Long Covid Support Group in Hyndburn

I’ve previously posted about my experience of long covid, since getting ill with the virus back in March 2020. I still have long covid, and have been taking part in a long covid peer support programme pioneered by Brain Health Breakthrough. The programme is now expanding and I’m very pleased to have been asked to co-facilitate this new peer-led support group for people in Hyndburn with long covid, organised by Brain Health Breakthrough, with funding from Hyndburn Community Champions. The programme is free of charge. The first session is this Tuesday 8th June at 1pm on Zoom. To join the programme or find out more email karen@brainhealthbreakthrough.co.uk

There are a number of online support groups for long covid, but this one I have found to be particularly helpful. It’s very much about developing life skills and finding a way forward in a positive direction, as well as an opportunity to share our struggles and support each other. I’ve written in some more detail below about how the programme has helped me through long covid. As well as sharing and discussion, the programme includes a guided meditation each session, a recording of which can also be accessed anytime.

The long covid peer support programme with Brain Health Breakthrough has helped me to feel calmer and sleep better. The meditations are something positive I can do when I feel unwell or worried, which feels empowering. There is a balance of acknowledging that our bodies have been dealing with something very challenging which will take time to heal, alongside reminding us we can shift our focus from panic and frustration onto gratitude for our bodies working so hard to fight covid and recover, and onto the positive progress we have already made.

Thanking my body for all its hard work feels transformative. It reminds me that I have the power to recover. It’s a form of self-love and self-care that feels more than relaxing. It feels nurturing. Covid was a terrifying experience and it can still be scary having long covid symptoms and wondering if and when I’ll be well again. The meditations and the support Karen offers in the group feel like being held in a safe space. 

As well as the mutual support, having access to the recorded meditations is reassuring as I always have something to turn to when I’m struggling with symptoms. The meditations help me tune into my body’s needs, and enable to me to be more aware of how much I need to pace myself. This has helped to reduce my relapses and become more aware of warning signs in my body that remind me I need to slow down, improve my self-care, or seek further medical advice before symptoms get more severe.

The deep relaxation I feel during the meditations is sometimes more refreshing than sleep, and has been especially important to me at times when symptoms have been scary and made me feel tense. I have more energy and breathe more easily when I feel properly relaxed. I have taken part in this programme alongside seeking advice and treatment from my doctor, and the combination has really helped me to gradually improve my symptoms, to feel positive but also patient about my ability to recover.

Online peer support has really helped me to cope with long covid, but I especially value this programme as it helps to make me feel more positive. Listening to others talking about their symptoms can be helpful as it reminds us we are not alone, and it’s important to have a space where we can share our struggles and fears, but sometimes it can also lead to feeling more frightened and despairing if it’s not followed by a more positive focus. This programme is different because as well as peer support, the meditations and the focus on listening to our bodies in order to improve self-care is very positive and this positive state of mind helps me to feel stronger and more well. I have gained an approach to self-care that is a tool for life.

Click HERE TO WATCH a video on Brain Health Breakthrough’s Facebook page of people with long covid (including myself) talking about how the programme has helped.

Click on this link to find out more about Brain Health Breakthrough’s Long Covid Peer Support Programme

Coping with Covid (long tail symptoms)

I’ve been living with long-tail covid symptoms for three and a half months now. I’d like to share some of the things that have been helpful to me so far. Not miracle cures, obviously, but supplements, herbs, strategies and perspectives that helped to relieve symptoms, or made it easier to cope. This isn’t medical advice, but sharing my own experience, and of course, everyone is different and may have different medical needs. I’ve been very cautious, especially in the early days, as this was a new and unknown virus. I stuck to simple strategies, and because I have no thyroid, and am on thyroxine, I have to watch out for drug interactions. Bearing that in mind, here are some of the things I found useful, that are generally speaking, safe (but do your own research/get professional advice!)

