I’m scared that I’m dying of Long-Covid.

I think I have long-covid, and I’m scared that it might be killing me.

On July 4th 2020 I had my 47th birthday, and life was good. Besides growing a ridiculously long and unruly beard, I’d used the lockdown in the UK to focus on my fitness. I’d always kept reasonably fit, but in 2020 I upped the anti. Maybe it was a subconscious way to combat the virus that lurked omnipotently around us, or maybe it’s just what I would have done with all that extra free time anyway. But whatever the underlying reason, I found myself cycling 100 miles a week and weight training every other day. I found myself breaking all my cycling and weight training PB’s at 47 years of age. Damn, the strongest I’d ever been in my life; it felt good, and my shirts were tight in all the right places.

Taken Down

On July 20th I went for a normal training ride, 32 miles with a couple of guys from my cycle club, and I wasn’t right, couldn’t keep pace with them. I thought nothing of it, we all have bad days and I assumed I was slightly over-trained as I’d been hitting it very hard for months. I stayed off the bike for 6 days and then did a 46 miler, nothing too taxing, but again I couldn’t keep pace with the guys who were not as quick as me all year.

Later that week I developed the strangest phenomenon whereby the skin all around the bottom of my ribs at the front and back felt severely sunburned when touched, but I hadn’t been in the sun. Just the slightest brush of my t-shirt against my skin was painful. Even lying back in bed would hurt the skin on the back of my ribs.

A couple of days later on the 28th of July I was having a normal working day at home when suddenly out of the blue, I felt crippled by a wave of fatigue. I’d planned to do some house chores at lunch time, empty the dishwasher, put some clothes away etc, but I was too tired to contemplate this. I went straight to bed and slept all afternoon. This had never happened to me in my life before, and I knew something wasn’t right. I phoned the doctor and they booked me in for blood tests at the hospital.

My results came back showing most things normal but with high IgA in my liver. They wanted me back for more tests, and so it began, a never ending round of blood tests whilst my symptoms progressed. The next thing to appear was acne, all over my face. I’d never had acne, not even as a teenager, but this was terrible, like boils on my face. Then came a deep burning pain in the middle of my chest. I’ve never had heartburn in my life, but this is what I assumed it was. But it was so painful as to be debilitating, and it was constant. I was becoming desperate for answers.

The doctors prescribed me Lansoprazole (to reduce stomach acid) and I was drinking Gaviscon like a soft drink, but neither drug touched the sides with the heartburn. Intuition tells me this isn’t heartburn anyway. The initial blood tests were coming back negative of everything, including COVID-19 antibodies. I have to say, the doctors were good, they took me seriously, and referred me to specialists.

I started suffering with dry mouth which was again constant and enough to wake me up several times in the night. I had to try saliva producing sweets, but they didn’t work. This seemed to give me oral thrush and I’d wake up each morning with a thick coating of white mucus on my tongue. I was getting sudden pains in my body like small electric shocks, they can be anywhere in the body, hands or feet. Sometimes these are short shocks, sometimes it feels like I’m being pricked by a needle. Sometimes my arms or legs or even my whole body will suddenly involuntarily spasm. I had digestive pains too, it felt like my whole body was under attack, like something was moving around the various systems in my body trying to find a weakness.

The symptoms felt connected but never ending; my lower arms, legs and head fizzing randomly, like the skin was crawling slowly over these body parts. Goosebumps appeared randomly over my body making me shiver. Tinnitus in both ears, which is constant from morning until night. And also anxiety, bad anxiety. I’ve never suffered anxiety in my life, and shamefully I’ve pretty much dismissed anxiety in people before this. But now I’ve suffered from it, I understand the depths to which it can go. I understand perfectly why some people would choose to end their own life rather than continuing with a brain chemistry which makes them feel anxious instead of happy. I don’t know to this day whether my anxiety is caused by worry of all of the above symptoms, or whether the anxiety is caused by the underlying condition I have attacking my brain as well as my body.

The blood tests kept coming back with high liver enzymes, but also now, high EBV. (Epstein Barr Virus). I was referred to an oncologist at the local cancer ward, and also a neurologist. Both insisted upon more and more blood tests, ultra-sounds, MRI-scans and lumbar puncture tests. The cancer checks thankfully came back with nothing. My sister had successfully beaten breast cancer the previous year, and I saw what she had to go through. She was incredible in her positivity, but I was scared about having to do the same.

Spinal Inflammation

The MRI scan results came back and showed I had spinal inflammation, with a lesion on my spine. The neurologist said he didn’t know what was causing it. The initial lumbar puncture results came back with a blank other than I didn’t have EBV, something else was causing the EBV virus count to spike.

The last five months have been incredibly hard. I’ve gone from being a very athletic 47 year old to becoming someone who can’t exercise. I’ve tried gently going out on my bike a couple of times, but my heart-rate seems to spike unnaturally high and I feel fatigued. In fact I sometimes get a rapid pulse whilst just at rest. My sex drive has also plummeted but luckily I have an understanding girlfriend. Occasionally I will have a good day. If I eat carbs or have alcohol, it seems to make my symptoms worse. I’m writing this whilst I’m on holiday in an all-inclusive resort in Turkey, I should be eating and drinking what I want. Instead, I’m having to stick to water and a ketogenic diet just to keep my symptoms at a tolerable level.

Despite me returning a negative COVID-19 swab test and a negative antibody test, I kept wondering if I had COVID-19 and joined a Facebook group called ‘Long Covid Support Group’ which now has almost 32,000 members. Whilst trying to keep an open mind about what I’ve got, and with no doctor or specialist being able to pin-point my condition despite having almost every test under the sun, I was doing as much research as I could into what I could possibly have.

