance.” Only I couldn’t summon the energy to move. I really did think that I might not wake up in the morning, so again I tried to summon the energy to speak to Mrs P. I still couldn’t do it. In my head, I went through such mundane things as life insurance, the bills etc. to make sure Mrs P would be okay if I did fail to see the dawn (how terribly dramatic). Eventually I must’ve fallen asleep and, as I’m sure you have gathered, did in fact live to see another day.
I ended up in hospital twice, once taken by ambulance, but was fortunately, on both occasions allowed to return home the same day.
For about 2 weeks I felt utterly terrible as I sat on the sofa staring at the TV, but taking little in.
After 2 weeks though, I felt ok..
Well enough in fact to get back on my bike. I even did a 40 and a 60 mile bike ride.
Long Covid - The start of the symptoms
But then I started to feel ill again. I was tested for Covid-19 once more, but the results came back negative.
I had a whole raft of symptoms over the following 16 months. Sometimes all at the same time, sometimes only one or two from the list. This is a précis of that list. It is, unfortunately, not exhaustive:
I couldn’t concentrate and when I forced myself to, it gave me an awful, weird headache
Mrs P described the headaches as Kryptonite headaches, as she said they had a similar effect on me that kryptonite has on Superman. Unable to concentrate, unable to function, almost unable to move.
I would very suddenly and without warning become so tired that I just wanted to immediately lie down on the floor and sleep. I did however discover that if I ignored this awful, all encompassing feeling and carried on doing what I was doing, even if it felt like the hardest thing in the world, it went away after about 2 rather grim minutes.
I couldn’t sleep. I would wake in the early hours. Very fidgety. Not wanting to wake Mrs P, I would go downstairs and watch TV for a couple of hours. I did watch some drivel. I didn’t even recognise this as a symptom until it just very suddenly went away in January this year.
My resting heart rate (normally around 49-52 bpm) would drop to just 40-43 beats per minute one night, and the next be up at 65-67.
l once, with no warning whatsoever, nearly passed out whilst cycling. Within 30 seconds however, I felt fine again. For those who are horrified that I would consider cycling when this might happen I should like to point out that this had never happened before. This was more than 12 months after I first contracted COVID-19 and I had been feeling well for some days.
I could exercise, but it made my head feel sick and gave me a headache.
I was snappy and irritable with the saintly Mrs P
I began to smell an unpleasant smell that wasn’t there. A phantom smell. Like stale cigarette smoke, but more chemical. It made me strangely anxious. This was often triggered by wearing a mask. As a result I now never wear a mask over both my nose and mouth. This helps. And I never wear a mask unless I legally have to.
I became weirdly tearful
Mrs P would say that I was just not the same person.
Long Covid - The symptoms go on and on, and on…
This went on and on. I would have a couple of days and even a couple of weeks when I felt fine, but then I would just start feeling terrible again. Pick a symptom. Any symptom. One or many would return. For days. Sometimes even for weeks.
I got so fed up of feeling ill that I began to treat it as normal and carried on doing what I normally do regardless. Counterintuitively, if I was feeling ill either when, or before I exercised I found that continuing with that specific exercise only very rarely made me feel worse. Sometimes it made me feel better.
As I said, I was, after 6 months utterly fed up of feeling ill, so I contacted my local doctor and requested some standard blood tests, just to rule out any underlying issues that might have been going on. I felt that if I could get tested and if all the tests came back negative then I could at least accept that it was just this Long Covid thing and get on with it.
The process of getting tests was however unnecessarily difficult. I spoke to a dismissive, unsympathetic, unhelpful doctor on the phone. Who clearly just wanted to deal with me in any way possible that didn’t require my actual attendance at the surgery. Desperate in fact to just get me off the phone.
The tests did suggest that I may be pre-diabetic. The lovely diabetes nurse (also a telephone call) thought that unlikely. Further tests, some months later, confirmed that I wasn’t.
Unlikely to receive any help from my own doctor it was clear that recovery was going to be up to me.
During this whole time Mrs P encouraged me to keep a daily diary of symptoms (she had been doing it for me during the first 2 weeks I was ill). This daily ball-ache of a chore became an invaluable document. By looking back through the diary it was possible to see that I was (from about month 6 or 7) very, very slowly improving.
Longer periods of felling ok. Able to concentrate for longer. Less regular feelings of utter exhaustion. Less weird headaches. Less swings in my heart rate.
By June of 2021, fourteen months after contracting COVID-19, I had started to manage up to 16 days with no symptoms (baring the phantom smell) and the days that I did have symptoms would last for only 2-5 days.
I was getting closer to my goal of 2 clear months with zero symptoms and 3 days of multi-hour exercise.
I had a bit of a relapse when I felt ill for 2 weeks straight, after picking up an unrelated infection, but that may have been the infection right?
Long Covid - 16 months on - And I declare it beaten (or at least beaten enough)
Not long before leaving on this trip I had managed around 20 days with no symptoms and have now reached the self-imposed 2 months (or as close as I can be bothered to wait) milestone and still, no symptoms.
Whilst nervous that I may speak too soon, there are just some things you simply have to draw a line under.
Today I am drawing that line.
Wish me luck.
A toast to my continued good health and yours.
With grateful thanks
TO MY WIFE - MRS P:
I am very lucky. Mrs P, my long suffering wife said back in December 2020, when a contract I was working on came to an end, that I should not work again until I was fully free of this debilitating illness.
In order to allow me take this time to recover, Mrs P has worked very hard for many months to keep the wolf from our door. We are also fortunate to have savings we can dip into should/when the need arise.
This time away from any kind of work has been an enormous help to me and I absolutely could not have done it without her help, hard work, care and most of all, love.
I can never thank her enough. Though I shall enjoy spending the rest of my life trying.
ALSO TO MY FAMILY, FRIENDS & WORK COLLEAGUES: For listening to me whine about how rubbish I felt for months on end. For helping/covering up for me at work when my brain just would not function. For taking me for walks (and again listening to me complain) and simply for being there.
What help is available?
I am neither a doctor nor an expert. My opinion is based purely on my own, very personal experience with COVID-19 and Long Covid. I can also only talk about help available in the UK. Even then I can’t talk with much authority as I received no help myself.
I personally found the following very useful:
Zoe Covid App - I daily reported my symptoms to this App. My input and that of tens of thousands of other users around the world is helping doctors and scientists behind the App better understand what is going on. This free App also provides very useful video links to updates in research, talk about latest theories and discussions about the importance of diet etc. You can find out more by clicking the following link.
Facebook forums & Twitter feeds: I am very aware that there are a number of Facebook pages and Twitter feeds that some people find useful. These platforms aim to help people suffering from Long Covid by providing a place for sufferers to go to discuss their issues with an audience that understands their concerns and needs and to find out useful information.
Whilst you may find some of the following links useful if you are struggling to get help I personally didn’t use them much.
I found some (and I do emphasise the word ‘some’) of the talk/threads have a tendency towards being a bit too ‘out there’ for me. There are certainly some very strange theories and suggestions as to herbs, medicines etc. that can help.
I suggest you choose your platform/tribe carefully.
Facebook:
https://m.facebook.com/LongCovidPage/
Twitter:
On Twitter just type in “Long Covid” in the search bar. It’s all there, from the helpful to the truly bizarre.