Vitamin C with zinc

I have been using the effervescent form as it was easier to take, felt refreshing and easy to absorb. I’ve not experimented with mega dosing. Very high doses of Vitamin C can cause diarrhoea. Also, I didn’t want to overdose on zinc. I’ve been taking 1000mg Vit C with 15mg zinc. Occasionally I had two in a day. I didn’t start taking this until several weeks in. It might have been useful to start sooner! I didn’t get a dramatic improvement in symptoms but I definitely felt a difference in my energy levels.

Vitamin D

I was diagnosed deficient in Vitamin D before I got ill, so I’ve been taking a bit of a higher dose than the average recommended dose. It is possible to overdose on Vitamin D, although a lot of people in the UK climate can have a lack of it. Again, I like the effervescent one. I’ve also been sitting out in the sun to top up my vitamin D, and felt better for it, although there were some days when it felt too uncomfortable to get hot. Go with your instincts on this one.

Co-enzyme Q10

This is a supplement that is a naturally occurring nutrient. It’s particularly needed by body systems that use a lot of energy, such as the circulatory system and immune system. Older people tend to have lower levels of it in our bodies than young people. I’ve used it before for palpitations and fatigue. I take up to 100mg a day. It can be a bit pricey, but you can sometimes find special offers.

Hawthorn (Crataegus)

I’m taking hawthorn tincture, but you can also by tablets and tea, or of course pick your own flowers and berries, if you’re clear on identification. It’s a safe remedy and one I think of as a nourishing herb. It’s beneficial to the heart and blood vessels. It helps to balance blood pressure, and in my former life as a medical herbalist I had great success using it to reduce high blood pressure. It helps to improve the heart’s pumping efficiency, and the health of the blood vessels, so there is less strain on the system. Since taking it my heart rate and blood pressure have normalised and I’m having significantly fewer palpitations. It’s also gently relaxing.

Thyme

Thyme is antibacterial and antispasmodic so it helps to prevent and treat secondary bacterial infections and relaxes the breathing. I’ve not had a miracle cure of breathlessness with this, but it’s certainly helped, and after two course of antibiotics I kept taking it to prevent recurrence. The dried herb makes a surprisingly nice tea, with a bit of honey. And I use it lots in cooking. There is also thyme product called Bronchostop, available as pastilles or syrup, sold in pharmacies.

Astragalus

Astragalus is an immune supporting herb that is antiviral and also a heart tonic. I took it for a while with the hawthorn, and my heart symptoms are significantly better.

Lifestyle

Like many writers, I’m a hardened caffeine addict. I normally drink tons of coffee with no ill effect, but when my heart rate was over 100 I figured it was a bit much to stimulate it some more. I’ve cut down significantly. At the worst point I stopped drinking it altogether and my heart was thankful.

I’ve slowed down. Obviously the illness has forced me to rest, and my heart and lung symptoms have forced me to slow down when I’m active, but I’ve learned to move around slowly in general even when my body isn’t screaming at me and it’s really helped. If I do everything at a slower pace, I’m less likely to get out of breath, less likely to strain my heart or lungs. I try not to carry anything heavy, rest in between any activity, and even washing up is done in small batches. Lots of talking can also be tiring for your lungs and heart. When you’re on the mend or having a good day, it’s important to remember to pace yourself, as your body is still trying to heal the tissue damage cause by the covid. Patience is key.

Positioning can help make breathing more comfortable. Propping up with extra pillows at night has helped me. Also varied positions such as lying flat on my side with a pillow under my hip, or turning on my front for a short time has helped my lungs to drain more easily and relieved the feeling of being constricted. When too much activity makes me out of breathe I rest. When lying down for too long make me feel like my lungs are congested or stagnating, I get up and gently move around. I’ve felt more comfortable breathing lying on my left side than my right, possibly due to my heart being affected. Other people have preferred the opposite. When my heart rate was very fast, lying down flat helped the most. Careful experimentation, instinct and observation soon reveals what is helpful.

