'What's it like to have long COVID?' It is the question nobody wants to ask, and answer that you feel almost embarrassed to give... What's it like to have 'long COVID' ? Well, I really wish I couldn't tell you, but I can.
Dateline: 4th November 2021. A year ago today, I was on day 6 of infection, 4 days post a positive test. I was feeling so ill. Now a year on COVID19 has left me dealing with long-term issues - even though I have recovered from the virus itself nearly 12 months ago. Let me tell you, it has been a life changing year. I have become one of those people that can reel off illness when asked.
I am so fatigued that I am barely able to walk upstairs, I still get short of breath from the simplest task, I suffer sometimes debilitating headaches, I experience bouts of delerium, I seem to have what can only be described as brain fog - and my tolerance of even mildly spicy foods has become slim. That is of course following 4 months of not being able to smell or taste anything anyway.
I was diagnosed with what is known as long Covid in April 2021, and I would say, that living with the after-effects of Covid-19 continues to be harder than dealing with the virus itself. At least with the virus I could feel an endpoint where my body became stronger and the immediate symproms got less, and I felt capable again. Long COVID has got to the point now, where experts say it could turn out to be a bigger public health problem than the excess deaths that have occurred since the start of the pandemic.
So I am one of the so-called “long-haulers”, with quietly debilitating symptoms that baffle doctors and prove difficult or even impossible to treat.
‘Some days I can’t manage a shower’
On October 31st 2020, I first began experiencing Covid symptoms, and I haven’t had my life back to normal since then. I was a fairly textbook case. Fever, body aches, a few days later a bit of a cough, then a couple of days feeling a bit better - before the onset of some pretty scary breathing problems which at one point got so bad the doctor was called out to look at me. Courses of steroids, and some other prescribed drugs later, and after a couple of weeks I was back on my feet and started going through the motions of normal life again. Very much unlike before though, where I went for regular exercise, saw friends and thrived from the buzz of work, I found myself with very little energy. My chest ached and my body still felt all wrong, but I pushed through Christmas and January. By February 2021, I felt like I crashed completely. Since then, I’ve been on this strange rollercoaster where I can have a couple of good days when I can manage my daily routine and bits of exercise like going for a walk to the shops with Elaine. But then it’s back to square one and my chest hurts, my breathing is off, my voice goes hoarse and I struggle to get out of bed. A CT scan back in March revealed some damage in the small airways of my lungs. Nothing structural, but some small airways have narrowed from inflammation. So I’ve been put on a daily steroid inhaler to combat that. Some days though, when exhaustion takes hold, I feel like I can’t even manage a shower. On the good days, bizarrely, I can be completely normal, managing even the heavier duties - and I feel hopeful that it is over. But each time I crash back down, it is increasingly harder to take.
I was brought up by parents of the 2nd World War - gun metal is no tougher.
Along with intense lung pains and asthma and shortness of breath. Since 'recovery' from COVID19, I have developed cluster headaches, which range from a dull ache to debilitating pain of the kind I can only assume are what migraine feels like. I am on migraine treatments which have helped. I have also been diagnosed with type 2 Diabetes, and have developed lesions on my arms and legs. In May 2021 I became increasingly concerned that I was experiencing episodes of Delirium, feelings of disorientation, confusion and struggling to speak properly or remember things. I am also frightened by the low moods experienced on an increasingly regular basis. The doctor insisted on an MRI to ensure nothing has changed structurally in my head... It hasn't thankfully. What that means of course is that I have no answers to my problems. God only knows why this is happening to me. There is long-standing evidence of viral infections affecting mental health, but that has never been me - I have always been the one to tough out a bad situation - I was brought up by parents of the 2nd World War - gun metal is no tougher.
To be fair, My GP practice has been so supportive but even they seem to be at a loss on most things. One genuinely said “I don’t know what to do for you next” and is seeking further advice. The conversation with the long COVID clinic seemed to be based around fact finding and data mining rather than curing my problems. The appointment gave me some assurance that I was not alone in my symptoms - but it didn't give me any hope for a solution anytime soon.
I remain positive, partly because I believe in bringing your whole self to the party of life and that helps me remain focussed. Mostly though, I remain positive because I am blessed to be surrounded by wonderful people - probably not the place to shout out my amazing partner in life Elaine, but sod it. Elaine inspires me every day. She is an amazing woman, not short of her own serious medical problems, yet always going above and beyond her own battles, to be by my side, and give her support for me during my struggles. She keeps me grounded, and I love her for that amongst many many other things. Then, professionally, I work for Compass, a large company at the head of the queue in supporting employee as well as customer well-being, which also makes me very proud.
There is no doubt, that we are learning that COVID lurks and rattles around in the shadows of our society. In a year we have moved from an out of control disease actively pursuing a deadly outcome, to a controlled disease, where death is much more unlikely. Vaccines have helped massively, and the more months and years tick by, the less relevant we hope COVID19 becomes in everyday life.
Everybody knows its there, and that some people live with ongoing symptoms, yet nobody wants to ask 'How has COVID affected you". Its like this massive elephant in the room, that question undoubtedy leads to a sliding scale of responses, and most people aren't prepared for any answer other than "its all good now".
You know, I don't want sympathy. I find myself boring myself with the answers of how I am feeling - so God only knows what others must feel. I have definitely changed.
Despite the gloom, I am very grateful to the people in the NHS, and I say thank you everyday to the powers that allowed me to survive COVID - there are obviously many thousands less fortunate than me. I just want some reassurance from my NHS that this isn’t just my life now. That at just 52 it won’t be like this forever and that further treatments can be found.
In the meantime, if anybody is suffering, and feels like me, that we shouldn't walk away from this elephant in the room - that it needs talking about - then please drop me a line, lets open the channels.