Long Covid Voices

Rachel

My name is Rachel and I am a 35 year old nurse, married to another long covid sufferer. We have two young children and live in the beautiful Westcountry. 

I contracted Covid at work in October 2020 and have been left with life changing problems since. This includes permanent hearing loss, MCAS and many other debilitating and ongoing symptoms. As my illness and pain permits, I spend time advocating for people with Long Covid, campaigning to get Long Covid recognised as an occupational disease as well as running a local Long Covid Support group.

I hugely endorse the work of the STIMULATE-ICP research team and I am very grateful for the time and energy put into trying to help people like my husband and I get better. My hope for the future is better understanding of Long Covid and treatments that will help us get back to some version of the happy and active life we led. 

Andy

Leicestershire

My name is Andy. I have struggled with the symptoms of Long Covid for 19 months. I am pretty much house bound and find any type of activity hard work. Before becoming ill I was a busy and active man with many interests. I loved my job as a Carer and regularly tended our allotment, played sport with my son and enjoyed being part of our local Church.

My faith has very much kept me going and so has my family. I am pleased to be part of the STIMULATE-ICP team to help others navigate this unknown path. There are many uncertainties in life but with hope we move forward, no matter how small the steps.

Kim

Kim is a first-waver, having had Covid and Long Covid since March 2020. She has ongoing symptoms and attends the UCLH Long Covid clinic, and has participated in a number of research studies, including Coverscan, MEXICO, React-LC, DIAMONDS and WILCO.

Kim hopes to add value to the trial by providing input based on her experiences of medical self-advocacy and having been a participant in other trials, and hopes that her participation can help STIMULATE-ICP find answers to help current and future Long Covid patients.

Rachel

Leicestershire

My name is Rachel and I am a carer for my husband Andy who has Long Covid. Andy caught covid through his work as a carer in January 2021. Since then Andy has been extremely ill with a range of debilitating symptoms. It has definitely changed the dynamics of every aspect of our life. I would sum it up by saying we always take each day as it comes and have a plan B and C for every occasion!

Our joint aim and priority is always to make sure this dreadful illness does not impact on our amazing son.

I am self-employed teaching Acting and also do some tutoring. This has been a blessing as I can work it around looking after Andy and our son. We are held together, when the going gets tough, by our faith, family and friends.

Antony and Claire

Southend-on-Sea

We are Antony and Claire, two former professionals who caught Covid-19 at the end of December 2020 and have been left permanently disabled with Long Covid. Antony has been diagnosed with Post Orthostatic Tachycardia syndrome (POTs), Dysautonomia, and neutropenia, which has left him immuno-compromised, whilst Claire has a range of debilitating symptoms.

Antony, 54, has had a long and varied career that encompassed periods as a soldier, Metropolitan Police officer, city broker, best-selling author, journalist, photographer and ghost writer, CEO of the UK arm of a Chinese multinational, and more latterly, as lead investigator for SCPS at London Gateway port. He is the author of a number of Sunday Times Bestsellers.  He was diagnosed with Adult ADHD in 2018, and in 2018, he became an altruistic kidney donor. He used to enjoy flying, motorbikes, travelling, cooking and current affairs. Now, he runs www.longcoviddiary.com with Claire, is step-dad to Fleur (13) and he advocates and campaigns in the UK for #LongCovid recognition, research and rehab.

Claire, 53, is a qualified nurse who spent several years working in a busy A&E department at an NHS hospital in Essex, before doing a further degree and qualifying as a health visitor, where she visited expectant and new parents, giving support and health advice, as well as performing clinical health checks for mums and babies. She is a mum of four (three grown-up children and a 13 year old daughter, Fleur). Earlier this year, she and Ant became grandparents for the first time when their grandson was born in May. Now, Claire spends her time recovering from Long Covid, running the website when she's well enough, and being a mum to Fleur.

Mag

London

My name is Mag and I am a 44 year old Irish woman living in London.  I had worked as a technologist for 20 years in England, Australia, Germany, America and Canada both coding and leading people.  I love movement and dogs and am a very outdoors loving wanderer by nature.

I contracted Covid in July 2020 and I have been on a steep learning curve since in trying to handle my new life - I am not the person I used to be.  I sometimes can do things (conservative) but I have to stay strictly within my energy lane or the payback is suffering. 

I have had to change careers from technologist to coach to conserve energy and I work part time trying not to tip into the pain zone.  Just like grief there are lots of stages and mostly I feel acceptance now that Long Covid and I share a life experience together.  It's hard and I think I am on the lower end of the scale. 

Delighted to be part of STIMULATE-ICP - it's a privilege to be part of a working group that are so dedicated to the cause and also lovely humans.

Jasmine

Bedfordshire

My name is Jasmine Hayer and I’m now a long covid advocate, writer and entrepreneur and ambassador of covid:Aid, alongside being a severe long covid patient from the first wave - March 2020. 

Tragically, I lost my ability to walk and talk and subsequently my job, life in London and dream of becoming a yoga teacher - now I’m cared for by my parents in Bedfordshire. 

My nationwide community project ‘The Hidden Voices of Long Covid’ (over 200 heart-wrenching stories from long covid sufferers in their own words) features as a resource for the study. Professor Ami Banerjee (co-lead of the trial) asked me to present the project to the NIHR alongside my story of apixaban and colchicine improving my recovery - the same/similar drugs administered in the STIMULATE-ICP trial. 

STIMULATE-ICP has given me a unique insight as a patient, to be ‘on the other side’ of the system and understand the struggles faced by physicians treating long covid patients whilst building a trial of this magnitude. I’ve been pleasantly surprised by the centering of patient’s lived experiences in this study and I believe many studies can learn from this empowering approach regarding PPI involvement.

You can read more about Jasmine's story here.