As I already have asthma, I’m used to the experience of feeling out of breath. I’ve been able to stay calm and relax as much as possible, rather than panic. Your body used less energy when you’re relaxed. It’s hard not to panic and start gasping when your breathing feels constricted, but counterintuitively it’s easier to breathe if you accept this is where your body is at, and focus on relaxed unhurried breathing as far as possible. In the acute stages, it can be impossible to avoid panting, but again, staying calm and relaxed means your body wastes less precious oxygen. This leads on to my next useful tip- equipment.

An oximeter is handy for monitoring oxygen levels and pulse. They are cheaply available online, and while not as accurate as hospital equipment, do give you an indication of how your body is coping. Some people don’t realise their oxygen is low until they collapse. Conversely, some people, like me, feel out of breath but our oxygen is ok. The oximeter can give some peace of mind and a guide on when you really need to rest. I have a peak flow meter which is a simple inexpensive device that you blow into, to measure how hard and fast you can breathe out. Inflammation, such as asthma, or other lung diseases can cause a low peak flow as the airways are narrowed. It’s a good way of keeping track of your lung health, and distinguishing between a physical problem and a panic attack.

My peak flow meter

Distraction and relaxation. Distraction really helps when symptoms are scary. Easy reads, audio books, relaxing mindless TV or game apps, sitting out in nature, afternoon naps, whatever. Or sometimes it’s a case of peace and quiet, meditation, visualisation. My body has been working very hard these past few months, even when I’m lying down. It’s been fighting a virus unlike anything it’s met before. All my systems were on high alert. Fast heart rate, high temperature, high blood pressure, fighting to breathe, fighting off the virus, clearing out the toxins, dealing with lack of sleep due to symptoms, the fear, the frustration. All these things take a lot of energy. Modern culture is so driven and work-orientated, and given to expecting quick cures or relief so we can get back to being busy. We have lost the art of convalescence. All the ME and chronic fatigue community are saying REST don’t push yourselves, to avoid a more chronic situation. People who’ve gone back to work too early, or tried to do too much too soon have had relapses, sometimes severely. It’s not lazy or selfish or unhealthy to rest until you feel 100%. A person dealing with or recovering from covid has been on the battlefield internally. It’s not just ok to rest and recover for as long as you need, it’s really important and entirely necessary. Take care of yourselves x

Day 99 in the Covid House

Day 99 in the covid household. Overall I’m slowly improving, but still experiencing new symptoms, even at this stage. Also, I’m no longer having periods of being completely symptom-free as I did in the earlier stages. My breathlessness has become less acute, but more chronic—continuous but less dramatic. I have to walk more slowly than I did a few weeks ago. And I’m having days where I don’t feel up to a walk. When I say walk, I mean to the end of the road and back, which would normally take 10 minutes, and now takes at least double that. I have mild asthma so it’s probably in part an aggravation of that, but the days of breathing difficulties tend to coincide with other covid symptoms. For example, last week’s new symptom was covid eyes. It’s red and sore like conjunctivitis but without any pus or crustiness. My eyes have felt dry and stinging, then watered excessively for hours. One eye had a puffy jelly-like conjunctiva, like I get with hay fever, but minus the itching. Just before it comes on, my vision goes a bit blurry. Over the same period my peak flow (a measured of how hard and fast you can breathe out, used to monitor asthma) dropped significantly, and whilst I wasn’t panting like I had in the earlier weeks, I had to cut short phone calls as it was hard work to talk.

My covid eye

My breathing is improving again, along with the eye symptoms. In the last few weeks I developed sudden attacks of muscle weakness and drowsiness. It feels like extreme fatigue, but comes on out of the blue. It feels hard to hold myself up, and I even have to consciously make an effort to breathe. It seems neurological. Other people with long-tail covid have reported the same issue, and it is listed as a symptom on the covid symptom tracker app (part of the King’s College covid research). Given all this, you’d think I wasn’t getting better but when I look back, symptoms were much more acute. My resting heart rate of over 100 has come down. I’m rarely having palpitations now. Maybe once or twice a day. My blood pressure is back to normal. I do still cough, but it’s more like an asthma cough, a bit dry, or thick, not the harsh hacking cough of the early days. Occasionally my lungs still crackle, but less often, and less severely. I get a full night’s sleep more often, rather than lying awake with a racing heart or struggling to breathe. Walking into town, or going shopping are absolutely out of the question. My house is a horrendous tip (worse than usual!).

