SUNDAY POST – LIVING WITH LONG COVID – March to August 2021

I’m aware that after mentioning on my blog that I was struggling with Long Covid, I would occasionally pop up for a few articles and then disappear again. Sometimes there would be a smiling pic of me and Himself, looking reasonably okay. However, there hasn’t been any continuity and I increasingly haven’t been visiting other blogs or being part of the lovely online bookish community that matters so much to me. So while I can, I thought I’d try to explain what has been happening over the last seven months during this Sunday Post article, hosted by the Caffeinated Reviewer. This section takes us to the third week in August…

Looking back, having Covid now seems a bit of a blur. I do know that Himself and I went down with it together. He was a lot sicker than me, as he had problems breathing which was aggravated by his severe sleep apnea. He needs a mask and a machine to help him breathe, but the breathlessness meant he couldn’t wear his mask. Neither could he manage breathing lying down. At its worst, he spent several days – at least four – sitting in his chair in the corner of the lounge, gasping like a fish out of water. His hands were freezing and yellow and he couldn’t get warm. That was the bit that really scared me – Himself hardly ever feels cold. And never in the house with the fire going.

Given that we’d gone down with the same illness at the same time, you’d think our symptoms would be similar, but they weren’t. I didn’t have any breathing problems and instead of Himself’s difficulty in keeping warm, I was running hot with a temperature. But more than anything else, I felt achy and tired. Overwhelmingly tired. Apparently I slept eighteen hours at a time – Himself several times struggled up the stairs to make sure I was still breathing. But then, I regularly also checked up on him during the middle of the night, after jerking awake bathed in sweat in the middle of a fever-dream, convinced he’d died in his chair in the corner of the lounge. I couldn’t sit in there with him, because it was unbearably hot and I was in too much pain with aching joints and a stiletto-sharp stabbing between the ribs on my right side. That still bothers me during my relapses. I remember becoming convinced that he’d die – and feeling utterly helpless. We had a finger monitor to check our blood oxygen levels and Himself was low enough that the Dr phoned him every day to ensure he wasn’t ill enough to go to hospital. I recall feeling that we were in the middle of a complicated nightmare and when I look back on it, that whole period seems like a very bad dream.

Thankfully, we gradually started to recover. However, I still slept a lot and would wake up, groggy and hot, feeling weary. It took me nearly another two weeks after Himself had returned to work in April, before I began to feel a bit more like myself. But every so often I would try to do something, only to be engulfed in a terrible sensation – as if I’d run a very long race. I’d be sweating, my body was shaky and weak, the room would start tilting and I’d feel as if I was about to be sick. Tiredness… fatigue… exhaustion… those words don’t begin to describe it. Sometimes, just putting my feet on the floor while getting out of bed brings it on.

However, I was sure it would pass and very gradually, with a few hitches, I seemed to be getting better. It helped that we had a lot of sunshine in June and July. Indeed, by mid-June I was up and about, and although I did have the odd day when I felt terrible, I finally believed I was able to put the whole horrible experience behind me. Then came the curtain-washing incident. I wanted to clean the house thoroughly and decided one lovely sunny morning to wash the curtains. I managed the lounge curtains and the first set in the hall. But getting on a stool to take down the next set – I was hit again with the same symptoms – shakiness, terrible weakness, dizziness and suddenly I was retching. I crawled upstairs and back to bed. And spent days there, only able to stagger to the adjacent toilet when I had to.

And that has set the pattern ever since. I have intervals when I begin to feel a bit better, but the minute I try to do a little bit more, particularly writing – I am once more felled by incapacitating fatigue. It also blankets my emotions. I’m not upset, or sad when I’m bedridden – and I certainly can’t cry, as I don’t have the energy. I call it ‘zombie mode’. I was also coping with my hair coming out in handfuls. Thankfully that’s now stopped and I’m grateful that my hair used to be really thick, as I’ve lost about half of it. Everyone assures me that it will grow back. Additionally, I suffered badly with eczema across my back, itching terribly during the night sweats that still plague me, even when I’m not in the middle of a relapse.

That depressing routine – of starting to feel a little bit better, before suddenly finding I was overwhelmed by exhaustion – has laid waste to my life. I can’t even reliably empty the dishwasher, or clean the bathroom sink. Small bits of writing can only be done on very, very good days, and there aren’t many of those. I often cannot shower or get dressed and putting on make-up is a distant dream. And while everyone around me was unfailingly kind and encouraging – particularly Himself, who has been a superstar throughout – I began to increasingly feel that this was all that lay ahead of me.

There came a day, just after last relapse when I reached the bottom. I was in despair. Before I got sick, I’d had a wonderful life as a writer and teacher – a life that I’d worked hard to achieve. And now, it seemed to be lying in ashes at my feet. I knew I’d much to be grateful for. Unlike many Long Covid sufferers, I’m not in chronic pain and I don’t suffer the terrible breathlessness that afflicted Himself when he was ill. I’ve a wonderful, supportive husband, who is unfailingly nurturing and kind. But still… this seemed a terrible way to have to spend the rest of my life. I was taking vitamins and supplements, trying to be mindful of my energy – and yet, during August I suffered yet another relapse. This one stretched on for fourteen days and when I finally felt well enough to get up again, I was desperate not to end up in zombie mode again, too tired to think or feel. My previous efforts to find information online hadn’t amounted to much more than some vague advice, which hadn’t been all that useful.

And as if in answer to my prayers – the following day, that’s what happened. A major breakthrough. I’ll talk more about that in my next article – though I can’t promise when I’ll post it. In the meantime, I’m so very grateful for those of you who continue to visit and like and comment whenever I summon the energy to publish a review – thank you!