Isaac Samuels was a freelance co-production adviser working with the Department of Health and Social Care and disability charities when he contracted COVID after being seriously ill in hospital for two weeks. Although he was well enough to be discharged home, he contracted Long Covid and was referred to an occupational therapist to help recover. This is Isaac’s story of how his occupational therapist helped him reclaim his independence and life back.
I am a person living with long-term chronic conditions and I really want to share my experience of the literally life-changing power of occupational therapy. The below outlines my challenges of living with Long Covid and how occupational therapy allowed me to reclaim my life and live it with purpose.
The last two years have certainly been a challenging time for everybody, and sadly I am no exception. I never imagined something like COVID would have happened, especially to me. Before COVID, despite being someone living with lots of physical and mental health challenges, I was active: I worked, travelled and led a full life. Then COVID came along, and it felt like this thing that you couldn't see totally changed my life. It changed the way that I connected to the outside world and the way I interacted with the people I care about. Really it just changed everything about who I was and what I was doing.
As I am vulnerable I was fearful if I got the virus it could kill me. This led me and my husband going into total shielding and not leaving the house at all. We relied on a small group of friends and volunteers to help us. This was especially difficult at the start as I began to shield much earlier than the government recommended as I saw what was coming. My amazing husband kindly stopped working due to the risks this would present, and whilst I was very glad to have his support, it was also difficult for us both to be effectively locked up together for weeks on end and the drop in income wasn’t great.
Despite all our precautions, I, and everyone around me still tested positive for COVID right before Christmas 2020. At this point, I was emotionally and physically exhausted having spent a considerable amount of time coughing and having difficulty breathing, and I was hospitalised. There are two weeks about which I have no recollection. But afterwards I felt so ill and traumatised I wanted to be out of this miserable state and even at one point was thinking it would be better to die.
Thus followed an agonisingly slow recovery over a year cumulating in a diagnosis of Long Covid and being told that my autonomic nervous system was dysfunctional. I had all the common symptoms: breathlessness, fatigue, inability to regulate temperature, brain fog and even at one point, a suspected blood clot on the lung. When it was apparent that I had Long Covid I was referred to an occupational therapist working in the community. This was a change in my luck! Despite all of my struggles, having the support of an occupational therapist has meant I can not only be hopeful for the future, but I can also manage the day-to-day effects of living with Long Covid and all my underlying, pre-existing challenges. The occupational therapist's approach has been truly personal to me and my family. I can’t explain how supportive they have been, helping me live my best life.
This included getting me to understand and, crucially, to work on pacing and energy management. They emphasised the importance of regular gentle exercise, eating well and looking after myself and managing my symptoms, not being ruled by them. They offered me so many interventions to make my life and my recovery easier. They helped with finding solutions to the practical problems COVID caused - like offering small pieces of equipment to help with everyday tasks.
For me, good occupational therapy support has meant being able to adjust psychologically and environmentally to the challenges that Long Covid has brought. Having a good, solid wellbeing strategy that looks at what is achievable and manageable means I have structure to live my life as I want to and importantly get back to doing the things I enjoy. I couldn’t have done any of it without the help of an occupational therapist. Quite simply I might not be here today to write this without them.
By Isaac Samuels
For more information about how occupational therapists can help in recovery from Long Covid, visit our Long Covid resources section.
If you want help to be put in touch with services supporting people with Long Covid you can contact us on practice@rcot.co.uk.