However I feel hopeful. Being in a couple of covid support groups has made a huge difference to my sense of empowerment and strength. We share useful resources, articles, research, and personal experience and tips for managing symptoms, and of course, empathy. People a couple of weeks ahead of me in the covid timeline are reporting that they feel better. In my next blog post I’ll share some things I’ve found helpful in managing symptoms.

Getting COVID off my chest—a testimonial

I’ve been holding back from sharing this because I don’t want to frighten people who are already scared. When you’re infected with a dangerous illness, your best defence in terms of attitude is calm courage. That’s how I’ve dealt with the last eight weeks of my life. However, it’s got to a point where I think I need to say this because I’m despairing of the mentality I’m seeing from a lot of people around me. I have a degree in science and what time I have spent on social media since the lockdown has largely been spent explaining science to people, in some cases because they don’t trust ‘the experts’ but they might trust a scientist they know, especially one who is currently ill with covid. Being a scientist, I’m not given to hysterical headlines but it’s got to a point where I have to speak out, not about the science this time, but about my personal experience in the hope it might contribute to saving some lives. I usually tend not to share everything when I’m dealing with illness, as personally what works for me is creating that calm space within, rather than giving a voice to my fears. This is written, not for those who are already worried, but for those who think covid is not really that bad, it’s less widespread than we’re told, or even that it’s a hoax. Also for those who are more concerned about personal freedom than survival, and those who think they aren’t vulnerable. There seems to be mainly two groups of people protesting the lockdown measures: some of the privileged who have never known any real infringement on their freedom before, and some of the people who have already suffered much at the hands of government policy who see this as the final nail in the coffin of their freedom.

What I want to do here is describe my experience over the last eight weeks, to those who are struggling to come to terms with lockdown, who think that it’s worth risking their lives, or those of other people, because they haven’t personally experienced or witnessed the reality of covid. My experience has not been an extreme one, relatively speaking. I’ve had what would probably be classed as a ‘moderate’ case. Whilst the severe cases are distressing enough to motivate many people, there may be those who think that won’t happen to them, that they’ll have what the official advice calls a ‘mild’ or ‘moderate’ illness. Bear in mind that the ‘severe’ end of this spectrum is in the ICU with pneumonia and lung damage, on oxygen or a ventilator. The mild cases can range from barely aware you are ill to a brief but unpleasant illness similar to seasonal flu. Now we all know that flu is not something you’d usually call a ‘mild’ experience. These descriptions can lull people into a false sense of security. It’s all relative.

