SUNDAY POST – LIVING WITH LONG COVID #2

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In my previous article, I wrote about the run-up to the crisis that had me in despair, which happened just after my last major relapse in the third week of August. In this Sunday Post, hosted by Kimberly, the Caffeinated Reviewer, I’ll talk about what I discovered when I was well enough to be able to go online and search for more information.

The first couple of times I’d searched, I’d found some rather generic advice and a couple of accounts by other sufferers. But there was nothing specific that I could actually use to help me form any kind of coherent recovery plan. The doctor had organised a blood test, which discovered that I was slightly deficient in vitamin D, which I promptly fixed by ordering the recommended dose of tablets. However, that didn’t appear to make any difference. This time around, my online searching hit the jackpot.

Almost immediately, I came across an article recommending that Long Covid sufferers struggling with chronic fatigue get hold of a book – Classic Pacing: For a Better Life with ME by Ingebjørg Midsem Dahl, which I immediately ordered. I went for the print version, which is a bit of a beast, but I use a bookstand so I’m not holding it and I think it’s by far the better option. There are tables and lists, which are much easier to read on a real page, rather than on an ebook. At long last, I had a measure of the extent of my condition and – even more importantly – a strategy to try and stabilise my symptoms, so that I wasn’t trapped in this miserable pattern of recovery and relapse. The book recommends that I gauge my energy levels, then attempt to operate below my limit to ideally avoid becoming bedridden again.

That said, I was a bit chastened when I realised just how limited my life would be – no more quick trips to the beach for the foreseeable future. But we reckoned it was worth it if it helps my ultimate recovery from Long Covid. It also recommends that I take advantage of any equipment to enable me to rest – like using a bath stool to sit while showering, for example. This has meant I’m able to shower more frequently, which helps my mental health. When I am too weak to shower, most days I can still manage a quick wash while sitting at the sink. I went to the physio to get a set of very gentle exercises I can do lying down, on my good days, to try and stop my body becoming a flabby blob. Though fortunately, so far I haven’t put on any weight. On really good days, I take a walk around the block with Himself, using my walking staff as support to help with my balance issues. I think I’m getting a bit quicker, but a dozing snail could still overtake me with ease.

The other major recommendation was to rest frequently during the day, after each task. This prospect would have left me dismayed – but for the fact that someone online had recommended using meditation. Not only does it assist in resting the mind and body, it also teaches calmness and focus. When I mentioned this to my son, he immediately pointed me towards Headspace, an app I could upload onto my phone. This has been a huge help in helping me rest mindfully, but also to meditate on getting better, keeping positive and being kinder to myself. There are also sleepcasts and meditations to help relax before bedtime, which is important as I have a dysfunctional relationship with sleep that goes back years.

I now keep an activity journal, where I write down what I do every day and give each day a mark out of 10 for my mental and physical state. Himself has been putting these in a graph – I’ve now two months of data, as I’d started keeping the score before my relapse. This is important as Time now feels very odd. Each day runs quite slowly, but when I look back, days and weeks seem to bleed into one another so my perception of what has gone before is completely impaired. And obviously, to aid my recovery I need to understand whether I’m getting better or not, so I need a clear record of what happens on a daily basis.

I no longer make any plans – and this was initially something of a struggle as I’m an inveterate list-maker and each night, I’d work out what the coming day’s tasks would be. But I simply can’t, as I never know how I’ll be feeling. I can have three good days in a row – and the next morning wake up feeling fragile and slightly sick when I move. So it’s best not to add an extra twist of disappointment by then having to put a line through any activities I was looking forward to doing.

