Like millions of people around the world, I contracted Covid-19 before the vaccine programme had time to be rolled out – indeed, I caught it two days after having my first jab, which meant it wasn’t remotely helpful. And like a distressingly large percentage of those millions – I suddenly found my life sliding to a stop in the aftermath of the disease as I was besieged by a succession of symptoms, one in particular being life-altering.
Each person’s experience with the disease has varied widely – there are over 200 symptoms caused by Long Covid. And particularly when I first became ill, finding reliable advice on how to best cope with the illness was difficult. While my doctor’s surgery has been as helpful as they can – and I’ve never encountered anything but kindness and complete acceptance of my version of events from everyone there – they often weren’t able to help. I still remain on the waiting list for the local Long Covid clinic.
So whenever I was sufficiently fit, I logged my ongoing progress on my blog to give folks an inkling as to why I’d gone silent. And now that I think I have mostly recovered from all the major symptoms, I want to sum up my experience and explain what happened and what helped in the hope that another desperate soul trawling the internet, looking for something – anything – that could offer answers for what has befallen them might find some of it useful. So I will be offering up details about myself that I wouldn’t usually reveal. Please treat the information with respect in any comments.
Firstly, I’m a British, white, middle-class woman in my mid-sixties, who is reasonably active and before March 2021, I led a busy, happy life as a writer and Creative Writing tutor. I’ve no underlying health issues, other than mild hypertension which is controlled by a low dose of prescription medication. I caught the Kent strain of Covid from my husband, a train driver, who went down with it when it swept through the train crew at his depot, leaving four people hospitalised and one of them dead. We both went down with the illness hard, though in completely different ways. Himself had a hacking cough and struggled to breathe, and given that he has severe sleep apnea and needs a mask, he found the only way to get any relief was to remain upright. So he camped in the lounge swathed in blankets with the fire full on for four days. Whereas I was running a temperature and couldn’t bear to be anywhere so hot and although I had aching limbs and a sore head, I was overwhelmingly exhausted and just wanted to sleep – often for over ten hours and once for eighteen hours straight. On several occasions I staggered downstairs to make sure he was still alive – and I know that he also checked on me. His blood oxygen levels dropped worryingly low and so he had phone consultations with the local surgery for several days.
However, we both recovered. Indeed, Himself made it back to work impressively quickly despite my concerns that he was pushing himself too hard. Whereas I remained feeling very washed out. On one sunny day, I decided to wash the curtains – and ended up back in bed. In fact, it seemed if ever I tried to do something more than the bare minimum – I’d end up once more engulfed in a terrible tiredness that left me shaking and retching, unable to stand, unable to even think. And increasingly I was confined to bed. By the middle of April I had to face the fact that I wasn’t making a clean recovery and had been stuck with Long Covid. I’ll list the symptoms I encountered below, what I did to try and deal with them and whether it worked. Over the last 18 months, I’ve had:-
• Bladder problems. This surfaced during the initial illness, but continued recurring during my relapses, resulting in occasional accidents. Not only was this distressing, but always occurred when I wasn’t very well, anyway which just made me feel even worse.
My solution: Once I realised that this was an issue, I resorted to the advice given me by my lovely Health Visitor half a lifetime ago, after having had a breech birth. Every time I turned a tap on, I contracted my bladder for a slow count of 5. And every time I went to the toilet, I’d attempt to stop my urine flow. Gradually, my control increased until it was no longer a problem – although I was interested to note that whenever I was in the grip of a relapse, I couldn’t stop my urine flow. So the two were definitely connected.
• Digestive problems. I lost my appetite during Covid-19 and only ate when my stomach starting hurting through hunger. For a long time afterwards, my appetite was depressed. I’m sure that this was also because I wasn’t doing very much. But I did discover that certain foods caused bloating, wind and tummy upsets. Over time most of the discomfort and upsets have eased, except when I try eating onions.
My solution: Taking digestive medication did ease the symptoms, but I also avoided eating foods that caused problems for a while, until I felt better. Though I’ll leave it a bit longer before trying with onions again, as the resultant pain and stomach upset frankly isn’t worth it.
• Loss of smell. Like many sufferers, I lost my sense of smell. Though as I’ve the nose of a bloodhound and during the worst of my relapses I was unable to shower or wash for days at a time – it’s one symptom that I recall feeling quite grateful about. It came back slowly over several months, until one day in June 2021 I suddenly realised I could smell the Marmite on my toast. It’s the only symptom that didn’t bother me overmuch at the time and when I reached the stage when I’d have started to mind about it – it was already returning.
