HAJI MOHAMED DAWJEE: Long-COVID: The hope, hopelessness & absence of help
21 weeks into Long-COVID and I finally feel better. I don’t want to get my hopes up too high, but I do want to admit that for the first time in a long few months, I do feel that there is hope.
I wanted to share some of the treatment I have been getting, especially to help cope with the exhaustion and fatigue. There are several IV labs that are available and have become quite trendy, they’re mostly used I think for aesthetic purposes - collagen boosts and that sort of thing and even believe it or not, as a quick drip for a hangover cure.
But about three months ago it was suggested to me that I try the one filled with a cocktail of vitamins and minerals. It’s called the Jet Fuel pack at my specific service provider and I have to admit, the fatigue has really stalled since I’ve started taking those on a regular basis (read: if and when I can afford them, they are quite pricey).
During my last session, I was also injected with about 30,000 units of vitamin D because the doctor advised that she had been reading and people with Long-COVID seem to be cutting it a bit short and loose on the vitamin D front. A doctor friend of my wife’s said that these drips are basically like having the equivalent of an energy drink injected right into your veins, but hey, whatever it took, I was willing to try. And it seems that the intravenous Red Bull is helping.
Look, it’s not a magic cure, I am not a medical professional and I have no idea if this is going to help you if you have Long-COVID or not, but pure desperation led me to these IVs, and without any doctor properly having kept up with any research, or without sending me from specialist to specialist who come at R3,000 per visit, trying the drip seemed like the least I could for my weary body.
The fatigue has not disappeared altogether, I still find myself dipping every now and then, but I’ve started to treat this with a mixture of a vitamin B complex effervescent mixed with a shot of Red Bull. This is not healthy, not recommended and I am not condoning this behaviour, but again, with no doctors out there to sufficiently help me get through the day, I have resorted to experimenting on my own. Support groups make it evidently clear that I am definitely not the only one.
But it’s not just the fatigue that Long-COVID drags along with it, is it? It’s a host of symptoms that almost feel autoimmune, except that you cannot monitor them adequately, they come with no timeline and they hit whenever they want.
Like when I got a stress fracture in my foot from absolutely nowhere and started to limp for two weeks. After a cortisone injection from a doctor, who again had never heard of Long-COVID, the pain has subsided and I no longer have a limp.
My heart rate is still not where it should be, but I think this may be due to the fact that I am also not half as fit as I used to be, but I can walk longer distances without becoming completely breathless. Something I couldn’t manage before.
Again, I am trying to manage my expectations of being cured and slowly reaching peak “back to normal”, but at the same time, I don’t want to take these improvements for granted. If it can happen to me, it may be possible that others can start to feel a bit better too, right? Small mercies and all that.
There’s a huge difference in limping and having a slight irritating pain in your foot, and not being able to carry your kid to the dinner table to being able to take him for a walk on the prom and have a picnic for lunch – something I can actually do now!
Look, all is not as it should be. I still have trouble reading, especially aloud I’ve noticed. I stutter and miss entire words even in what are mostly picture books and bedtime stories. My memory recall, to my wife’s great irritation, is terrible, albeit funny. Ideas for columns or chapters of books or imaginary skits that used to stick, disappear as fast as they come and I have to write every thought down and it generally takes me a long time to accomplish a piece of work that would normally take me 20 minutes.
My vision blurs in and out whenever it wants to and some days not at all and about a week ago, I pulled my son’s pants back on without realising that he still wears a nappy – I caught my mistake in time.
Nevertheless, I felt it important to share this with you, what I like to think of as progress - and report on it because maybe this thing is forever, but maybe it isn’t. And even if research shows that it sticks around and we have to adjust our lives and our expectations ad-infinitum, then at least, perhaps, we can look forward to slight silver linings where we feel almost like our normal selves.
But most important of all is that while this is a personal entry, a personal report so to speak, it means absolutely nothing in the face of a government, health department and medical society in general who are not rallying to talk about Long-COVID, make it known, talk about the long-term effects or say anything about it at all.
It makes me wonder if those who matter most even know that it’s a thing. Or that it’s happening and that while it seems as though the community of long-haulers is small in South Africa (there is no way of telling because no one is collecting these stats to my knowledge), then surely, at least, there must be some inclination to stay informed of interventions, research and treatments that are occurring elsewhere in the world. Do those in power even read the news, I wonder?
Over a month ago, for example, the NHS in England announced that people suffering ‘Long-COVID’ symptoms would be “offered specialist help at clinics across England”. The specialists include, as the press release on the website reads: respiratory consultants, physiotherapists, other specialists and GPs, who will help assess, diagnose and treat thousands of sufferers who have reported symptoms ranging from breathlessness, chronic fatigue, “brain fog”, anxiety and stress.
The NHS was also able to provide an estimated statistic that at least 10% of COVID patients suffer from effects and cannot shake off the virus several months after contracting it and further states that, “perhaps 60,000 people could be suffering from Long-COVID symptoms after more than three months”.
The NHS is investing £10 million in funding to kick-start these Long-COVID clinics to provide rehabilitative care.
The South African government has been internationally praised for the management and intervention taken to prevent the spread of the virus and protect its citizens – in fact, they’ve done an exponentially better job than England, and I take nothing away from that, but I have yet to hear the words Long-COVID uttered by anyone in power.
Where is our help? And when does our hope turn into hopelessness instead?
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.