I pay close attention to what I eat and drink. Fortunately, I don’t have much of an appetite so I’m not tempted to snack or comfort-eat – but I learnt early on that sugar is not my friend in any form. It makes me tired, depressed and causes joint pain, particularly in my back where I have a dodgy disc, anyway. So no sweets, biscuits, or cakes – I’ve even discovered they put sugar in lots of bread. So it’s sourdough slices for my morning toast and in the evening, there’s plenty of fresh vegetables, often with a side salad, all prepared by Himself. I love my lapsang souchong, but limit myself to two cups a day – and then it’s onto a variety of herbal teas, including peppermint and liquorice; lavender and oat; redbush and turmeric. While I’m aware that caffeine can be inflammatory and it would be ideal to cut it out – there’s a balance. And right now, I reckon I need those two cups of tea in my life.

I need to stay upbeat and positive to get through this – and not just for my sake. Himself has been an absolute trooper throughout – unfailingly kind and nurturing. But I’m very aware that he is under enormous strain, not only holding down an important, safety-critical job, but then coming home and looking after me, while doing all the housework, shopping and cooking. Whenever I’m tempted to feel sorry for myself, I remember that in many ways he has it worse than I do. And whatever the future holds – there isn’t a quick fix ahead of us. I’m banking on being part of the statistical cohort that eventually recovers – I have to believe that. I had a wonderful life before this happened and I want it back. But realistically, I still have months ahead of me – maybe years – whereby I have to focus on pacing myself below what I can do in the hope that gives my body sufficient surplus energy to devote to healing itself. Wish me luck! In the meantime, I’ll try to post updates on my progress and anything I’ve encountered or experienced that might help others in my situation. Thank you so very much for your comments and good wishes – it’s been lovely to reconnect with so many of you. Though please understand that I’m likely to disappear again, as being able to spend any time in front of the computer only happens when I’m feeling at my very best.

I’ve been reading like a fiend during my illness – thank goodness for books, both audio and digital! Without them I’d be gibbering at the moon by now. I lead a very limited life and being able to escape into all sorts of intriguing worlds and adventures has helped to pass the time and keep me entertained. This week I’ve read:-

Assassin’s Bond – Book 3 of the Chains of Honor series by Lindsay Buroker
Yanko and his friends must escape a Turgonian prison and find passage back home before their enemies claim an advantage that could change the world. And not for the good of the Nurian people.

But even more trouble awaits at home. Civil war has broken out, Yanko’s family is in danger, and the man who sent him on his mission has disappeared. If Yanko can’t find Prince Zirabo, he’ll forever remain a criminal and be hunted down by his own people. Worse, his only chance to survive and redeem his honor may be to rely on the one person who’s been trying to kill him since his adventure began.
This next instalment in this entertaining adventure is full of action, incident, quirky amusing characters and laugh-aloud moments. Buroker has become a favourite author of mine over the last few months. I’m so impressed at her ability to tell a cracking story full of tension and emotion and yet still manage to inject real humour throughout.
9/10

The Necropolis Empire: A Twilight Imperium novel by Tim Pratt
Bianca Xing has spent a lifetime on a provincial planet, dreaming of travelling the stars. When her planet is annexed by the Barony of Letnev, Bianca finds herself being taken into custody, told that she’s special – the secret daughter of a brilliant scientist, hidden away on a remote planet for her own safety.

But the truth about Bianca is stranger. There are secrets hidden in her genetic code that could have galaxy altering consequences. Driven by an incredible yearning and assisted by the fearsome Letnev Captain, Dampierre, Bianca must follow her destiny to the end, even if it leads to places that are best left forgotten.
This is a real treat. Pratt’s breezy tone drives this adventure forward with verve and pace which had me really caring for the protagonists. He writes truly nice characters very well, which is harder than he makes it look. Review to follow.
9/10

The Broken Throne – Book 16 of the Schooled in Magic series by Christopher G. Nuttall
The Kingdom of Zangaria has fallen into civil war. On one side, King Randor and his forces, determined to impose his rule over the entire kingdom; on another, the noblemen who want to crush the king; on a third, Princess Alassa and the Levellers.