WEEK 1 March 9th

I started with a sore throat eight weeks ago, not severe, but relentless, and occasional it would be irritating enough to give me a sharp cough. My throat was visibly red but not noticeably swollen at the time. I’m no stranger to sore throats, having multiple disabilities and having experienced long term chronic illness. I have had thyroid surgery twice. It might sound odd, but a sore throat for me doesn’t necessarily always mean infection. However, as the week went on, I started feeling unusually tired. I found myself going to bed during the day. Still no real fever, or feeling of being really ill. I started getting palpitations. I have a tendency for (harmless) ectopic heartbeats, and one of the reliable triggers for them is when I have any sort of infection, even a cold. These started happening quite frequently but I also noticed I was having SVTs (supraventricular tachycardia). This means, to put it simply, a rapid heartbeat at rest. It was happening in short bursts, maybe just a few times in that week. I had had these previously many years ago, after a severe tooth infection, and they were picked up on an ECG. I was now concerned, as I hadn’t had them at all since then. I began to feel a bit hot, like I had a slight temperature, but not very feverish. It’s a bit hard to tell as I’m perimenopausal, and get night sweats anyway, but the sweats were quite bad that week. Around midweek I had a migraine. Again, this is something I’ve been prone to with the perimenopause anyway. I just get the flashing light patterns in my vision (migraine aura) without the severe headache. The aura was quite vivid. As I felt tired and a bit unwell, and with all the news about covid, I decided to stay at home that week as a precaution, although I had a few visitors, who I warned, and who kept their distance (they are all ok and didn’t get ill from me, thankfully). Bear in mind that my symptoms didn’t fit the descriptions on the NHS website. I was thinking I maybe had a case of pharyngitis, or tonsillitis coming on. After almost a week, I woke up one morning and my sore throat and tiredness was completely gone. I felt my usual self, my usual level of energy etc. I was a bit surprised by the suddenness of the recovery. Infections usually gradually improve, don’t they? This lasted until the following day, when my sore throat came back and I started feeling a bit hot again. In the evening I was standing in the kitchen when abruptly I felt my lungs deflate. I don’t know quite how to describe it. I have mild asthma, and it was like that, but worse and far more sudden. It was like a pressure squeezing my upper lungs, a tight chest, and wheeze, but the feeling of compression was the strangest, and like nothing else I’ve experienced. It was a very strong pressure, like someone sitting on my chest, but not painful. I knew in that moment it was covid, but still I tried to reason my way out of it. I took my inhalers, which helped a little but didn’t completely relieve it, which is unheard of for me. I rang 111 and, to cut a long story short, eventually it was arranged for me to get a callback from a doctor. The callback came at 11pm, by which time I was in bed, with my throat so swollen, and my upper chest so tight I was afraid I might to choke to death if it kept progressing at that pace. I had to really focus on staying calm, and relaxing my throat and breathing. Over the phone the doctor assessed the sound of my breathing and listened to my description, and told me he believed I very probably had covid. I was somewhat stunned, as at that point, it was still mostly in my throat. He said that is how it has been manifesting. He was lovely and reassuring and said, your breathing is ok, you don’t need an ambulance, you’re going to be ok, but of course if it gets worse, call 999. I took an ibuprofen. There hadn’t yet been any warning about doing that and I took it to reduce the swelling in my throat, because if I hadn’t I would have had to call an ambulance. It was that bad. My throat felt very narrow. I didn’t sleep much that night, unsurprisingly.

WEEK 2 March 16th

Over the next week, the feeling of constriction travelled from my throat, down to my upper lungs, then my lower lungs, then gradually back up, but it was not continuous. Attacks would come in sudden waves, then ease off. I developed a more regular hacking cough. I wouldn’t describe it as continuous but I did have it every day. It was a throat cough, harsh and barking, where my throat would briefly close right up and I went dizzy and felty like my eyes were popping and my head expoding. It seemed similar to whooping cough, as far as I can remember. It was all very, very dry and inflamed, nothing to cough up. I had SVTs, and tried to take my pulse but never quite caught them as they were so brief.

WEEK 3 March 23rd

I was having times where I would lie down for hours and concentrate on my breathing and on staying relaxed. I was out of breath lying down, but not so much that I couldn’t speak, more like when you’ve walked up a short hill briskly. Having had asthma for years, I know how to stay calm during breathing difficulties, and as the attacks didn’t get more severe, and I was able to speak and walk around slowly, and wasn’t turning blue, I didn’t phone for an ambulance. It all still felt mostly very dry. I had my inhalers to keep it manageable. I can’t remember at what stage I had a few days of slightly griping guts, but it might have been during this week. Early in week 3 I took my pulse just after a burst of SVTs and it was 106. I knew it had been much faster during the SVT, but even 106 is pretty fast for a resting pulse, and certainly not normal for me. I kept taking my pulse regularly over the next few days and it fluctuated between 73 and 100, the fast pulse coinciding with the episodes of breathing difficulties. Later in the week I had a sudden recurrence of the sore throat, which had previously gone easier, along with an episode where I had a slight drowning feeling in my lungs, and light-headedness, which was pretty scary. I was having coughing fits, still with the throat cough, but although my lungs felt like I needed to cough something up, like there was a cloud in there, it was impossible to cough from the bottom of my lungs. It felt like they were a bit paralysed. At this point I was really having to manage my fear, as I know panic is not conducive to easy breathing. I started hearing slight crackling in my lungs, although there was still no congestion that I could cough up. I was short of breath quite a lot. I phoned 111, knowing that they might say go to hospital. Whilst waiting for the callback, I started packing a bag just in case. It was a strange experience because I could walk and talk, yet it was hard to get myself together and get stuff done. When the doctor heard my breathing on the phone he immediately said, call 999 and go to hospital for a chest X ray and to get tested for covid.

