Long-Covid: ‘Will this last forever? Will there be permanent damage?’
NICK TOMLINSON is a retired school principal from Derry who has been diagnosed with ‘long Covid’. He says health professionals don’t seem to know a lot about the condition and more needs to be done to help people living with it. Things, he says, must change.
I tested positive for Covid 19 on October 8, 2020. Seven months later, I still have many of the symptoms. I am one of the lucky ones, writes Nick Tomlinson.
There are days when I can focus on writing something like this; there are days when I can get out for a short walk. I am able to cook - sometimes. I am able to garden - sometimes. There are many ‘long-Covid’ sufferers who can’t do those things.
Despite my underlying long-term respiratory condition, I can breathe. Not perfectly, but I can breathe.
Each morning, I get a sense of what kind of day it will be. There is an old black and white film in which a man says, ‘It’s a real pea souper today,’ as he steps out into the London smog. On my pea souper days, I will get very little done, as the fog descends on my brain and lungs.
By the time I have tried to think something through, I will forget where I started or why. I will feel conscious of my laboured breathing. I will feel a pressure, as if a weight is bearing down on my chest. I will get palpitations. I will have tinnitus and the most chronic headache imaginable.
The brighter, less foggy days require a cautious approach.
Try to do too much, and there are likely to be a few days of fatigue and breathlessness ahead. I have made this mistake a couple of times. I had ignored the advice from the doctor: don’t treat this as something you try to beat by ‘building up your strength’ with exercise. It doesn’t work like that.
So, it’s just gentle walks and light gardening for a while.
There are stranger symptoms, as well. I have woken up in the middle of dreams, kicking, punching, thrashing around violently. These night terrors were unknown to me before Covid 19. I didn’t link the terrors to Covid 19 in any way until I spoke to someone from the Covid support services. I was told that many people with long-Covid are reporting this.
And, then, there is the regular self-questioning. How much is directly caused by Covid 19 and how much is anxiety related? The brain and lungs are organs well known for their links to anxiety attacks, and there is a lot to be anxious about.
Does this last forever? Could this deteriorate to the point of a dementia-type condition? Will there be permanent damage? No-one really knows, it’s a new disease.
There are pea-souper days at one end of the spectrum, and clear sunlit days at the other end.
Are the bad days still as bad as before and as frequent as before? Are the good days better than before? I need to look more closely at this. I want to know if I am getting better, the same as anyone does with any illness.
Most other illnesses, though, have the benefit of years of research and medical experience and expertise. With Covid, to some extent, we are our own researchers.
In England, there are clinics set up across the country specifically to support people with long-Covid. Here, to my knowledge, this role has been left primarily to the Chest, Heart and Stroke charity. Surely, Stormont should not be relying on a charity, which has to support many people with serious conditions aside from Covid, to take on this extra responsibility.
CHS (NI) have been extremely helpful in providing therapies and advice. However, Covid support should have its own fully funded support services and should not be dependent upon a charity which was set up to address other health conditions.
I am optimistic that I will recover. In the meantime, I need to be patient. Unrelated to my illness, I retired from my job in December 2020, thinking I would be working at something else by now. That has been put on hold.
My focus now is to accept the ‘foggy’ days and to enjoy and be thankful for the clear days.
○ Nick Tomlinson is former principal of Groarty PS and Cumber Claudy PS.