Caught in the middle, Emily must steer a course between her loyalty to her friend, her duty to people who put their faith in her and her fears for the future. But King Randor has unleashed forces even he may be unable to control…
This is another cracking series that has continued to deliver all sorts of unexpected twists and turns that has me enthralled. This particular episode charts some of the fallout caused by Emily bringing inventions from contemporary Earth to a feudal system driven by magic.
9/10

Battle Ground – Book 17 of the Harry Dresden series by Jim Butcher
Harry has faced terrible odds before. He has a long history of fighting enemies above his weight class. The Red Court of vampires. The fallen angels of the Order of the Blackened Denarius. The Outsiders.

But this time it’s different. A being more powerful and dangerous on an order of magnitude beyond what the world has seen in a millennium is coming. And she’s bringing an army. The Last Titan has declared war on the city of Chicago, and has come to subjugate humanity, obliterating any who stand in her way. Harry’s mission is simple but impossible: Save the city by killing a Titan. And the attempt will change Harry’s life, Chicago, and the mortal world forever.
Don’t pick this one up unless you have read Peace Talks and clearly recall the story or you’ll flounder. The action moves forward from the previous book and Butcher doesn’t hang around. And the title is spot on – the whole book essentially describes an epic battle, from the build-up to the immediate fallout. Review to follow.
8/10

Scorched Heart – Book 4 of the Firebrand series by Helen Harper
My parents were brutally murdered when I was five years old. Their killer has spent the last twenty-five years in prison for his terrible crimes – but I still have unanswered questions. After all, I am the phoenix. When I die, I am reborn in fire and brimstone. It happens again and again and again. I have no idea where my strange ability came from and nobody to ask.

Now another shocking murder has been committed in the small village where my parents died and there is evidence which suggests the killer is supernatural. The crime gives me the perfect reason to return to my childhood home. I can offer my expertise as a Supe Squad detective – and seek the truth behind what I really am. The trouble is that I might not like what I find.
In this, the fourth instalment of this exciting Brit-based urban fantasy featuring Emma, we finally discover the mystery behind the tragedy that has overshadowed her life since she was five. Harper’s pacy plotting and engaging characters have drawn me into this world and I really enjoyed the twisty climax to this tense murder mystery.
9/10

Owl’s Fair – Book 2 The Owl Star Witch series by Leanne Leeds
Once Astra Arden realized her life’s direction had been chosen for her by the goddess Athena, the former witch tracker did her best to adjust. After all, there were destinies you could fight to change, and there were destinies that, when refused, might get you turned into a stone statue for eternity.

When the altruistic Alice Windrow comes to Athena’s Garden for a tarot card reading, the cheerful young woman seems to not have a care in the world. Known throughout the town for her philanthropy funded by a distant relative’s substantial inheritance, she only wishes assurance that the marathon she sponsored will come off without a hitch. The reading takes a turn when Athena’s glowing Star Card flips—showing someone has it in for the innocent Alice. Can Astra and her sisters unravel the plot in time to stop Alice’s murder? Or will the generous girl find that her marathon is officially over—for good?
I’d found some of the reads this week a tad intense – so I went looking for something a bit more lighthearted. And recalled that I’d recently read the first book in this enjoyable urban fantasy series about poor old Astra having to move back home and being tasked to prevent murders before they happen on behalf of the goddess Athene. She even has a talking owl for help – though Archie provides all sorts of problems along the way, too. This enjoyable offering is skilfully plotted, with plenty of twists and tension along with the laughs. Just what I needed!
9/10

Thank you so much for visiting and commenting. I’m very aware that right now, it’s a very one-sided relationship and I don’t know when I’ll be in a position to start to reciprocate. In the meantime, do take care and have a lovely week:).