• Hair Loss. I began to notice my hair coming out in handfuls sometime in June 2021, especially when brushing or washing it. I’ve always had a good head of hair and I found this symptom particularly devastating. While I was lucky not to have any bald patches, it was noticeably thinner. It had stopped falling out by October 2021, by which time I’d lost between a quarter and half my hair. When it grew back, the new hair was curly, whereas my original hair was straight, which meant that any style quickly became a tousled mess.
My solution: I recently went to the hairdresser and asked her to cut it as short as she could in a style that suits me. Which she did – and I’m a great deal happier. I just could not get used to looking in the mirror after a lifetime of seeing straight hair – and being confronted by those stray curls sticking out in all directions. While my hair was falling out, I was careful when washing it and didn’t towel-dry it or roughly handle it, but other than that – I didn’t find anything that could prevent it. However, everyone told me that it would stop falling out and eventually grow back and they were proved correct.
• Difficulty walking and loss of balance. My mobility was badly compromised right from the start in that I simply didn’t have the energy to move quickly. I’ve always been the sort of person who strides around the place and runs up and down the stairs, so this took some getting used to. However, after a relapse in April I found that I began to struggle with balance problems, too.
My solution: I bought a folding walking stick that I kept in my handbag, despite hating the dratted thing. I had friends who complained of suddenly being invisible once they reached a certain age, something I hadn’t been aware of. But once I was walking slowly and using a stick – I simply became an obstacle that people swished past. Fortunately, we live in a crescent, so I was able to walk around it using the stick whenever I felt well enough. I didn’t need the stick inside the house – but that’s because it’s a small house and I automatically moved from handhold to handhold. In October 2021, I started seeing a reflexologist as my progress seemed stuck. And within three weeks of seeing her, I was able to walk again without the stick. I didn’t regain my former walking speed to enable me to keep up with the family until the beginning of September 2022. Up to that point, everyone had to slow down for me.
• Depression and anxiety. This was a terrible time. We’d both been very ill and I was massively incapacitated, to the extent that Himself became my carer. I could – on good days – shower and dress myself, but that was it. And thank goodness I never reached the stage when I needed help feeding myself or using the toilet, but it was a close-run thing on occasions. Going out or travelling was a non-starter – I could scarcely make it to the car at times when I needed to attend a doctor’s appointment. Worse, no one could tell me when, or if, this would end. I come from a long-lived family – the thought of living like a frail ninety-something for the rest of my years was a terrible prospect. We also lost my lovely father-in-law in the middle of all this and my mother-in-law, suffering from dementia, had to go into a home. You won’t be surprised that I struggled with my mental health.
My solution: The NHS Time-to-Talk scheme was an enormous help. I had ten sessions with a kind person on the end of the phone, on whom I poured out my fears and anxieties. She suggested I try meditation and my son told me about an app called Headspace, which was excellent at teaching me the basic techniques for focusing on my breath. I have since also found other free meditation apps. It helped me to keep in the moment and stop thinking too much about the future – I just had to get through each day at a time, the best way I could. I think it also massively helped that I have a faith and prayed for strength to deal with what was happening. And the fact that I’m a certain age was also a positive factor, as by now I know my own strengths and weaknesses, both physically and emotionally. I also took strength from my family – my sisters were both tremendously helpful. My middle sister ensured I had any medications that I needed, while I was able to talk through much of my feelings with my younger sister, who is a wellness coach, which was another huge help. Taking as much control as I could in dealing with my symptoms was helpful in empowering me to feel less like a victim, as I learnt to cope with the up and down nature of the illness and better understand what was happening to me. I am an avid reader, and that was also a great lifeline. There were times when I was too tired to watch TV, but I could listen to an audiobook and, when I felt better, read a lovely escapist tale on my trusty Kindle. It also helped that Himself was marvellous – endlessly patient and kind, while he was also dealing with his own heartbreak at what was happening to us.
• Brain Fog. And yes… I’m here to tell you it’s a real thing. I was left with my mental faculties badly impaired. I write novels and soon after the initial illness, I sat down at the computer and tried to resume my current book – and just… couldn’t. It was impossible. I couldn’t even think of the right words to use. And in groping for the words, I lost track of what the character was actually trying to say, or even who was saying it. For the first time in my life, I was staring at the computer screen and completely stuck. I tried not to panic about losing my ability to write – and I’m not talking about book reviews, as I can pretty much produce one of those in my sleep. I’m talking about my creative writing.
