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

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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!

28 responses »

  1. Oh my gosh, I am shocked at what you’ve been through. I’m glad you found the energy to tell your story, since you are the first person I know to go through this. I’m so sorry, Sarah, and I hope there is a light at the end of the tunnel!

    • Thank you for your kind good wishes, Tammy. And I also very much appreciate your unfailing responses to my posts – I’m very aware it’s a one-sided business right now. But it’s lovely that you go on keeping in touch!

  2. Oh my… I’m so sorry! I didn’t know you were struggling. I fell behind with everything, and I didn’t check here for a while.
    While there’s no “speedy recovery” with long Covid, I do hope that you will make a full recovery, and get to once more enjoy all the things, big or small, that bring joy to your life.

    • Thank you for your lovely good wishes, Joanna:)). I’m very much hoping for a full recovery, too. Though I’m aware it will probably be months away and I’ve got to be patient and careful in the meantime.

      • Take all the time you need! I know how it is when you just want to get back on track and keep going, but I’ve learned that being gentle with yourself is important (and should be guilt-free).

      • Wise words:)). I am making a huge effort not to feel too guilty about what a burden I’m being – that’s an entirely negative emotion and I can’t afford to slide into negativity right now. And given what a superstar Himself is – he doesn’t deserve that on top of everything else he’s dealing with.

  3. Oh my heart absolutely breaks for you. I can’t imagine all that you and himself have gone through and how defeated you must have felt. I’m so so glad to hear you’ve had some kind of breakthrough and I hope that things only improve from here though I know there is no magic button. Many many hugs sent across the pond to you.

    PS – there is a nurse at the hospital who had covid and had a similar issue with her hair. It had been very long and she did cut it to about shoulder length but it is looking gorgeous now and so healthy. I hope the same thing happens with you.

    • Thank you so much Katherine! I’m particularly touched know just how much you’ve got going on right now. And yes – I will be writing more about what has been happening. And you’re also right about there being no magic button.

      Thank you for the reassurance regarding my hair. I’m very happy it isn’t falling out anymore and I’ve had it cut short, but I’m guessing it’s going to take months to regain its former thickness.

  4. Ahoy there matey! I am so glad to have an update from ye and also still so horribly unhappy that covid has impacted yer life so much. The selfish part of me is glad to hear from ye because I have been so worried and consider ye a book friend in me heart. Yer writing this post still showcases yer writing skills as me emotions went on a roller coaster. Then that cliff hanger! I certainly want more of the story and more of yer life when ye have the energy and desire to post more. I am so glad that ye have Himself and yer family. I hope that the worst of the hurricanes are behind ye and that smooth sailing and blue skies be ahead. Arrrr!
    x The Captain

    • Thank you so much Cap for your kind good wishes:)). I will definitely be writing more about what has been going on – but I did find it hard to write. It’s much easier telling stories! I really appreciate your ongoing support and yes… I’ve been missing being able to interact with you, too:)).

  5. Oh Sarah, I don’t know what to say. I knew you were dealing with Long Covid, but I had not idea how it had affected you. Thank you for sharing your story with those of us who have no idea how people are being affected. I will continue to keep you in my prayers and hope that the many doctors and researchers will find a solution to what you are dealing with.

    • Ah, thank you, Carla! I found this all quite hard to write – but I was aware that there aren’t all that many accounts by people in the middle of this. Apart from anything else, I wanted to explain to the folks I’ve been chatting with for years the reason for my disappearances. I really appreciate your prayers and good wishes:)).

  6. Oh my! From your description what happened to you, rather than Long Covid seems a Long Nightmare: I was not aware of this manifestation of the epidemic and it’s so sad to read about your struggles and relapses – but at the same time, in this tale of woe, I can also hear a tale of determination and courage in the face of this relentless “enemy”, which is also heartwarming.
    My very best to you, that the ordeal might end soon and that you might regain your old way of life in no time at all. 🌺

    • Thank you for your lovely good wishes, Maddalena:)). Actually Long Nightmare nicely sums it up! And yes – I find it concerning that this side of the pandemic doesn’t seem to get much coverage. And yet, I know there must be millions of people around the world struggling just as I am.

      And I’m also so very grateful for your continual response and comments to my irregular posts. I’m aware I’m not visiting in return, but it means a great deal to be able to chat:)).

  7. I am so sorry your year has been so rough. I sometimes wonder if my 6 months of hip pain is actually some kind of Covid effect. But I don’t have other symptoms. I empathize with the wondering if you will ever be normal again. I am glad to hear you have a breakthrough and hope you feel much better soon!

    • I wouldn’t be at all surprised if your ongoing hip issues are connected with Covid – it’s a really odd illness in the way it seems to react differently with everyone. I’m sorry it – I know when I was struggling with sciatica, I found it incredibly limiting. But using a TENS machine was a lifesaver – perhaps it might help you? In any case, wishing you better!

    • Thank you, Anne – and yes… I wanted to write about the coping strategies I discovered that maybe can help someone else in my situation. But first, I felt I had to provide some sort of context – and then, of course, I needed to wait until I was well enough to write it:)).

  8. I’m so sorry to hear what a nightmare this has been for you but thank you for sharing your story, Sarah. I’ve been wondering how you were doing but it was hard to imagine since everything to do with Covid seems to be different from person to person. Continuing to send lots of positive thoughts and prayers your way.

    • Thank you, Suzanne:). Yes… I’m glad you found it helpful. I pondered a bit before writing the article, as I’m aware it’s a bit different from what I usually post. But it’s an extraordinary time and perhaps my experiences might help someone else. I appreciate your thoughts and prayers – and your regular visits – thank you!

  9. I’m surprised by people in the comments here who haven’t heard of Long Covid like this. But I guess I listen to more news than others. Long Covid has been discussed here in the States via NPR (National Public Radio, which is similar to BBC.) There’s a great podcast that has discussed it a few times called Short Wave, so you might want to search for those and give them a listen, in case they have ideas or insight you could use. I’m sorry you’re dealing with this. Long Covid is debilitating. It makes me crazy to hear the people who won’t get vaccinated because “covid doesn’t always kill.” But it can pretty much debilitate you if you get it like this. I hope your doctors can help you and that you continue to grow stronger. I’m looking forward to your next post. It was nice to see you in my blog feed today. Hugs.

    • Thank you for your kind good wishes, SJ. I think if you know where to look, there are discussions about Long Covid. But like you – I tend to get really angry when the discussion is allll about who is infected, who has been vaccinated and the death toll. I’d like the Government to release regular figures on who is ill with Long Covid – especially as a lot of younger sufferers are being hit hard by this. I’ll be honest – I’ve been more or less left to sort myself out with this. While I’ve now been referred to the local Long Covid clinic, I’m still waiting for them to get in touch. I suppose they are very, very busy. It’s lovely to touch base with you:)).xx

  10. I haven’t been around much in recent weeks and months so didn’t know you had had Covid and that the after effects have been so awful for you. I’m so sorry to hear how poorly you’ve been and how much you continue to struggle. I really hope that you begin to improve soon. I’m thinking of you and sending love. x

    • Thank you for your kind good wishes, Hayley. I hope you have been managing to keep well – it’s been a tough time for so many folks. Sending love back atcha:).

  11. I am so so sorry to hear this – it sounds like hell. I know we don’t talk much on here or anything, but you’re one of what I think of as my ‘good energy people’. I truly hope you will recover and am sending all my good vibes your way. ❤

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