37 responses »

  1. I am glad ye have Himself and have found a potential path towards recovery. The First Mate is currently running our lives as the derailment of my physical health makes me only have energy to get through the work day and for nothing else. I need the reminders to be nicer to meself and try to focus on the long haul goal of overall improvement. But I do sometimes (well always) feel horrible that he has to pick up the slack. Though having a partner though the pain is a blessing.
    x The Captain

    • Oh, I’m so very sorry to hear that, Cap! And yes… that reminder to keep being kind to yourself is soooo important. I know what you mean about feeling horrible and guilty to be waited on by someone else. Though I agree that it’s a blessing to have a someone like that in our lives! Take care – and thank you for constantly touching base.x

  2. Thank you for sharing this miwth us. I know of other people like you who suffer from long term covid and have now something similar to what you are going through. I think the advices in that book are indeed very clever and hopefully will help your body heal at its own pace in the long term. Hugs!

    • Thank you for the kind good wishes and hugs, Sophie:)). It’s really frightening to realise just how many people out find themselves in similar situations. So finding that book was an incredibly lucky break.

  3. I am holding out hope for you to make a full recovery, and I am glad that you have books to help out along the way.

    Your thoughts on how COVID can be worse than any of us imagined, even when “recovering,” made me feel so much compassion for you and others. And gratitude for health.

    Sending positive energy your way!

    • Thank you for your kind words, Laurel – and the positive energy:)). It’s been a huge tonic to receive such kind good wishes as I’m (hopefully!) starting to be able to reconnect with my book-loving friends online:).

  4. Thanks so much for sharing, Sarah. I will be recommending a lot of this to my friend as she is in the same boat as you. My ordeal with Covid wasn’t as bad as yours but I too struggle with flair ups and lingering symptoms. One that really persists is what I call brain fog. I have a hard time focusing and the smallest things can feel overwhelming. My work has suffered because of this and so has my time being social on the internet. That leads to anxiety and depression. About the sugar…. I will keep that in mind. Had no idea the effects it had. Sending prayers your way for your recovery.

    • I’m very happy if anything that I’ve said has helped in any way. And I’m sorry that you are also still battling, Laura:(. It sounds like you are also suffering with a form of Long Covid, too. I can also strongly relate to your accounts of brain fog – it’s really horrible. I didn’t mention it in either article, but I’ve also been dealing with it, too. To help, I’ve been playing word games and puzzles to help sharpen up again, as well as quiz programmes on TV – and going through braingym exercises, which you can find online. Just 10 minutes a day and not to worry if you lurch to a stop. My current bugbear is not being able to find a word… I feel such a fool! Or putting things down and not recalling where they are – and then sitting down and giving up because I don’t have the energy to go searching. But it is definitely getting better – and since I’ve completely given up sugar, the brain fog has noticeably improved.

  5. I’m glad you have found something which is helping you to recover but sorry it happened at all. I went through my hip thing for the first half of the year and still have twinges so I have just a small sense of your life. It was my life Jan-Apr where I barely was able to leave my bed. I still do my PT exercises twice daily and mostly can do a bunch of normal things. I don’t have much help as my daughter doesn’t drive and has her own issues.

    It’s great that you are enjoying so many great books!

    Anne – Books of My Heart This is my Sunday Post

    • Yes – I recall reading your battles with your hip with great sympathy and I’m delighted that you have made such a strong recovery. But yes… there must be times when you are still struggling. At the very least, you must have lost a lot of muscle tone and strength going for such a long time without much exercise – and that is something I’m a bit worried about. Not that there’s much I can do about it, right now. And yes – entertaining, well-written books have been a constant, ongoing lifeline:). I would be in a very bad place without them…

  6. What a journey you’ve been on, Sarah. I really didn’t understand the extent of your illness until now, I don’t think. The book sounds amazing, and I’m sure that your readers appreciate this message along with the book information. Take care, and I’m sure that sunnier days lie ahead!

    • Thank you for your kind encouragement, Becky:)). Yes – I’ve found the book a lifesaver as it has provided a plausible strategy that I can use to try and get better. At the very least, it has stopped me from feeling so much of a victim – and I think that’s really important. Looking forward to those sunnier days!