My mental confusion wasn’t confined to my writing – I’d break off halfway through a conversation, because I lost the thread of what I was trying to say. I’ve always been a chatty person, full of opinions on everything. But partly due to the chronic exhaustion that robbed me of my mental energy, and partly because I was unable to focus, anyway, I became a lot quieter. Indeed, once I began recovering, Himself initially found it quite difficult to get used to the louder, more opinionated version, as he’d had over a year with the quieter model.
My solution: Whenever I felt well enough, I would do wordsearches, sudoku puzzles, TV quizzes, computer brainteasers, word games with the family… anything to stretch my brain. It got worse before it got better, but I am now sufficiently recovered that I don’t immediately notice any lack, except that I don’t possess the mental stamina I used to have. I cannot write for longer than three hours before feeling really tired, though I’m hoping that on regaining my fitness, it will improve, too.
Once I started recovering my mental stamina, soon after I started my reflexology treatment in October 2021, I began editing two other books in the same series as my work-in-progress. It took a while, as there were long periods when I wasn’t well enough to even open up the computer. But eventually, I worked my way through them and finally, in June this year, I managed to complete the chapter that I’d started back in March last year, before I went down with Covid-19. That felt like a very big win.
• Eczema. I have had occasional problems with this itchy skin disorder when particularly stressed. But it started up in the middle of the initial illness and from then on, every single time I had a relapse – back it would come. Right between my shoulder blades.
My solution: A variety of skin creams. I’d find that one would keep the itching down until it didn’t and we’d switch to another one. I went on a completely sugar-free diet in an attempt to alleviate the spells of exhaustion and accidentally discovered that once I stopped eating any processed sugar, the eczema dramatically improved.
• Swollen thyroid and lymph glands. I’d been aware of pressure on my throat soon after the initial illness – and when I’d start to get exhausted, it would get worse often making me feel nauseous. My lymph glands were also swollen, particularly on the right side to the extent that if I stretched my neck, the lump was visible. They were also very tender and downright painful if touched. When I reported this to the doctor, I was sent for scans, which revealed that I’d got nodules on my thyroid and that my lymph glands were badly deformed. I’ve read that Covid-19 seems to attack specific areas of the body – and I think it was my endocrine system that got hammered.
My solution: For a very long time, there wasn’t anything I seemed to be able to do regarding these symptoms. Although I learnt to pay attention to the throbbing discomfort in my neck – it was a useful indicator that I was doing too much and needed to rest. The lymph glands finally shrank back to normal in September this year, after a course of antibiotics for another symptom.
• Persistent chest and upper arm pain. While I didn’t have any breathing problems, during the initial illness, my ribcage was extremely sore with sharp, stabbing pains, especially on the right side. And while the pain cleared up on the left, it continued on the right to the extent that it was months before I was able to wear a bra and I couldn’t lie on my right side in bed as the pain would wake me up.
My solution: I did find that ibuprofen would relieve it when it got painful enough to restrict my movement as I became more active, but as my active periods were interspersed by long periods lying in bed, it wasn’t too much of an issue until I began to fully recover. At that stage, I was referred to the Breast Clinic to ensure the pain wasn’t an indicator of something more nasty. Fortunately, all the scans came back clear, although I found the examinations extremely painful. And I continued to take painkillers when necessary for the pain until it finally eased away in August of this year, which has been a huge relief.
• Night sweats. During the initial illness, I’d been sweating heavily with my high temperature, but the night sweats continued afterwards. I’d put up with this particular misery during the menopause, so wasn’t best pleased when it returned.
My solution: Before I contracted Covid-19, I was someone who very much felt the cold, so I had an electric blanket and thermal nightwear. I gradually realised, while struggling with overheating, that my whole metabolism had altered – I now no longer get so cold. So I got rid of all the extra blankets, bought pure cotton nightshirts to wear and while the sweats continued, particularly during a relapse, at least I was a tad more comfortable.
• Insomnia. This was grim. I’ve struggled to go to bed at a reasonable time for years – but was also aware that trying to regain my energy levels wouldn’t work if I couldn’t get a good night’s sleep. And while I’m sure the lack of activity was an issue, there was no doubt that when I was unwell, getting to sleep was a nightmare. And if I didn’t, then I could very easily find myself still wide awake at 6 am, and dropping off to sleep just as Himself was surfacing and then sleeping the day away. This clearly wasn’t ideal on any level, so I tried to address the situation. This was one of the biggest ongoing struggles throughout my illness and while it’s improved, I still need to work more on it. These days, I average between five and six hours a night, which isn’t anything like good enough. But at least I don’t battle to fall asleep in the way that I used to.
