I read everything I could about COVID and Long COVID. But I was starting from nowhere. I’d never been ill before. Not long-term ill, without, seemingly, any chance of getting better.

There were diagnostics that we are all familiar with, the PCR and RAT tests. But if you were a long-hauler, as they got called in the early days, there was nothing.

Validating your illness was, well, impossible.

Symptoms were random and different from person to person.

I tried all the usual things to get better. Nothing worked. I could find no patterns.

Pain killers didn’t actually have any effect!

Coughs remained for months but were “unproductive”.

Aches and pains came and went.

Balance and coordination was variable.

My days could be wiped out from the start. On waking I may have some energy, I may not. If I didn’t, I might recover after a few hours, or all of the day, or several days. It seemed random. And, “recover” is a relative term. It really means to have marginally more energy than you have when you are flat on your back and can’t walk, balance or manage to do much at all.

I read about pacing. It didn’t work, not for me at least.

My hunger drove me mad, I was ravenous almost all of the time. But no matter how much I ate, I gained no weight, and my feelings of hunger stubbornly remained.

Resting often made me feel worse. We aren’t meant to sit or lie still for long periods of time, but sometimes there was no option. It didn’t help, and the pains in my chest, back, ribs, hips and knees were likely to be because of being still too long as much as they were due to the illness. Or maybe because of a combination of both.

My brain didn’t work properly. Sometimes, I failed to be able to process and respond to simple questions. I could hear, decode and comprehend, but for the life of me I couldn’t formulate a response. And even if I could, verbalising it was hard, if not impossible.

The frustration I felt for being in this situation was immense. I felt quilty that I couldn’t get better.

Reading was as exhausting as running a marathon.

Thinking was happening, but not in any normal way. Capacity narrowed and became singular and pedestrian. It was also quite exhausting.

Stress made things a million times worse… I ran a company before COVID… it was in tatters and I had no capacity to sort it out.

It was difficult to tell at the time just how much of my physical and mental capacity I’d lost, but looking back, it was both scary, and slightly unbelievable.

So, here I was. Stuck. In a metaphorical bog. And unable to get out.

I struck me that I was no longer myself.

And I was in a world I didn’t recognise.

This was an adventure game I didn’t really elect to play, but here I was.

Feeling naked, lacking in knowledge, no resoures to bring to bear on the problem, and sometimes having to miss a turn because someone had rolled my dice for me and my character got to be unlucky.

I was lost in a strange realm without a map……

I thought I would recover from the acute bit of the illness like a cold or flu. And to start with I thought that was exactly what was happening. Until it wasn’t, and as a hard headed bloke who thought some exercise would help shake it off made me fall into a deep pit the like of which I’ve never encountered before.

The pit caused all sort of things to happen including stopping me from being able to work.

I was exhausted.

I couldn’t think.

I struggled to walk the dog.

Gradually all the normal bits of life retreated until I was unable to do much at all.

And it want on for months and months… well, years actually.

My thinking was so impaired that although I could hear my wife talking to me, and I could understand what she was saying BUT I struggled to respond. Sometimes, I couldn’t formulate a response at all and just sat there like an idiot.

Sometimes, I could think what I wanted to say but just couldn’t verbalise it… that was quite disconcerting. Not to mention being confusing, “why won’t the words come out?”. And at least a little bit scary… Had I lost the ability to speak?

I hadn’t but the processing chain from hearing, decoding, thinking of a response, and verbalising it was clearly not working properly. And sometimes not at all.

Apparently, although I couldn’t hear it, it took me so long to find the words and seak sometime I sounded like I’d had a stroke… A friend and long time colleague told me later that she was really worried for me because my responses were so poor.

On one short dog walk, flat and very close to home, I realised I couldn’t control my direction very well. I was heading, involuntarily, towards the canal. I stopped myself, and then tried again. Same thing, veering to the right and unable to stop myself. I stopped, turned and headed to the wall at the other side of the canal path. I lent there a while, wondering how I was going to get home.

This happened a few places but it was very worrying when it happened next to water.

And all the time I had no way of describing how this all felt.

