Published 13.11.20
I work clinically in the NHS. The infectious diseases ward I work on was the first to admit patients diagnosed with COVID-19 in March 2020. However we were not treating these patients and therefore told not to wear PPE in the ward unless directly involved in the patients care. Within 2 weeks my symptoms started. I have experienced three phases with COVID-19 that I have labelled; 1) Acute; 2) return to work; 3) Long COVID. I will describe all three separately.
1) Acute COVID-19 Phase
I got home from work on Friday and had overwhelming fatigue. I couldn’t make dinner and just fell asleep on the sofa. I don’t remember going to bed. By the time i wok up on Saturday morning with a persistent dry cough, fluctuating fevers with feelings of being very cold and very hot, headache, and increased work of breathing rolling over in bed. On the 2nd day I remained in bed with ongoing symptoms which included pyrexia (38.8C), continuous headaches eased by paracetamol, all over body pain with muscle spasms and joint pain, unpredictable fevers with hot/cold flushes that again were eased with paracetamol, persistent cough with thick yellow sputum production, shortness fo breath, tinnitus, runny nose, loss of smell and taste and nausea. By Day 3 I got out of bed, with resolution of headaches, fevers, pain, pyrexia and breathlessness. I was able to shower, and was able to tidy my bedroom. By Day 4 my partner developed identical symptoms with the same pattern. He cared for me. Now I took on the caring role. On Day 4 I tried to exercise but had reduced exercise tolerance. I found Yoga beneficial. By Day 5 I had overwhelming fatigue resulting in being asleep most of the day. By Day 6 fatigue continued, and the productive yellow cough persisted. Shortness of breath returned and my GP prescribed me antibiotics for an adjacent bacterial chest infection to suspected COVID-19. At this time I had not been tested as there was no availability of testing. Day 7 I felt like I had returned to normal in the acute phase of my experience with COVID-19.
2) Return to Work Phase
After 10 days of being off work with acute COVID-19, I returned to work full-time. I felt able to work. However I did have some persistent symptoms. I noticed I had reduced exercise tolerance with breathlessness on activities that were previously not an issues for me. For example I was short of breath walking 1km from the tube to the hospital where I work. I also has dis-coordination when ascending stairs, where I felt like I would loose my footing or miss the step, and trip up the stairs occasionally. I also had fatigue. The breathlessness improved through rehabilitation I was able to perform myself. I would walk quicker and sing out loud to improve pulmonary function. I would exercise (high intensity interval training) in the mornings everyday for 7 minutes to improve fitness and exercise tolerance. I had not issue with exercising. My work schedule had changed, because I had been moved from my usual area of practice to acute medical wards, then COVID-19 High Dependency, then Intensive Care. Our shifts changed to work more evenings and then overnight. Because of national lockdown, it was difficult to get home after a shift, so I would got o work and not return for days, sometimes up to 5 days) and have to sleep at a hotel near the hospital to make sure i was able to attend work. It was fatiguing, but I did not feel this was anything other than still recovering from acute illness, and reduced exercise tolerance. So I kept pushing through. I was very active, keeping myself busy, and work was chaos. I worked the Ester weekend in intensive care, and the only way I can describe it was like a war zone. The fear in every-bodies eyes, the severity of illness among patients, the level of physical exertion required to keep treating so many patients without break or respite from the PPE. I was also keeping busy with my non-clinical commitments with research, submitting ethics proposals and successfully publishing papers. But after 3 months of being back to work I noticed the fatigue would come in waves. Once every week or 2 weeks, I would have a 24 hour period of intense fatigue, that was not triggered by anything I could identify, and was self-limiting. I would get home, not eat and just go to bed and the next day felt able to go to work again. This episodic fatigue was worrying however. So I started taking food supplements (Full spectrum curcummin) to try help. It didn’t. I wondered if it reduced the severity of fatigue, but what actually started happening was the fatigue was becoming more present everyday. I was struggling to be motivated to cook food at home, I was too tired to prepare breakfasts or lunch to take to work. I was just coping to get through the day, and was spending all my rest days doing nothing but watching TV in pyjamas. To get through work I was having to consume more coffee than normal. Usually I have one coffee in the morning and rarely a 2nd in the afternoon. But now the fatigue affecting me so much, I would have a double espresso before I left the house, plus an Americano before I got to work. The another coffee at 11:00am and at lunch. And sometimes before i left work. I even reached having 6 coffees per day, and I was masking the fatigue I was experiencing. I could not socialise, meet friends or family, be the partner I wanted to be, or do meaningful activities. I was literally just working and surviving on coffee. I wanted to do fun things again, so one weekend my partner and I went for a long walk on the Saturday (10km). On the Sunday we went cycled 17km. On Tuesday it was a really busy day at work that was physically, cognitively and emotionally exerting. By Wednesday I crashed. And this was the realisation that I had Long-COVID.
