HAJI MOHAMED DAWJEE: Yes, I’m talking Lo-Co again
I know the title is a bit misleading – you’re probably going to think that it means what I am going to write here is going to be a bunch of mad, nonsensical rubbish. But it isn’t. Lo-Co is the new, shortened version of Long Covid, which is in itself an unofficial term, but here we are.
I’ve lost count of how many weeks I have had this for now. 18? 20? Have I had it always? Will it be forever? I don’t know. But you know what, it might. And there’s a massive gap in the news reel of the South African media industry that’s missing out on the studies and research that are going on in the background while we keep talking about stats like the uptake rates, or intake rates, or death tolls.
The above are all important, don’t get me wrong, but I need more and I know that, so I seek it elsewhere and because I have absolutely no idea how many people in South Africa are living with Lo-Co, I have no idea whether any of this information is being shared.
I have yet to see a bunch of local support groups pop up and so I am still part of a couple of online British ones where there is a lot of information and well… support. People are walking with limps. Suffering from month-long headaches. Being diagnosed with blood clots, or weird rashes and skin disorders, and reading all of it makes me feel a bit better and a lot less mad.
When someone walks into my flat, or we’re out to meet family, or even in instances with my wife where we’re addressing my limp, or my sudden carpel tunnel syndrome, and I’m asked about it, I have no idea what to say. Honestly.
Because no one here is informed enough about the toll the inflammation of the disease takes on the body and I have started to think that no one believes me. I wish I could say I broke my foot and that’s why I have a limp now, but I haven’t, and I don’t know why it doesn’t work properly.
But when I have these conversations with my British friends who seem more clued up on the research, I start to feel okay again, these things are in fact happening to us, a lot of us. Our brains don’t work the same anymore, we have a hard time reading out loud, I even mess up a single sentence in bedtime books for my son or develop a stutter.
We are all having these problems. Work is harder, especially as a writer because everything moves so slowly, my body, my thoughts, my brain, and I feel as though I want to step out of this imaginary messed up world that is holding my body hostage. But like I said, there is information out there, we just don’t all have it, so I thought I might share some that was shared with me recently.
The British Medical Journal recently published a paper called: Management of post-acute COVID-19 in primary care. The most important words to remember here are “post” and “acute”. Perhaps these will become official terms of the illness once we’re able to define it better, but in defining what the symptoms are, they are wildly varied.
To quote from the article: Post-acute COVID-19 symptoms vary widely. Even so-called mild COVD-19 may be associated with long-term symptoms, most commonly cough, low-grade fever, and fatigue, all of which may relapse and remit. Other reported symptoms include shortness of breath, chest pain, headaches, neurocognitive difficulties, muscle pains and weakness, gastrointestinal upset, rashes, metabolic disruption (such as poor control of diabetes), thromboembolic conditions, and depression and other mental health conditions. Skin rashes can take many forms, including vesicular, maculopapular, urticarial, or chilblain-like lesions on the extremities (so called COVID toe). There seems to be no need to refer or investigate these if the patient is otherwise well.
So, what do we do? The article, based on research, of course, suggests blood tests stating that: Lymphopenia - (I had to look this up because I am not a doctor and what it means is that there is a reduced amount of these cells in your blood. During an infection such as COVID-19, white blood cells attack, attach to and help induce the production and secretion of chemicals that help fight the virus. But when there is a lower amount of these cells there are fewer soldiers to fight) - is a feature of severe, acute COVID-19. Elevated biomarkers may include C reactive protein (for example, acute infection), white cell count (infection or inflammatory response), natriuretic peptides (for example, heart failure), ferritin (inflammation and continuing prothrombotic state), troponin (acute coronary syndrome or myocarditis) and D-dimer (thromboembolic disease). Troponin and D-dimer tests may be falsely positive, but a negative result can reduce clinical uncertainty. Further research is likely to refine the indications for, and interpretation of, diagnostic and monitoring tests in follow-up of COVID-19.
In that one quote alone I found myself educated and also scared. So much to know, so much known, yet so much yet to follow. What’s clear though, and has been clear for a long time, is that the acuteness of the disease is substantially more evident in patients who did not check all the boxes for the CDC’s definition of symptoms. Many of them had no cough, were not hospitalised, had no serious lung infections and even in some cases, no fever. However, brain fogginess and shortness of breath and severe fatigue, in my reading, as well as on support groups, seem to be consistent.
Acute COVID-19 is also not reserved for those who suffer from serious co-morbidities. Other studies have shown that many Lo-Cos are people who were extremely healthy and fit. There is no cure and the only treatment the article suggests is that until follow-up studies are done, all we can be do is treat the symptoms, but the article mentions that the treatment should be given holistic support and an avoidance of over-investigation.
To vindicate the “over investigative” aspect – something all doctors are prone to because they expect under normal circumstances for the body to function on cause and effect – the paper says, “Monitoring functional status in post-acute COVID-19 patients is not yet an exact science. A post-COVID-19 functional status scale has been developed pragmatically but not formally validated - a simplified version of this is reproduced in the supplementary material. Referral to a specialist rehabilitation service does not seem to be needed for most patients, who can expect a gradual, if sometimes protracted, improvement in energy levels and breathlessness, aided by careful pacing, prioritisation, and modest goal setting.”
I have no doctor to go to because I can guarantee, almost with absolute assurance, that my arthritic-like symptoms will be over investigated and attributed to something that has nothing to do with the fact that these symptoms are indeed a result of a virus turned acute. And this will not be considered because there is just not enough information.
To counter my fatigue, I have started taking a bi-monthly “jet fuel” IV. A drip filled with all sorts of vitamins and supplements - if it starts with anything from A to Z, it’s in that bag and while I am sure this is the equivalent of injecting a healthier version of Red Bull straight into my veins, it has helped with my energy levels.
I am no longer a concrete zombie who is only able to lie stiff in bed, totally unaware of the fact that I am in bed to begin with. No. Instead, now I am a limping, very short person, who I am convinced looks like a crazy lady pushing a pram at a frantic pace when I am running errands, so I get can get back home without being pulled into a room for questioning as though it’s the early 20’s when people were less humane, with a chain smoking police officer interrogating me and saying ma’am, why have you escaped the confines of the Freak Show and stolen a child? A backward and horrible thought, but one that is constantly going through my mind.
Haji Mohamed Dawjee is a South African columnist, disruptor of the peace and the author of 'Sorry, Not Sorry: Experiences of a brown woman in a white South Africa'. Follow her on Twitter.