My solution: To try and help address my sleep issues, my lovely son bought me an oura ring, which is specifically designed to give data on sleep and provide feedback to help change behaviours. It’s been a boon, as I can monitor the quality of my sleep and immediately see whether various strategies are working. I also began switching off screens half an hour before going to bed and reading or listening to a story in low light levels to help wind down, along with a night-time meditation. I did try using Sleepcasts, which my son swears by, and are featured on Headspace. These are descriptions of a particular place, ranging from rain forests to libraries, narrated in a soothing voice. They didn’t work for me, but I mention them because Robbie is a huge fan. What did work is listening to an audiobook on my phone, tucked under the pillow so it doesn’t disturb Himself. I put it on a sleep timer and these days, I’m usually asleep before the half an hour is up.
• Tinnitus. I’ve suffered with some tinnitus ever since I burst my eardrum in my 30s. But after going down with Covid-19, this was on a completely different scale. The right ear was far worse than the left and it manifests in a high-pitched squeal. During the day, I was largely able to block it out, except when lying flat in bed, too tired to do anything except stare at the ceiling. That wasn’t fun on any level. And it certainly made getting to sleep more of a challenge. This is the one symptom that hasn’t eased up much, despite my recovery. Fortunately, I’m now well enough to write and frankly – the building could fall down around me and I probably wouldn’t notice. For which I’m very grateful, as it allows me to blank out the ringing in my ears.
My solution: The meditation helps. I have also discovered that drinking too much caffeine aggravates it, so I restrict my intake to 3 small cups a day and all before lunchtime, so I don’t compromise getting to sleep. But listening to a gripping story on an audiobook allows me to zone it out the noise at night so I can sleep.
• Post-Viral Fatigue. This is the single symptom that absolutely felled me. Fatigue… exhaustion… tiredness… there needs to be another word to describe it, because it’s unlike any other type of tiredness I’ve ever experienced. It’s a malaise that left me shaking, unable to stand, feeling sick and giddy with such tiredness that even my bones ached. It wasn’t just physical. It also left me too tired to think, or even care at all much. I’d be alright for a few days, or as much as a week, sometimes. Then I’d wake up, put my foot to the floor – and it would hit me with a sickening wave and I knew that I’d be spending the rest of the day in bed, too tired to do much of anything. The worst relapse was in August 2021 when I was bedridden for fourteen days in a row. And afterwards, I found I’d lost much of the progress I’d already made, so I was left far more compromised. In fact, I still haven’t managed to drive to Chichester and back since then, which I’d done in June to take Himself to his first covid vaccination. This single symptom laid waste to my life – I was unable to cook, or clean and going shopping was a distant dream for months and months. I’ve already mentioned that I lost the ability to write for a very long time. The hardest part was not knowing if I’d ever get better.
But I had a couple of huge advantages – while I was dealing with a range of unpleasant symptoms, most of the time I wasn’t in pain. I don’t underestimate what a lucky break that was. And Himself was a superstar, ever-thoughtful, kind and tireless in keeping everything going. So that gave me the space and determination to try to take control of what was happening to me.
My solution: I got hold of a book – Classic Pacing: For a Better Life with ME by Ingebjørg Midsem Dahl, which gave me a range of coping strategies in order to deal with my new life. The first was to accurately gauge how much energy I had and then draw up a timetable so that I ensured my daily activities didn’t outstrip my available energy. When I started, I was shocked to see that my available energy was only running at 20% of what it should be. It took a while to get the balance right, but I believe the days, weeks and months that I put in trying to keep within my energy envelope allowed me to heal.
I also started taking a number of supplements – an iron tonic, vitamin D, vitamin C, B12, and a liquid calcium drink. I hasten to add that I didn’t take all these together, but spaced them out appropriately throughout the day. I also tried probiotics, but they simply don’t agree with me so I discontinued with them, though I’m aware that they have helped quite a lot of Long Covid sufferers. I also paid attention to what I ate. My appetite wasn’t large, but I wanted to ensure that everything I consumed would be helping to build me up – so the first thing I did was to eliminate all processed sugar from my diet. I added turmeric tea, which I now love – and I have tahini on toast in the mornings. I’ve been surprised at some of the side effects from not eating sugar. My lower back pain, which should have been giving me constant grief given how long I’ve spent in bed, has hardly grumbled at all. And the pain I was having in my finger joints and wrists has disappeared. I’ve noticed that I’ve less wrinkles around my mouth and eyes, too. While obviously I’ll have the occasional treat for birthdays and Christmas – there’s no way I’m going back to having my twice-weekly sticky bun. I’m eating a lot of salads and as we’re vegetarians, we eat a lot of veg anyway.