  7. I love how you’re handling this horrible long-term disease. It is so easy to get down when you get a chronic disease like this. I have lupus, so I completely understand a lot of what you’re going through (though I will admit that I don’t think I’ve had half the struggle that you’ve been through). I have to applaud the way you’ve taken control back from the disease with tracking and learning. I’m sure you will find a way to live your best life, no matter where your path goes from here. You’re an inspiration to me as I think of my ordeals with lupus. Thank you so much for sharing your story. I’m sure there are many that need to hear positivity when it comes to surviving long-COVID.

    Melanie @ Books of My Heart

    • I’m so very sorry to hear that you are battling with lupus, Melanie! One of the things I regularly give thanks for, is that while there are times when I’m in pain – it doesn’t last all that long. I’m aware that lupus is an extremely painful condition and I know that if I was struggling with a chronic painful condition, I wouldn’t be nearly so positive. But I also know that if I hadn’t tried to get some kind of handle on the steadily worsening situation, where each relapse was more severe and long-lasting than the previous one, then my chances of a full recovery were getting slimmer. And I LOVED my life – writing books is so much fun! As well as wanting to be able to get out and about again with Himself… So I have very powerful reasons for battling to get better. And thank goodness for books – which have given me a chance to fully escape from what’s going while I disappear into a story! We are so lucky to be able to ‘check out’ and spend some time elsewhere – even if it is only in our imaginations:)).

  8. I’m glad you chose to share the details of your journey through this nasty affliction: first because it’s a way of connecting again with you and knowing how you’re faring in this difficult time, and then because I believe that sharing your burden might make it a bit lighter for you. It’s going to be a long road, granted, because Covid seems to have struck with a vengeance in your case, but I’m certain that your choice for a hands-on, proactive stance on your problems is already a great step toward the solution and a full recovery. And you must remember that there is a huge crowd out here cheering you on… 💐

    • Ah… what a lovely way of putting it, Maddalena:)). Thank you so much – I’ll use that visualisation, as sometimes – due to the fact that I’m currently living so very quietly and not getting out hardly at all – I feel a bit cut off from everyone. I just hope that perhaps someone else out there who was at their wits end as to how to tackle this illness, can find my experiences of some help.

    • Thank you for your kind good wishes:)). And I hope that you are keeping well. I’m looking forward to feeling fit enough to be able to catch up with you and everyone else. Have a great week!

      • I shared this with a friend who also has long Covid and he found it very helpful. He had a follow up question if that’s OK, he’s read getting the vaccine can help with symptoms, do you know anything about that?

      • Yes! I looked into this quite closely, as I had my first jab 2 days before I went down with Covid and needed to weigh the pros and cons of having the 2nd jab. Apparently the majority of people who have Long Covid react just the same as everyone else – feel a bit grotty for the first couple of days and then go back to their previous condition. But some 20% actually notice a significant improvement in their illness that takes them forward on the road to recovery. And about 12% feel worse…

        In the end, I decided to go through with it. Partly because I hoped I’d be one of the 20% who significantly improved (though I wasn’t – I was one of the majority who felt rougher for a few days and then went back to where I’d been before); and partly because I am fairly sure Himself and I went down with the Kent strain of the virus. The version that folks are now largely going down with throughout the UK is the Delta version, so I knew there was a chance of getting it again. And if I did – I wanted to be as well protected as possible.

        So those are the risks and benefits as I understand them. Along with the decision that I chose to make and why. I hope that helps your friend:). And I wish him all the best of luck!

  9. I’m so glad you finally have some answers and some solid advice even if it sounds like a long journey. I’m not sure if you have this issue but Will would have leg cramps when he was really feeling bad and was inactive for long periods of time. His physical therapist taught me a stretch that really helps him. Basically he lies down flat with his legs stretched out and relaxed. I put one hand on his ankle and then the other on the ball of his foot and very very gently push his toes towards his knee until there’s a touch of resistance and hold for about 10 seconds and then move to the other foot and repeat a few times. Himself might be able to do something like that if you have leg cramps or leg discomfort. Lots of virtual hugs!

