My Long COVID Journey

This month marks two years since the UK went into lockdown in response to the coronavirus pandemic as it rapidly emerged in March 2020. We hope to raise awareness of Long COVID, the challenges it has brought to so many and some guidance and tips from one of our staff team who has experienced Long COVID first hand.

Note: As with any health condition, experiences, symptoms, and recovery times vary, the thoughts and experiences shared below are for supportive purposes and the content of this article is not intended to be a substitute for professional medical advice.  

The text below was written by a member of Changes staff team about their own experience of Long COVID.

It was the end of August 2020, and I was going on a hike with my friend. I noticed myself becoming very breathless and struggling to get up the hill. “Come on. hurry up!” my friend yelled back at me. I felt embarrassed. I didn’t know why I was feeling so out of shape. I thought “I’ve been doing loads of walking recently”.

I was unlucky. And unvaccinated, because this happened to me before anyone had a chance to create a vaccine. After spending 10 days recovering, I still felt completely exhausted. I didn’t know at that point, but it would take me 10 months to recover, to a level where I could function well and do most of the things I used to enjoy. Even then my energy levels would still be lower than they had previously been, and I would have to deal with other effects of what Covid-19 had done to my body. And to my mind. 

Having said this, I am grateful it wasn’t worse, and I consider myself to be lucky. I know that many other people have had much greater challenges than this and been affected in worse ways. The purpose of me writing this is to try and help some people validate their experiences and tell you that, although this is my experience and yours will be unique to you, you are not alone.

As of December 2021, 1.3 million people in the UK (2% of the population) reported experiencing Long COVID symptoms that persisted for more than four weeks from the first suspected infection, and were not explained by something else, according to the Office of National Statistics.

One woman I spoke to described it as “a crash-course in patience” another person told me that they felt that their IQ had “dropped 10 points” because of the brain fog they were experiencing. I couldn’t relate more! Through my personal experience of dealing with Long COVID I learned a few things along the way.  I hope will be useful to hear if you have had a similar experience with your health.

So let me take you through the challenges and what I found helpful along the way….

  1. Expectations: My expectations of the illness and recovery timeline. Getting my head around the fact that I wouldn’t be better in days, weeks or even months, may have been the biggest challenge. I didn’t have a reference point for that, and neither did those around me. Thankfully at the time I had two very wise friends sit me down and have strong words. One had gone through a post viral fatigue a few years ago, the other had Long COVID, and is unfortunately still recovering. I believe that their good advice saved me from an even longer recovery period. Despite this I still found it very difficult to accept, and fought the reality that my body wasn’t cooperating with my mind as I thought it ‘should’ be. This made it harder for me to recover physically and made me suffer mentally. I would constantly ‘gas-light’ myself telling myself that it was “all in my head”, that others “didn’t believe me” and thought I was “lazy” or “attention seeking”. This made me feel low, anxious and irritable and had a huge impact on my self-esteem. It also created a series of self-imposed ‘false-peaks’, that I had to navigate, and this re-enforced the idea that I was a failure, when I couldn’t reach these unrealistic standards that I set for myself.
  2. Pacing: Activities have different categories. When I first started to recover, I had to understand that ‘activities’ weren’t necessarily physical in nature. Speaking on the phone, or face to face, reading, or even listening to a podcast, or watching tv, for sustained periods were all exhausting. These mental ‘activities’ floored me to start with, and everything had a time cap. One of the most valuable things I learned to do was to PACE. Pacing is different from graduated activity, where you continually build on what you have previously built up. Speaking to an Occupational Therapist helped me to work out how to pace properly. Understanding what activities were ‘high’, ‘medium’ and ‘restorative’ took time, patience, and daily recording. The OT told me I had to “Pace, Plan, and Prioritise” everything. This meant that I would have to choose what was most important to me to do or “prioritise” that day, because my ‘battery’ would drain very quickly, and I felt the cost of every action. When I started challenging myself to go outside, my step count was 150 steps. If I went over this then I would be exhausted and ‘the payback’ could affect me for up to two days afterwards. Learning to listen to my body so I didn’t crash was key in my recovery… and my activity tracker was a lifesaver.
  3. Relating to and dealing with pain. One of the many weird and unexpected side effects/complications post Covid was nerve damage, for me. I saw a physio and they told me that they couldn’t give me a timeline on whether this would get better, but if I gave my body the right “conditions to improve” then the body is capable of amazing things. I do believe this, however working is definitely something that practically hampers my recovery in this area. I have found two things to help 1) Accepting that the pain is there to stay has changed my relationship with it. Once I stopped wrestling with the idea that it was unfair (which it totally is!), I was able to start doing more small things to help myself. Adapting to it and being creative have helped to ease some of the discomfort, and help me to focus my attention on things that are more helpful 2) Heat treatment is wonderful. It may not last long, but it really made a difference to me in helping me tolerate the pain.
  4. Self-compassion and accepting support. Having to work within these restrictions was frustrating, boring, lonely and extremely humbling. You never expect your body to give up on you like that. You want to do what you used to, but your body is just saying “no”. At this point I had to learn to ditch my pride, accept support, and show myself self some self-compassion. Self-compassion actually turned out to be a massive part of the recovery process. because every time I lacked compassion towards myself, it threw me back 10 steps. By practising this I was able to ‘dial down’ the level of frustration I felt towards myself and others, and it removed a lot of the ‘psychological barriers’ that I was placing in my way. It also helped with the loneliness that I felt from being exhausted, and not being able to do much. It helped me to work through the isolation and frustration of people not understanding what Long COVID is. 

For anyone reading this who has experienced Long COVID, or knows someone who has, here are some links that I think could be useful. And remember self-compassion, realistic expectations, reframing pain, and accepting support are all important milestones along the way…

These are just some of the activities at Changes which could be beneficial for anyone experiencing Long COVID. Click on the buttons for further information.

Other Resources – note that these links will take you away from Changes website

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