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07 Aug 2023

Long COVID Journey - Patient Story


Long Covid Research Hub

Long Covid Research Hub

I tested positive for Covid 19 in November 2021. I was unwell for two weeks with a high temperature, headache, cough, shortness of breath, chest pain, whole body rash, reduced exercise tolerance, difficulty with swallowing/speaking and generalised exhaustion with muscle aches and pains. I did not need admission to hospital. After this time, I made a very slow recovery and a month after the initial illness I was able to walk approximately 500 metres with 2 rest breaks and I then needed to rest for at least an hour afterwards. I would also need to sleep after completing any household task or activities such as showering. I returned to work initially for 2 hours a day then gradually increased this until I was working my full 7-hour day by 8 weeks post infection. My job is physical and involves me standing for the majority of the day and being able to supervise volunteers and welcome visitors. Due to the fast-paced nature of the job, I often struggled with organisation, and thinking logically and clearly due to 'brain fog'. My voice was also significantly affected both in clarity and pitch which made making myself understood challenging and I often felt too exhausted to speak/eat at the end of the day. By the end of my working hours, I needed to sleep and was unable to carry out tasks such as caring for my family or cooking meals. I was also unable to socialise with friends or family. I work part time (2 days a week) and now one year since my initial illness I still need a day off in between my working days to recover and I try to have a rest at lunchtime. I have a fit note to reinforce this need but find it hard to prioritise my needs when at work as I want to do the best job I can. I find at the end of a working day I have nothing left to give and would like to lie down on a calm environment as I feel I have reached sensory overload.  This is very difficult to do as we have a busy household with 4 children and I want to be able to cook and care for my family. I have always been a perfectionist and although I have had to let my standards slip, I try to keep on top of basic cooking, cleaning and household organisation is exhausting. I can walk around a mile now before needing to rest and I returned to swimming around 6 months after the original illness. I now swim twice a week which I enjoy while I am in the water but when I get out, I am exhausted and often have done too much. 

Following some standard tests, I was referred to the Long Covid service at the end of January 2022 - 12 weeks after the initial infection. I have had support from professionals in the long Covid team (nurse, Physiotherapist and speech and language therapist) and have numerous exercises that I need to do on a daily basis. I also have an appointment booked with a psychologist who has just joined the long Covid team.  I still need to pace my activities and have to plan what I am doing on a weekly basis to balance rest and activity. I still have many of the symptoms I had during the initial illness, mainly headaches, chest pain, shortness of breath, muscle aches and pains, joint swelling, difficulties with my voice pitch and quality, exhaustion, brain fog, facial rash, reduced exercise tolerance and shortness of breath on exertion. I have recently been diagnosed, by an ENT consultant, with reflux and it has been reported that I have some weakness in my vocal cords. I sing in a choir and this has been challenging as I am unable to sing in the range I used to have and need constant rest breaks making singing in concerts difficulty. I have been taking part in the ENO Breathe programme - run by the English National Opera this takes place mainly on Zoom. This has been a lifeline of support for me linking me with other people with Long Covid while also completing breathing/vocal exercises and singing lullabies. My recovery has been impacted by developing bursitis (I am unsure whether this is Covid related) on the soles of both my feet. This has made walking extremely painful. I have been advised to rest as much as possible which is having a detrimental effect on my physical recovery from Covid as I have been unable to maintain my physical fitness resulting in deterioration of my exercise tolerance and an increase in my chest pain and shortness of breath. Due to this I have put on weight and am battling to get back to my pre-Covid weight. In addition, my mental health has deteriorated and I have been on medication to manage this for the last six months. I have tried several medications but am unsure whether any have of these have been beneficial. I also struggle with driving (especially to new places as I find it difficult to follow directions/read maps as I can no longer think clearly/logically and I now very easily get lost). I have to write copious lists for tasks both at home and work, as I worry I will forget to do things. In addition, everything takes me a lot longer to do so I end up staying up late to try and complete the unrealistic tasks I set for myself in a day. I still get up early in the morning so am not getting enough sleep to facilitate my recovery. So, despite the intervention I have received, I am now 13 months post the initial infection and I cannot currently see a way forwards to recovery. I am therefore, trying to still work on pacing, mindfulness, a healthy diet, and exercise (when my foot pain is manageable). The fluctuating nature of Long Covid is challenging as things are constantly changing both on a daily and weekly basis making it difficult to plan and commit to social, work and family activities.

Written by Sarah