My Experience with Long Covid
Jasmine Laws / Jan 22 / COVID-19
Getting referred to a Long Covid Clinic is a long process. I had 10 months of doctors looking at my symptoms with no idea where to start. The only answer that made sense was that I had Post-Covid syndrome. A referral was sent off for me in April, and I received an appointment for September. It was frustrating to have to wait so long to get help. When I finally saw the specialist, I was put on a waiting list to start rehabilitation, and it was a month or so before I began physiotherapy and rehabilitation sessions.
The whole process of getting a referral was bittersweet. It felt like I was so close to finding answers and getting better, but rehabilitation is not the magic cure where someone tells you how to fix yourself. There is no magic ‘cure’. For me, it has been about learning how much it is my responsibility to fix myself, and how there is no point wallowing in my own self-pity for the daily battles I endure. Rehabilitation is self-motivated and self-disciplined. It is about riding a tide in the hope that one day you will be rewarded for your efforts. This might be as small as waking up one day to feel more energised or managing to exercise slightly more comfortably, or being able to have a later night and not feel horrendous the next morning. All the small little things you notice will build up until you begin to feel those deteriorated pieces of yourself slowly come back together; you feel begin like your body is your own again, and that you are still human after all.
My covid rehabilitation so far has worked as fortnightly sessions with an occupational therapist. I was expecting to go in there and have them give me some programme of recovery that would factor in each problem I was having, but instead, it was much more about how I was going to make my own programme of recovery. The responsibility was entirely mine.
At this point in time, I was struggling with an assortment of symptoms. My overactive thyroid had settled down slightly, but I was left with chronic fatigue, post-exercise malaise, heart palpitations, breathlessness and dizziness. It was difficult to untangle them all to know where to start.
First, I was told that I was going to be taught how to breathe again. It baffled me to think that after this whole year what I needed to do was ‘breathe better’. But this ridiculous-sounding concept felt much more serious when I registered that this was a huge responsibility to take on: I realised that I would continue to feel this way unless I completely changed by breathing. I was taught to use my diaphragm and stomach with each breath to re-train my body to use my full lung capacity to make breathing more efficient, but I found that focusing on changing my breathing for a long enough period of time made it feel as though I was having to consciously control each breath, and suddenly I would feel overcome with past trauma of having Covid as it felt like my every breath was strained and forced. It takes a long time to change my unconscious habits, and even to this day, I have to remind myself how to ‘breathe’ correctly.
In the following sessions, a lot of the focus was on my fatigue and sleep. As a student, this was a constant problem. I would be crashing every day either in the afternoon or evening, and never manage to have a social life. If I did stay up a little later, I would feel the consequences the next day when I would be too exhausted to get up in the morning. My sleep pattern was all thrown off: it would take me an hour or so to fall asleep despite my exhaustion, I would wake up throughout the night and toss and turn, and feel wiped out the next morning. The occupational therapist encouraged me to start pacing to reduce these symptoms of chronic fatigue, but I was given no guidance as to how one should ‘pace’. I was just given some activity sheets where I had to log how active I was every hour of every day for two weeks to learn where my limits were with daily life. I was told that I needed to stop each day before I got too tired, but often it would be too late and I’d have crashed before I could stop myself. It is a daily juggling act, and one which I am still struggling to master.
Trying to communicate that I was struggling to pace as a student was tough. I tried to explain how going to bed and waking up at the same time every day was virtually impossible when there is so little structure to a humanities student’s lifestyle. It also makes it a lot harder to stick to a recovery routine when you are constantly having to justify yourself to other people for why you live this way, as well as having to validate it to yourself every time you get frustrated with the sheer monotony of it all. It becomes exhausting telling people that I can’t go out or can’t do as much, when they can’t get their head around why. So much of what I feel on a daily basis is completely invisible, so it is hard for anyone to understand why I can’t do something when earlier that day they thought I seemed fine.
It felt like I’d waited all this time for help only to be dumped with the immense responsibility to sort myself out. I didn’t know what questions to ask in sessions because I couldn’t really get my head around what was going on. I felt like less than half of a student. Even to this day, I am student who only just manages to stay on top of work, only has one extra-curricular (dance), and has a miniscule social battery. Comparing this way of life to the person I used to be, the student who went out 4 times a week, had a jam-packed social life and juggled 3 sports and other societies on top of work, is a thought that often leaves me utterly deflated.
