Living with Long Covid: Kirsty’s story

My journey with Long Covid started in 2021.  Up until that point I think I just assumed if I ever caught covid, I would be ok, but unfortunately it wasn’t the case.  I caught covid at a family party in July 2021 and felt awful within days, the worst symptom being breathlessness but I also had extreme fatigue, joint pain, chest tightness and heart palpitations . I felt terrified and remember taking myself off to the bathroom and quietly crying whilst my kids were in the other room.  I was so frightened in case I passed it onto them.  I felt dreadful for around a week and after that I assumed my symptoms would pass naturally. I returned to work after a week off sick. However, as the weeks and months progressed, I didn’t feel much better. I was hearing about ‘Long Covid’ but again I didn’t think that would happen to me.  After several months when my health didn’t improve I was diagnosed with Long Covid.

I work as a psychologist in the NHS and had a very responsible and demanding role. I enjoyed my job but I started to find it a struggle and I couldn’t function properly. I kept telling myself I will get better but even after taking a longer period of annual leave over Christmas/new year 2022, I didn’t feel better and decided to visit my GP.  I literally felt as if I was hanging on by a thread at this point, I felt so detached from everyone and everything and wanted to spend every waking moment in bed.  My mental health was so poor and the brain fog made daily tasks such a chore.

My GP suggested I take some time off work but I didn’t feel I could. Working in the caring profession I felt I would be letting people down.  The guilt was overwhelming and also feelings of ‘failure’ that I was in this position.  Ironically one of my posts was Lead Clinician in the Psychology Staff Support Service; helping to look after staff wellbeing so they could be well at work.  Here was me giving people support but not looking after my own needs. It wasn’t particularly good ‘modelling’.   As hard as it was, I decided to take my GP’s advice and take time off work.   In total I ended up being off for a period of 18 months as my health did not improve.  During this time, I had personal therapy as I found it difficult to cope with the psychological adjustment of having a health condition.  I had always been a high functioning person but now my life felt unrecognisable.  I have two young children and whilst I kept going for them because I had to, I spent a lot of time in bed every day while they were at school.  I felt I was failing my family as I couldn’t do the kind of things I used to do.  I lost my sense of identity and purpose.

Therapy did help and I was able to process my emotions and begin to ‘adjust’ to life with Long Covid.   Even 30 months later I still feel like I’m adjusting, its a physical and emotional rollercoaster. But I have learned not to be a ‘victim’ of my circumstances as this was making me feel more helpless and hopeless.  I try to focus on what I could still do even if it is now quite different.  I try not to let long covid dominate my life but that attitude feels slightly easier on my “better” days.

I had still been in touch with my GP during my time off work for ‘reviews’  but often felt dismissed and invalidated. I even started to question if my symptoms were all in my head after being repeatedly told all my observations were “normal” and on one occasion I was advised that I should return to work to take my mind off my health. I often left the GP Clinic feeling even worse about myself and even more isolated and misunderstood. I paid privately to see Dr Claire Taylor in Tayside in February 2022 after waiting several months. She was amazing and I felt so validated by her. Unfortunately I couldn’t afford regular appointments with Dr Taylor but I tried some of the medication she recommended. It didn’t totally agree with me so I’m off most medication except fexofenadine.  I also take supplements daily. I went down the holistic route of treatment and had various treatments to try and improve my health and I still make time for these treatments each month.

I was lucky to have support from Occupational Health through work and saw a Fatigue Management specialist for several months. These sessions were a lifeline for me whilst I was off my work and helped me to prepare for returning to work.  I returned to work in September 2023 after 18 months off. I am still on an extended phased return and this has been crucial to build up my energy and tolerance.  I have enjoyed being back at work but it is taking time to build my confidence back up and I still suffer tiredness, breathlessness and brain fog. But it feels a bit more manageable than it did even a year ago. My phased return ends next month and I am expected to be back at full capacity, the prospect of which overwhelms me.

I unfortunately caught covid again (for the 3rd time) 5 weeks ago and this has set me back again health wise.  I do not feel physically or mentally able to work at full capacity as yet, so I have recently had to communicate this to my employer.  The tricky thing is with Long Covid is that many of our symptoms are not ‘visible’ to others , so on the surface we may look and appear ‘fine’, but people don’t see the pain, angst and struggle behind the scenes.  Long covid symptoms are inconsistent and unpredictable and so it can be difficult to plan things ahead.  Having a good support system in place at work is crucial for staff with long covid returning to work so that they can work safely and productively.  There needs to be flexibility with work arrangements and a compassionate approach towards staff to help them maintain their health.

Long Covid is real and significant and I wouldn’t wish it on anyone.   I don’t know what the future holds for me with regards Long Covid.  I am lucky to have support from family and friends and from people on the Long Covid support group on Facebook. It’s helpful to have people who understand what you are going through in a way that friends and family can’t.  I still try to socialise when I can but I am aware of my energy levels these days and it takes me longer to recover.  Long Covid is different for everyone and recovery stories vary, it is not a one size fits all with recovery.   I am more attentive to my own needs these days, listening to my body and still rest and pace where I can. I would certainly urge others to do this and not just push on through. It’s a slow gradual path but I hold on to hope that one day I will recover from Long covid..

Kirsty

age 46

19.2.24