Another recommendation was to make life as easy as possible – so we ordered a bath stool so I was sitting down in the shower, which I still use as it makes the whole process far less tiring. And there are still days when staggering to the bathroom to have a shower is a big deal.
This wasn’t the only useful book I got hold of – the other one was The Long Covid Self Help Guide published by the specialists at the Oxford Long Covid clinic, which I found really helpful in rebalancing my energy versus activity output. I strongly recommend this book for anyone battling with Long Covid and the book on pacing for others dealing with Post-Viral Fatigue. Other than that, it was a question of taking each day at a time and trying to stay as calm and positive as possible – I was shocked at just how much energy negative emotions take once I became well enough for my fury and sadness to surface at having lost such a chunk of my life. If I am getting tired, a fifteen-minute meditation is a brilliant way of resting as it’s a super recharge, helping both mind and body. Others have also found yoga to be similarly helpful.
I am also very lucky to have found an excellent reflexologist, who has certainly helped. My progress stalled last September/October and within a couple of weeks of seeing Laura, a holistic healer who runs Sole to Soul, several major symptoms shifted and improved. I don’t think I’d be where I am now without her intervention.
I am now on the road to recovery, though I still have a way to go. Overall, I put on a stone in weight and given just how inactive I’ve been and my age, it could have been a lot worse. However, I’m keen to lose it. Partly because there is a huge chunk of my wardrobe that I cannot wear and partly because at a time when all my energy is precious – I’m lugging around too many unwanted pounds. I’m now exploring attending a course at the local Leisure Centre specifically for people who wish to recondition their bodies after a significant illness and in the near future, I’ll see if I can get a doctor’s referral. I’m hoping to regain my former fitness so I can reclaim my life. And it’s the least I can do for my wonderful husband and helpmate, who looked after me throughout this terrible time with so much love and tenderness.
• Nasal drip and sore sinuses. I’d never heard of nasal drip before I got covid. But this is where instead of mucus running from your nose, it trickles down the back of your throat. This results in a certain amount of discomfort, a horrid taste in the mouth and bad breath. This symptom surfaced sometime during November 2021, after a minor cold. At first I was pleased, as I thought it would drain my poor sore lymph glands. However, it didn’t. It was only my right nostril that was affected, but as time wore on, the sinuses in the right side of my face became swollen and tender and finally even the top of my head grew sore where the sinus cavities on the top of my head were becoming inflamed. It was dreary – and dragged on from November, throughout the winter and finally events came to a head during this summer.
My solution: I had candling and sinus massages at regular intervals, which kept the symptoms manageable. In between my treatments, I was able to prevent my ear from becoming infected by relieving the pressure using a little battery-operated scalp massager which proved to be a lifesaver. I found it very handy for massaging the drainage points for my sinuses once the tenderness spiked into something sharper.
Finally, in June 2022 after dealing with this for seven months, I woke up to a streaming nose. At first I thought I’d gone down with a cold, but it was just the right nostril that was congested – the left one was completely clear. I coped with it for nearly two months, but there was no sign of it easing. By now my nose was sore and my face felt it was about to fall off every time I bent over – a sure sign that my sinuses were infected. I phoned up the surgery and got an emergency appointment and was immediately put on a course of antibiotics. And within three days of starting the course, it had completely dried up. It took another week or so for my sinuses to calm right down and best of all – my lymph glands also returned to their normal shape. And to all intents and purposes, as I haven’t suffered any form of relapse sending me back to bed since the middle of August – I think I can now say at the beginning of October 2021, my Long Covid is now over.
And I cannot begin to sum up just what a relief it is to be able to type those words. While this was always the outcome I was aiming for – there was a long time when it seemed a distant dream. For those of you struggling in the middle of this slow-motion nightmare, let me offer you light at the end of the tunnel. It is possible to recover from the endless cycle of improvement followed by relapse and there can be a time when the never-ending stream of one grotty symptom after another will ease up. Just don’t give up hope.
Brainfluff 