3) Long COVID Phase
I crashed on the Wednesday, where I just wasn’t able to perform my usual duties at work. I was walking slower, I couldn’t remember things, I wasn’t processing properly. On Thursday I started crying in Zoom meetings without reason. By Friday I just wasn’t able to provide the care to the patients they deserve because I had not energy to do anything. I spent to whole weekend in bed, doing nothing. I returned to work Monday and I struggles walking, I found my legs heavy, like my femurs were made fo lead which made them difficult to move. I was pale, sweaty, breathless and struggling to focus. I felt dizzy. My colleagues sent me home from work. On the same day, my GP signed me off for 2 weeks with suspected Long-COVID but titled “post-viral fatigue”. I was off work for 2 weeks. I was advised by a friend with ME to start taking CoEnzyme Q10 300mg daily, and consider CBD oil. I started Q10 the next day. I spent the first week in bed, unable to do any basic activities of daily living. I was dependent on my partner batch cooking food for me so I could eat. The 2nd week I was out of bed, but only getting from bed to sofa to watch Tv or look out the window. I had no energy to still get washed and dressed everyday. I had also taken a 2 week break from all social media. My GP signed me off for a further 2 weeks. I also noticed that if I did any activity that was exerting, either physical, cognitive or emotional, I would be tired, but then the next 2 days I would be wiped out and back to bed or sleeping on the sofa in the day. I was experiencing post-exertion malaise. I was given advice by colleagues to stop, rest and pace. I started to record my symptoms in app, factors that were involved in my day and other relevant info. By week 3 I had bought a walking stick that provided sitting to rest and pacing (called a FlipStick). This meant I could leave my flat. But I live in a 2nd floor flat with no lift, so stairs were a real problem. I noticed I was having tachycardia with minimal exertion, where my heart rate would jump from 60 to 180 my walking around the flat. Week 4, I started to leave the house more, and my parents came to visit. I found that being around people was too cognitively stimulating and caused extreme fatigue. Which in turn affected cognitive processing. They wanted to take me out of the flat for a meal. But by the time we drove the restaurant, I could not cognitively process the menu and spent the hole time crying in the restaurant though exhaustion and fear. By the end of week four, by GP agreed to sign me off for another month. I was also desperate to improve, so my parents purchased the CBD oil I had been recommended. I tried it twice, and it resolved all my symptoms for 2 days, but I couldn’t sleep. So I didn’t take it again. At the start of week 5 however, it was like a switch had been reset, and suddenly the brain-fog started to lift, the fatigue started to melt away, I had energy to do things. I couldn’t figure out why, but the only thing that really had changed was starting Q10 4 weeks before. I did some reading o f the literature and apparently it can take 4-8 weeks for it to take effect. Week five I was able to walk outside without a walking stick. I went food shopping independently. I was able to start reading again, reply to emails and planning activities. Week six I was able to prepare and cook meals from recipes, walk longer distances (2km) without post-exertion malaise or fatigue. Week 6 (the week I am writing this testimony) I have felt mostly normal again. But I worry about exerting myself too much for fear of relapse. Also continue to struggle with memory and cognitive processing. I performed a series of tests today for a COVID-19 brain study and was really upset with how much my memory and cognitive processing such as spatial awareness, associations and recall have been affected. I still have 2 more weeks for rest, recovery, pacing and self-directed rehabilitation. I do not think I will be able to return to work full time in 2 weeks, so I will be asking for a return to work programme. I need to meet with my GP and occupational health with my employers to discuss this.
4) Support and Healthcare
I am adding this section to my story, to share what support I have had. My partner and my family have been rocks. Without them, I would not have coped. Acute COVID was horrible. but it passed quickly. Long COVID has taken away my independence and ability to function. It is far worse. With Long COVID there has been no structural support from the NHS. My GP has signed me off work for 2 months, which has been essential to Stop, Rest, and Pace. I had blood tests that were normal, I had a chest XRAY that nobody will tell me the results of. I have been referred to cardiology and have an appointment in December. Work has accepted that I have had time off, and have not pressure me to return. I have had no contact from occupational health. Indirect colleagues from research and other fields (outside of my employer or clinical work) have been kind, and even sent me cards and gifts, which has really lifted my spirits. The You COVID Recovery website it mentioned all the time by anybody, but it’s useless. The fatigue page doesn’t mention pacing and there is no mention of post-exertion malaise. I have even tried to reach out to the team to provide feedback and offer my services to work with them. Which has fallen on deaf ears. So ultimately I have had to struggle through alone, figuring out what work and what doesn’t. It’s been the kindness of people through professional networks or online peer support that has helped, more that structured services for people living with such disability.