This was 29th March. I phoned 999. I can’t remember how long it took for the ambulance to come, but it wasn’t unduly long. Two paramedics came in the house, and one of them took my blood pressure and pulse, checked my oxygen with an oximeter, and listened to my lungs. My breathing was in an easier phase by that point. He thought my lungs sounded ok and my oxygen was fine, but my blood pressure was 180/106, which is severely high (I don’t normally have high blood pressure) and my pulse was 150. I did point out that my pulse shot up when the ambulance parked up, and we laughed about that, but later in the ambulance, and at hospital, my pulse remained at 100, and my blood pressure didn’t come down. The paramedic gave me a face mask to wear and I kept this on until I came home later that night. I went to the covid A&E department, where again they checked my blood pressure, pulse and oxygen and listened to my lungs. The doctor listened to my detailed description of my symptom progression. I went for an X ray, and they couldn’t see any signs of pneumonia or lung damage. The doctor decided I didn’t need to be admitted. They couldn’t offer me a covid test as they didn’t have enough available, and were only giving them to those ill enough to be admitted to the covid ward. He was confident however that I did have covid, based on my very distinctive symptom pattern. A few days later I checked my medical records and he had diagnosed me with covid. I have it in writing. He said my blood pressure and pulse were the normal response to the virus. I was given a packet of antibiotics, just in case of secondary bacterial infection, and told I could go home, but that I shouldn’t hesitate to come back if necessary because it was still possible it could get worse. They arranged a hospital taxi for me, as I couldn’t risk any family members driving me home with infection risk. Unfortunately there was a mix up over names in ordering the taxi, and ended up sat waiting in A&E for another four hours. This was pretty unpleasant because by then it was the middle of the night, and I was exhausted, but it was also highly distressing because I had plenty of time to unavoidably overhear the experiences of the other covid patients around me in the other bays. At the time I was upset that this wait could have been avoided, but it has certainly given me an insight, which I think is important, and is something I want to share.

In the bay to my left I could hear someone, I think a woman, whose breathing was extremely rapid and very shallow. She was there for almost the whole time I was, and in that time, her breathing didn’t improve. I could actually hear her breathing in the next bay. Not good. She was put on a nebuliser several times, but it seemed to make no difference. There were long periods of time when I could neither hear nor see any staff nearby. This was after I had been seen and discharged, all within an hour of arrival, but unable to leave without transport as I was infectious. This woman was laid there alone, struggling to breathe, for hours, intermittently checked and helped by staff. I could hear staff on the other side of the wall, in another section of the covid A&E, and it was clear they were extremely busy, and I don’t doubt they were doing their best to attend to everyone. When they did appear, they were so compassionate and caring to all patients, and full of apologies for the delay. At one point I overheard a doctor or nurse ask this woman if she had COPD (chronic obstructive pulmonary disorder: in other words, a pre-existing long-term lung condition) and I was shocked to hear that she hadn’t. Later in the night her gasps were amplified by her sobs on every laboured breath. It was horrible to listen to her so helpless. I felt helpless, isolated in my bay, and she was sobbing, alone. I wondered if she might die.