What the exhaustion was actually like.

How pedestrian my thinking was.

Everything I tried to do seemed to make things worse.

It was unpredictable and there was scarcely any progress at all. I really was just bumping along the bottom somewhere between sleep and awake but without any real faculty to behave much more than like a zombie.

Some days, with a marginal improvement I felt like I was getting better. I wasn’t, it was just a small up tick in ability.

And it was this sort of thing that made me realise that I was pretty bad. Not nearly as bad as some people.

Only once I’d physically recovered and was working on cognitively recovering (still working on that!) I could look back at my notes from the time, on some of the situations and start to realise just how bad things had been…

I really feel for the people who are still living this and who haven’t found any relief or recovery.

I remember talking it through with a doctor (frined) who is an A&E specialist. He also sufferred COVID and Long COVID and had some bizarre symptoms himself. He said it was impossible. There was no consistency and some people had extreme symptoms.

Well, doctors still don’t know how to diagnose properly. The guidelines in the UK (I am in touch with one of the tech companies that provides the latest guidelines to doctors based on NHS England agreed parameters) are still a group of fairly generic symptoms.

For me this tells me that there isn’t an accurate diagnostic available. I mean, there is but its only just edging its way into the market and our nearest is in Germany - so, not that near then. Hopefully, there will be one in the UK soon.

What is this diagnostic? Well, it’s based on a well established technoloy which has been modified to be able to identify the micro clots that are the foundation of all the issues.

If you want to read about the micro clots this research paper is a good starting point but I’ll be writing about them in more detail because of how significant their discovery is.

Back to the diagnostic, its a blood test. The sample of blood is passed through an imaging flow cytometer - this is a piece of equipment that can identify small molecules in the blood and it has been modified to be able to identify the clots that are originated by COVID.

These small clots aren’t like normal thrombotic clots. They do something very tricky to deal with. They clog, probably temporarily, any and every organ in the body that has capillarys (the smallest of the blood system’s vessels). When they cause a blockage they starve any cells downstream of the blockage from receiving oxygen and nutrients. BUT critically because the blood isn’t flowing the cell waste isn’t being removed.

This leads to the cells behaving as if they are in fight or flight mode and operating anaerobically but that can only happen for a short time (about 10 seconds - which is why 100m is about a 10 second race! - sprinters rely on this anaerobic activity to run fast for a short time).

What happens next is disasterous…

The cells operating anaerobically fill with the waste product - lactic acid, which would normally be taken away by the blood but you’ll remember that the blood isn’t flowing past those cells. They are poisoned.

The team at Renegade Research did a citizen science experiement, the acid test, to see if people suffering with Long COVID had higher than normal levels of lactic acid. They do. Significantly. And, unusually at time of day when they shouldn’t, liek first thing in a morning when waking up. A time when lactic acid levels would be at their lowest.

Of course, thinking about the random temprorary partial blockages in every organ would mean that as the micro clots move, block, move, block around the blood stream cells that were down stream would be implicated and swap into anaerobic mode, then back again allowing the lactic acid to be removed and filtered out as normal. But then the liver and kidneys are also organs with many small capillarys, and they are probably partially blocked too so the filtering probably isn’t that effective.

Lactic acid is a toxin and high levels can lead to all sorts of inflammation and worse… that’s for another post.

A little recap of whats going on:

Cells that are starved of oxygen and nutrients; Causing cell hypoxia

Cells that are poisoned;

Areas of all organs that are partially blocked;

The upshot of all this is that nothing is working fully, areas of the body are hypoxic and under severe stress. Inflammation is rife and most of the signalling pathways are disrupted.

Is there any wonder that the symptoms are varied? They will depend on what organs are blocked & by how much. It is, by degrees, utter chaos.

And yet, our bodies continue to function.

Although, we feel, unsurprisingly exhausted.

That makes it highly unpredictable from a diagnosis point of view and gives doctors little chance to pin down what is going on.

When you start to look at the symptoms associated with hypoxia, at least for cognitive function, there are some very clear parallels.

And yet, all this is treatable.

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