    • Ah – thank you, Katherine! That is a brilliant piece of advice – so far I haven’t had cramp, for which I’m truly grateful. But in the past I have, and I’m aware that these days, jumping out of bed at speed to put my feet on the floor no longer is an option. Given that I’ve no idea how much longer I’m going to be significantly inactive, this is a really useful fix that will be invaluable should I need it.

      I hope that Will continues to progress – I think of you all often and send prayers your way when I am meditating… Hugs coming right back atcha:)).

  10. It’s good to hear that you found some way of coping with the long covid symptoms and hopefully your body repairs itself with the energy you are saving for it. I will continue to think of you and hope that you’ll be around again soon so we can all hear how you’re doing. ❤

    • Thank you, SJ:)). Yes… I think that adopting the Pacing strategy is the way to go with this – I spoke to a Dr yesterday who agreed with me. Though warned that it could take quite a while. Thank you for your good wishes – I’m sure all this positive energy will help:)).

  11. It might not feel like it, but you are doing a lot. When you’re in such a state, everything is a win, and you’re definitely allowed to claim it as such. I know the road to recovery will probably be long, but I keep my fingers crossed that it will be a steady one, and that every now and then, you’ll look back and realize that you’ve already come a long way—even if during your journey it didn’t feel like it.
    All the best, Sarah!

    • Thank you, Joanna. Thank you for your kind concern and encouragement – it means so much! And you’re right – it’s really difficult to be able to monitor any kind of progress as I’m right in the middle of this. Which is why I’m keeping an activity journal and giving each day a number for my physical and mental state and then turning them into a graph every month (actually, that’s yet another chore for Himself…). Each day is so up and down, that without that kind of concrete recording, I just wouldn’t be able to see where the trajectory is going. But I am claiming it as a win that I’ve got a strategy and I’ve been sticking to it. And even though I’m only two months in, I’m also taking it as a win that I haven’t had a relapse since I started:)).

      • I think plans and strategies are important. Sometimes, when things get dire, we can just focus on getting through the next point on the checklist or on the progress already made and worry about the big picture later. In a way, it’s like with writing: no matter your outlines and grand plans for 10-book series, you still take it one written page at a time. 🙂
        And yay for relapses! I’m here for a bit of catch-up, so I hope this upward trend is continuing for you!

      • Thank you, Joanna – and you’re absolutely right. It’s vital to be able to measure my progress more efficiently than just moving from day to day. Otherwise I’m unable to work out which strategy works better.

  12. I just thought about you and looked for your Sunday Post. So sorry to hear how Long Covid is still affecting you. My symptoms are very mild now, but I am still not 100% back to were I was before the infection. But compared to your condition, I am as healthy as one can be. Thank you for the book information. It sounds as if that could help me with another diagnosis I´ve got this week. You are not alone with this, Sarah! I am sending you my positive thoughts and best wishes. You will get well again, no doubt about that. And don´t think about your activity here or in the book blogger community. We are not unfollowing you only because you can´t post or comment back as you used to. Stay strong and go step by step.

    • Thank you, Vi:)). So sorry to hear of your battle with Long Covid – I can very much sympathise that you are not yet back to where you were before the illness struck. It is a horrible feeling! And I’m so glad if the book helps in any way…

      And thank you for your kind reassurance. I became concerned that my input was very one-sided and I hadn’t had the energy to fully explain the situation. Writing those two articles was HARD! But I know folks will now understand – there is such a lovely community here and I feel everyone’s good will and wishes for my recovery. It is such a comfort. In the meantime, I will also pray for your ongoing recovery and hope that you will soon feel more like the person you used to be – I know only too well what a hole is left when you can’t do what you did before…x

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