In the bay to my right, there were three successive patients in the time I was waiting. In between each patient, two cleaners, wearing masks, apron and gloves, came and cleaned the bay. I was impressed with what I could see of what they did. They removed the curtain and packed it in a plastic bag, then changed apron and gloves to continue cleaning. The entire walls were mopped with bleach using a disposable mop, and the mop head was then unscrewed from the handle and bagged up, without touching it at all. I couldn’t see the rest of their work but it went on for some time. A clean curtain was put up at the end. There was a system of laminate signs pegged to each bay with a red stop sign saying contaminated or a green go sign saying clean and ready to use. The medical staff had similar PPE to the cleaners, most of them wearing masks, aprons and gloves. The doctor I saw had no mask on and one of the nurses had no gloves but washed her hands in front of me. Overall I felt they were protecting patients from cross contamination, but they were not well protected themselves, with bare arms and most had no eye protection. In this bay to the right, the first woman I heard in there was brought in on a trolley, and was being admitted to the ward with pneumonia. The next woman was middle aged and I heard her make a phone call on speaker, to a man, and as she told him her lower lungs were ‘consolidated’ (full of mucous and not able to function) because she had pneumonia and was being admitted, I heard him say, you’re going to be alright aren’t you? To which she replied, I don’t know, and then he started sobbing out loud. She was able to walk around as I saw her walk to the toilet. I also had to use the toilet while I was there, which meant passing quite a lot of staff in close proximity, many of them without masks on. I felt like a leper or a walking bomb. The third woman in that bay was young and I heard her describe her throat closing up, and struggling to breathe and that she’d been like that for a few days. Her pulse was also 100. I think they were going to send her home too. There were other patients coming and going in other bays, but I couldn’t hear what was happening with them. After waiting hours for my taxi I was getting uncomfortable as I was in a plastic chair (they hadn’t expected me to be there long) and overtired and distressed. I daren’t take my mask off for a second, so I hadn’t drunk anything, my throat was dry and sore, and I couldn’t blow my nose. I had coughed violently into my mask, and sprayed the inside of it quite nicely. When I was finally escorted out, by admin staff wearing no PPE at all, I again I had to pass all the unmasked medical staff in the corridor and reception desk area. The ward was locked and the woman had to press a button to let me out into a foyer where the taxi driver waited, wearing a mask. When I got home I took off all my clothes and mask in the front porch, bagged up everything that had been to hospital with me, and got straight in the bath. It was after 3am. I may have already been infected but I didn’t want to increase my viral load, or bring more infection into the house.

WEEK 4 March 30th

By Friday of the fourth week I was feeling like I was starting to recover. I still had a slight wheeze, and a pulse of 95. I told people I was nearly better. By Sunday my pulse was back to normal.

WEEK 5 April 6th

I haven’t noted anything in my diary for the first half of that week, expect for a normal pulse, varying between 66 and 76. On 9th March my sore throat came back, along with slight breathing difficulties. It’s like your lungs are a dishcloth being squeezed. Sometimes it’s subtle, and sometimes it comes on very suddenly. I now understand why people were dropping dead in the street in Wuhan. You think you’re fine, then suddenly you’re really not. I was occasionally coughing again and having a few SVTs. My resting pulse was 84.

WEEK 6 April 13th

My pulse came back down to normal again for a couple of days and I was relatively ok. Then on the 17th I had an occasional sore throat again and felt a little tight-chested. I had very occasional SVTs. By this time, I was getting a bit fed up with being ill. I still had a tight chest the next day.

WEEK 7 April 20th

On 20th April I had a sudden attack of wheezing and being tight-chested, a little worse than the last attack. I had a sore throat again and felt like I had a slight fever. I was having SVTs again and my pulse was 80. The following day I felt like I had a blazing head cold, sneezing etc. This was the second time since getting covid that I’d had a day of feeling like this. I didn’t note down what date I previously felt I had a blazing cold, but it was a similar pattern, happening after a phase of breathing problems, possibly around week 3. I’d been isolating from people this whole time, so not sure if this was an actual cold, or part of, or a reaction to, the covid. I felt very tired. The day after that I was feeling a bit breathless. By 25th April I had acquired a blood pressure monitor. That day it was 128/77 which is fine. I then felt relatively ok for a few days.