The bizarre long-covid coincidences

When you hear about people suffering with Covid-19, you probably picture elderly overweight people with breathing problems, just like I used to. They either die or they get better in a couple of weeks like Donald Trump.

But what you might not know is that there are a bunch of people who are catching coronavirus, and not displaying the usual symptoms, or if they do, they go on to develop other symptoms which they are then not recovering from.

What amazed me about the Long Covid Support Group was the amount of people consistently reporting other issues that don’t often get associated with coronavirus. And what sent a chill down my spine was how many of these symptoms correlated with my own:

Fatigue- check

Allodynia- check

Acne- check

Intolerable constant heartburn- check

Low tolerance to exercise- check

Tinnitus- check

Fast Heartbeat- check

Digestive pains / GI Issues- check

Skin crawling and fizzing- check

Neurological Issues- check

Liver Issues- check

Anxiety- check

Good days, bad days- check

Low tolerance to sugar and alcohol- check

Inflammation- check

Overall feeling of malaise — check

In fact, I could go on listing. But the fact that I’ve been suffering all of the above, coupled with the fact that these symptoms are being reported by hundreds of people on the Facebook group, as well as the doctors being unable to give me a diagnosis as to my condition are all pointing me in the direction of Long-Covid.

I read a stat the other day in a piece about Long-Covid which suggested that only 22% of the afflicted tested positive for coronavirus antibodies. So what does that mean? You may be forgiven for thinking that these people aren’t suffering from Covid at all, but perhaps some other disease, perhaps just anxiety, perhaps nothing?

I’m sill without medical diagnosis

I still don’t have an answer as to what is wrong with me, why I have spinal inflammation, and why I’m suffering from all the other weird symptoms listed above. I’m 90% sure it’s Long-Covid but I’m just about experienced enough in life to keep an open mind as to what might be the cause. Perhaps it is an underlying auto-immune or chronic condition, and perhaps I’ll get a call from the neurologist next week saying that my lumbar puncture has thrown up a result.

Right now though, all I can do is try and get through this. The most scary thing is that I’m becoming slowly less capable, less fit, and I’m incapable of getting stronger. At the back of my mind I keep wondering if this will keep progressing into something much worse, and I worry how much damage is being done to my internal organs. Is my heart being damaged? My liver? My kidneys? Will I ever get better? Sometimes it feels that I won’t and that’s scary. Although Long-Covid is now officially recognised by the authorities, nobody knows anything about it. There are theories as to what might be going on, but nothing concrete.

Keeping the rest of the world out.

My family, my girlfriend, my very close friends know I’m sick and they kind of know the impact it’s having on me. They’ve seen me go from a vibrant happy-go-lucky athletic person to someone who is quieter and unable to exercise. I think I’ve aged a lot in six months, my muscles are shrinking a lot. In July I could jump onto my chin-up bar in my bedroom doorway and pull myself up fifteen times in a row. I tried the other day for the first time in months and I managed five. I know some people couldn’t care less how many chin-ups they could do, but for me that upset me.

My wider circle of friends, colleagues and acquaintances on Facebook have no idea that I have something debilitating affecting me. I don’t mention it on social media, and go about my business as normal, still posting the odd pic on Facebook, still joking around. One friend commented on one of my photos the other day, and said ‘You look really well.’ I had to smile at the irony.

I’ve been tempted to post about my condition on Facebook, but I can’t be bothered. I feel it would take a lot of energy, not necessarily to share, but rather to deal with the aftermath. I don’t want to be seen as playing the sympathy card, I don’t want to thank people wishing me well, and I don’t want to come across as attention seeking. My energy is better focused right now on me, just me and my recovery.

There are also a small subsection of my Facebook friends who are very much in the camp of ‘Covid is just bad flu / masks are a waste of time / Covid is a hoax’ etc. I’m not a shrinking violet, far from it, but again right now, I just don’t want to seem like I’m picking a political side or making some kind of point. To do so might elicit debate, and whilst I usually thrive on debate and love making my viewpoint known, right now I just want to get better, it’s that simple. Until then, I do what a ton of guys do; we just retreat into our caves until we heal and recover.

As far as the world knows, I’m just fine and dandy, smiling away in Facebook pics as if my life is pure bliss. I wonder how many of my smiling acquaintances on social media are hiding their own truth? Perhaps you do too?

So what have I learned?

Anyone can get sick at anytime. Anyone. You know that anyway, and so did I. I don’t want to come across as preachy, so I’ll stick to one simple learn.

Maybe prior to my illness I would come across strangers in day to day life who seemed miserable. I would often judge these people as being negative. But who knows what demons they were facing. Maybe they were sick like me, maybe a loved one had just died. I’m no longer the happy bouncy person I used to be.

On holiday right now in Turkey, I should be having fun, but find myself being quiet, withdrawn, and reflective. Perhaps someone here in the hotel might interpret me as miserable, when in reality I’m just scared.

Sometimes I go the other way and smile and laugh, when in reality it’s forced and fake. The true feeling inside is anxiety. I try not to judge people on first impressions as much now.

The future

I just don’t know if I’ll ever heal. Sometimes I feel hopeful that I will, sometimes I think I will get progressively worse until this thing kills me.

I’m doing as much research as I can. There is anecdotal evidence that a low histamine diet and fasting might help. That’s what I’m trying next because like most humans, I’m designed to hope and fight. That’s all I can do. And hopefully I’ll be around in a year or two to write about overcoming Long-Covid. Unfortunately it’s not a piece I can write about yet.

47 years old and still learning. Taking one day at a time.

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