It took me mapping out every day in 15-minute slots to untangle my jumbled-up mess of emotion, responsibility and stress, so that my two feet could hit the ground again. After that I came to see productivity as not how much I could do in a day, but as how well I had looked after myself that day. Achieving one good thing a day was my new target; on days when I was bedridden, I would still remind myself that rest was the most productive thing I could do that day. This stopped me trying to fight my recovery as I finally came to accept that Post-Covid-19 Jasmine could not be Pre-Covid-19 Jasmine. I accepted that I needed take my recovery seriously and stopped trying to pretend that it would just go away by itself now that I could say I was in rehabilitation.
During this time, I was also undergoing testing for the heart symptoms I was experiencing. I did a heart ECG right at the start of my rehabilitation. There were three electrodes taped on my body, one on each side of my ribs and one on the right side of my chest, all wired up to a small box monitor that could be tied around my neck. I had to press a green button on a monitor each time I felt a symptom. I then had to note down what I was doing, what the time was and what type of symptom it was that I had felt. It took about 6 weeks for me to hear my results. I was phoned and told that there were a number of irregularities with my heart rate, but nothing “life threatening”. This was said as if not having a “life threatening” heart condition would be enough to console me with my symptoms. I am a 20-year-old, who pre-covid was a fit, healthy and active person - I thought that having any heart abnormalities would have been enough of a cause for concern. It really became worrying when, in the lead up to a dance performance, I could barely get through a 3-minute contemporary dance without my legs collapsing underneath me as my breathing turned into aggressive wheezing and stars filled my vision. I was eventually tested for the heart condition POTS and received a positive diagnosis from two specialists in the clinic.
POTS is a heart condition that they explained to me is where your heart struggles to get the blood to your head, particularly as you stand up from sitting or lying down. My positive diagnosis of POTS was an additional explanation for why I was constantly feeling so dizzy, fatigued, faint, nauseous and why I often experienced heart palpitations. POTS is not life threatening (the greatest risk is collapse or fainting), and was described to me as like an autoimmune condition where there is no cure, as one simply has to ‘recover’ from it. This includes pacing, better sleep, diet changes and different exercise. I was given no real support with how to make these changes: I was just told to read the information online and sort myself out a routine for recovery.
Throughout my rehabilitation the past few months, I have frequently felt invalidated by the reminders that I was not the worst case of Post-Covid syndrome that they had seen. I am obviously grateful that my situation was not hugely serious, but it has been invalidating to feel unwell daily while being told by doctors who have no idea what the condition feels like to live with that I am ‘not that bad’ compared to the older patients they see in the clinic. It also felt like they were forgetting that I am a final year university student with a large amount of work to do and limited headspace available for the responsibility of designing an entire recovery programme for myself. When I went in for an assessment with the Long Covid psychiatrist as part of the rehabilitation procedure, it baffled me that all I was offered was various medications without any sort of mental or physical support.
However, looking back to where I was at the start of my rehabilitation, I have learned a lot. I started the term feeling as though there was nothing that I could do to help myself recover and that it was hopeless. I have seen over the term how a rigid, daily recovery routine helps and, while my symptoms are still there, they mentally feel so much more manageable. The hardest lesson to learn is that you have to accept that you will not live the life you want to live for a while. As a young person especially, you have to accept that you will not be the student you want to be. You have to be realistic with yourself, and you have to be forgiving of yourself. You cannot possibly compare yourself to those around you running about their days, dashing off for sports matches or nights out. You have to stay in your own lane unphased by the world around you and walk slowly towards the finish line of recovery. Even though it has now been 15 months since I had Covid-19, so 15 months of me feeling unwell on a daily basis, my symptoms are not even the hardest thing to cope with anymore. The hardest thing is continuing to be forgiving of my body for not letting me be the person I want to be. It is trying not to fight it when I can’t do and be everything I want to do and be. Acceptance and forgiveness are the hardest obstacles of rehabilitation, but they are the most important bridge to overcome in order to let yourself recover.