WEEK 8 April 27th

On the Tuesday I had an attack of SVTs and ectopic heartbeats and felt breathless in my lower lungs. I was very tired that day. I wrote in my diary that the crackling in my lungs had been ongoing for days and was most noticeable when lying down. On 29th April I took my blood pressure in the morning and it was fairly ok at 136/81 (top reading slightly high but not concerning). In the evening my lower lungs felt tight and I had a sore throat again. I was having SVTs so took a few BP readings which were 160/89, 164/88 and 160/84. All mild to moderate high blood pressure. My pulse readings went no higher than 84. The next day I was still having breathing difficulties and my BP was 149/85 pulse 94 and irregular. I took my blood pressure and pulse quite frequently over the next few days and it fluctuated up and down, with the rises either a few hours before, or at the same time as the attacks of breathlessness. On 1st May my throat felt sore and inflamed, and I felt the inflammation was also in my lungs. I was wheezing but strangely my breathing felt a bit easier. This felt more familiar, like a regular throat and chest infection, instead of the squeezing breathlessness and weak lungs of before. On 3rd May I was feeling tight-chested, having difficulty breathing, and the throat cough was back after weeks without it. My lungs were still crackling. BP 153/90 mildly high.

WEEK 9 May 4th

Today is 4th May and I’m feeling relatively ok, sat here with my lungs crackling gently. I acquired a cheap oximeter a few days ago and my oxygen appears to be fine. I still feel my lungs are not at full capacity. Getting up and moving around can trigger sudden wheezing. Sometimes I can go for a walk or do housework without much difficulty. Other days I have to keep stopping to breathe. I feel I’ve lost strength and fitness. My heart and cardiovascular system is under strain. I’m 48, and not officially in a highly vulnerable group. Through the whole of this, it’s been difficult to be focused, or work. My brain has been foggy and my usual high creativity has gone out the window. This is the first day I’ve been able to sit for this long and write. I’ve been writing for five hours solid. 4,320 words. If you’ve read this far, thank you for persevering. I hope it helps someone somewhere not to make a dangerous choice. I had to get this all off my chest, both metaphorically, and literally. I am feeling fearful this is going to cause permanent damage, or that I will have a chronic infection. I’m trying to keep those thoughts out of my head. I’ve no idea if I’m infectious. I know the official advice is that I’m unlikely to be, but given that I keep having random returns of the fever, who really knows for sure? I’ve lost count of the nights I’ve lain awake because I was struggling to breathe. I keep saying I’ll ring 111 tomorrow if I’m not better, but overall, I am progressively getting very slowly better, with good days and bad days. I don’t know what they could do for me, other than another chest X ray, and given that my lungs don’t feel any worse than the day I did have an X ray, I doubt they would find anything. Still, I may ring them just to check, and so it’s on my medical records that I’m still not better. Because the symptoms can come and go so dramatically and abruptly, I don’t feel entirely confident I can say I’m ‘getting better’ until I’ve actually been fully better for several weeks. Nine weeks ill and counting. Don’t be complacent. I sympathise that lockdown is frustrating, or even desperately despair inducing, but I don’t want you to be the one lying in A&E alone, gasping, or sobbing on the phone as your relative says they have double pneumonia, or to end up like me, incapacitated for nine weeks and not knowing if and when I’ll be better. Every time I see a social media post suggesting this is all over-the-top, or a hoax, I feel sick to my stomach. Be careful. This is real. It makes me want to cry for fear of you struggling to breathe, alone, with no one to hold your hand. That’s the reality. This lockdown is hard, but for many of us, getting covid is far, far worse. Trust me on this. Stay safe. Please.

Love to you all.