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Jane’s story

First Published 07/05/2020

I’m a 42 year old cancer nurse, also doing a PhD. Normal life was turned upside down for all of us with the arrival of Covid-19, and mine was no exception. A busy mum to two boys aged 11 and 12, home schooling had just become a reality for our family, jobs were on the line, and new rules were in place about any contact with any family or friends. When I felt unwell the weekend before lockdown I thought my mind was playing tricks on me. But as a cancer nurse, I felt unable to take any risks of infecting others and called the advice line, even though I didn’t have either of the red flag symptoms (fever or cough). I did feel shivery, achy, and had a headache, sore throat, lack of taste and smell, and was fatigued. I tested positive for Covid-19 on the 24th March. Over the next couple of days the virus developed into barely being able to get out of bed, with breathlessness. Lying on my front gave me great relief, and a borrowed pulse-oximeter ensured I could assess my oxygen levels and be reassured I was ok at home without needing oxygen. A lingering tooth infection flared up, and having not needed antibiotics for nearly 12 years, I started a course prescribed by the dentist. After a few frightening days, I assumed I was ‘over the worst’.

I was getting mixed advice about going back to work, as the Doctor who had called me to diagnose the Covid-19 had clearly said I could come out of self-isolation and go back to work on day 8 if I didn’t have a fever. I didn’t have a fever, only lingering fatigue, no taste, and breathlessness, and yes I was feeling better so I arranged to spend a few hours each day attending essential training  so I could be re-deployed away from the PhD part of my job and back to full time clinical work. I was so full of enthusiasm,  imagining that my recovery (which was a bit slow) would be all over by the following week and I could be useful as a frontline worker who has had Covid-19. I hastily volunteered for extra shifts and Nightingale, finding comfort in the familiarity, compassion and camaraderie of nursing.

By week 3 I was still having good days and bad, but only ‘on call’ for extra shifts, on annual leave and contemplating exercise, asking myself if it would help me recover, feel stronger and more myself. I was used to taking regular exercise and was missing all the physical and emotional benefits. But even a small jog was too much and during this week I deteriorated quickly with an acute urinary/kidney infection and was back to being unable to get out of bed for 3 days with similar symptoms to the first round of Covid-19. The GP prescribed my second course of antibiotics. This cycle of good and bad days with constant underlying fatigue and breathlessness, random sore throats and headaches continued for 6 weeks. The urinary / kidney infection went and came back again, needing a 3rd and longer course of antibiotics. During this time I have felt confused about what was normal Covid-19 recovery, I kept thinking I must be better and then going downhill again. I have worked only a handful of nursing days and it would have been impossible to take on any more of the extra shifts I had hoped to do. Throughout the whole experience I felt that I was in the grip of the virus, I haven’t felt myself and have found social interaction daunting and exhausting.

It is now coming to an end after 6 long and frightening weeks. I feel like a fog has lifted and I’m enjoying things again very cautiously. I can taste! I know there are so many people who are much more severely affected by this, and many who will have lost loved ones which is devastating beyond belief. I am so grateful that this has only been mild in comparison. However for all of us who recover it seems it is a winding road to recovery, where hopefully we can support each other on the way.

Week 12 Update

I am writing this on June 10th 2020, and I’m now in week 12 and recovering from another relapse. The last 2-3 weeks have been really hard. The last day I felt well was May 22nd, I’d had a good week and went for a short 4k run feeling great. The next day it was all back. It’s not that I’ve been super ill but I’ve been gripped by mental and physical fatigue. My throat and chest feel burnt and has been incredibly sore, and I’m still short of breath. My throat glands and ears would become sensitive and painful when I was tired at the end of the day. My whole body would ache. It has been more constant than previous relapses which have had dips of 4 or 5 days interspersed with good days, but this has lasted for over 2 weeks.

I’m scared about the future, is it Covid? Is it post viral fatigue? There are lots of messages on Covid support groups pleading with long-term Covid sufferers to rest to try and avoid some of the more serious long term conditions like crippling chronic fatigue or myalgic encephalomyelitis (ME). Only 18 months ago I ran the Glencoe Skyline Ring of Steall fell race, a gruelling 29km, 2500m mountain race, not that I’m a winning any of these events but I’m strong and love to be in the mountains. I cycle 10 miles to work. Everyone has a lot to lose with a change in their health, but I feel something like grief at the potential change in my physical health.

Considering I only work one clinical day a week I’m just about managing this and am blessed to really love my job and my wonderful colleagues. At work on the 1st June I was offered a blood (venous) antibody test – they were offering to as many staff as they could to build up data on immunity. It came back NEGATIVE, I DO NOT HAVE ANTIBODIES. I went through the shock and disbelief and have come out feeling that there is so much we don’t understand about this virus that this result is only a small part of a bigger picture. I need to keep a positive mindset. I feel a little more strength this week, I’m on a super healthy regime, doing some gentle strengthening exercises but avoiding raising my heart rate at all. The symptoms haven’t gone away completely but this time could it be the beginning of the end of my Covid experience? I have no idea.

Week 20 Update

At 20+ weeks since this all started I’m definitely feeling a lot better. I’ve learnt about pacing and despite having some bad days they don’t turn into the relapses I’ve had before. The last of the strange symptoms was a rash all over my back at week 12-14. Week 16 wasn’t so good, triggered I think by a stressful work experience that led to a fatigue where I just couldn’t take any liberties with the pacing, if I did too much the shutters came down. It was also the week before my period, and I think every period I’ve had since having Covid has caused some kind of relapse. Symptom wise I have now normalised having intermittent breathlessness, chest pain and having a much lower exercise tolerance than I’ve ever had before.

I’m not micromanaging my diet anymore as personally it did at times help me feel more in control but it also made me feel a bit trapped in an illness mindset, I’ve just cut down on sugar/caffeine, I eat good home-made food, I have the odd drink.  I’m still struggling to have the confidence to push myself to make gains with my physical fitness, as I still don’t fully understand the balance between what might be a trigger – as some days I can get away with more. But I walk, cycle the e-bike, sail and climb gentle routes, I find running too hard on my body. I miss my friends who I used to run with but I’m finding ways to have fun and be outside without doing things that might cause me to go downhill physically and mentally.

I’d love more certainty on how to self-manage my symptoms, confidence to know if exercise is helpful, insight into whether my lungs will recover and what if anything will help. I’m fairly accepting of a longer recovery in which pacing is essential, but I worry for those who might find pacing impossible due to work, or if they have caring responsibility for others. I’m feeling hopeful for all of us as if I was to draw a graph of my health since Covid it would be very up and down, but overall would show a definite improvement.

Week 35 Update

It’s my 7 month coronaversary. Am I fully recovered yes/no – no. Overall I’m pretty ok, I can do what I need to, I’m working (mostly), having fun and can do some forms of gentle exercise. I’m doing a mix of yoga, walking, gentle cycling most days so that I know it’s not de-conditioning that is to blame. It feels normal to not be able to get enough air into my lungs, my exercise tolerance is still much lower.

I had a cough virus about a month ago (covid negative) and the fatigue was way more severe than I would ever normally get with a virus, I could barely move. Breathlessness got worse. I was terrified of an avalanche of chronic fatigue, like I was standing on the edge of a cliff with no control over when and if I would fall. Since this I’ve improved, back to normal post-covid crappy, and so I’ve contacted the GP again and have had a clear chest xray and normal bloods apart from anaemia for which I’m taking flurodix. I have an appointment in a Long Covid respiratory clinic – but the next available appointment isn’t until December.