STIMULATE-ICP Patient Blog
International Long Covid Awareness Day
15 March 2023
STIMULATE-ICP's patient advisor, Antony, blogs on his trip to London for Long Covid Awareness Day on 15 March 2023. You can follow Antony and Claire aka 'Long Covid Casebook' on Twitter:
@AntonyLoveless
Claire and I joined our friends @KeyWorkerPetUK last Wednesday in London for Long Covid Awareness Day, travelling from all over the UK. At great cost to us all health-wise, we did it because it was important. We started with a meeting at the Royal College of Nursing. We were interviewed by @gemmamitchell92 of the Nursing Times. Whilst @KeyWorkerPetUK gave an interview to Channel 5 and Beth Rigby of Panorama, Claire collapsed.
I went outside to get a Black Cab, and we travelled to 10 Downing Street where we were due to meet Layla Moran, Debbie Abrahams, APPG Coronavirus and others to deliver the @KeyWorkerPetUK and a copy of our book by the PPI group of STIMULATE-ICP.
However, Wednesday was a perfect storm. A Tube Strike, a mass protest by teachers in Trafalgar Square, Budget Day and
#LongCovidAwarenessDay saw us spend 90mins in the cab to go from Cavendish Square to Covent Garden with £50 on the meter. There, we got out and walked. Claire was leaning on me all the way. We stopped several times, and eventually got to
10 Downing Street where we met up with
@LaylaMoran,
@CM_7505, @sasperillaz and others.
Layla Moran is just lovely. She’s a trailblazer for
Long Covid. She’s empathic, tactile and kind, as is
@Debbie_abrahams. We spent a bit of time chatting, then it was time to present the petition and our book at No 10. That done, and chatting to protesters along the way, Claire and I walked to a pub on Westminster Bridge Street for drinks. I ordered, placed them on the table and then collapsed and fell backwards. A kind stranger behind me lifted me up. Whilst there, we met a lovely Swedish family at the next table and caught up with Rachel from
@KeyWorkerPetUK
After some refreshments, we left the pub and walked out into a downpour. We looked for a cab, but predictably, there weren’t any. What to do? We were wiped out, utterly exhausted and unable to walk to our hotel in York Road, SE1. Then we saw Pavel, and his rickshaw…I can’t remember the last time we laughed so hard. It was so abstract and bizarre, we were giggling all the way to our hotel! I’ve never been in one before, and it was utterly delightful!
We met for dinner that night. We were deliriously fatigued, dogged by cognitive impairment, wiped out, but buzzing! What a day we’d had! It’s hard advocating and fighting with
#LongCovid, but it’s so vital if we are to get the support we all need.
Jasmine's Advocacy Work
29 November 2022
A profile on STIMULATE-ICP patient advisor Jasmine.
My name is Jasmine Hayer and I’m now a long covid advocate, writer and entrepreneur, 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.
Never been seen damage…
Despite severe respiratory and cardiac symptoms, I was medically gaslighted for nine months at a renowned London hospital, which led to the onset of a devastating mental breakdown and having to sign off work.
I then became a flagship patient at The Royal Brompton Hospital who were ahead of the curve, diagnosed with never-been-seen-post-covid-damage to my lungs, heart and blood, including becoming one of the first patients to have post-covid ‘micro-clots’ found in my lungs via a VQ scan, defying the radiological process.
I shared my diagnosis with the world through my blog My Long Covid Diaries, which went viral. With the help of the BBC, I was able to publicly shine the spotlight on hard to detect post-covid blood clot phenomena occurring in non-hospitalised patients, defying the ‘normal testing protocols’. Most recently, I was diagnosed with a new medical discovery of “circulating microthrombi” in my blood via a study led by Professor Marie Scully at UCL.
Prior to long covid…
I was a community growth expert alongside a background of holistic studies, which you can read more about here.
Becoming a long covid advocate gave me purpose…
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 trial.
Currently…
I still have severe limitations to speak and walk per day, however I’m world’s apart from where I was, thanks to colchicine, which resolved the ‘fiery storm in my chest’ and a nutraceutical called Vedicinals, which increased the oxygen returning to my heart by 56%!
I continue to fight to get into trials, sharing the trials and tribulations of my journey to get better, being an ambassador for covid:aid, alongside working on My Symptom Tracker to help other patients: www.mysymptomtracker.co.uk
Jasmine says…
“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.”
Covid after Long Covid
25 July 2022
Blog post by STIMULATE-ICP patient advisor Rachel.
My name is Rachel and I am a 34 year old registered nurse, I live in Devon with my husband and two young children. Prior to the Pandemic, we had a blissful life living between the moors and the sea, lots of regular walks, swimming and generally playing outside in the fresh air. I work in the NHS and I love my job, the sheer joy of seeing people recovered and ready to face the world again after the challenging journey of illness or surgery, it just never gets old! I have heard stories from people from of all walks of life, and I feel privileged to have cared for the people that I have done.
Covid has robbed me of all these things.
I contracted Covid working on a Covid ward in October 2020. From there, I brought it home and gave it to my husband and children. I was acutely unwell for nearly 12 weeks, and although I didn’t require hospital admission, I had several stints to A&E with low oxygen, pericarditis and chest pain. I never imagined that this horrendous virus would still be causing me so many problems today.
I remain off sick from my beloved job. Unfortunately, my husband and I both have long covid. It is a mixed blessing. I have heard many stories in the local long covid support group I formed, many people feel isolated and alone when their partner doesn’t understand their condition. The fact that we both have it, has allowed us to work together, be truly empathetic to each other, and understand the daily challenges we both face. However, when we are both struggling with our symptoms, life can very difficult with 3 and 4 year old boys to care for. The buck stops with us. Every day is a careful negotiation of achieving the essential daily tasks (showering, cooking, caring for the children) and the not so essential (laundry, housework, gardening). We have used our savings to make our home more long covid friendly. The lush green lawn has gone and replaced with artificial grass. The hedges have gone in favour of a fence. We have had a playroom built and a new utility area made indoors rather than outside. All this has been done to ensure that we have enough energy to care for our children. We can no longer afford to waste energy on cutting the grass, trimming the hedges or going outside to an out house to do the laundry.
The most upsetting thing for us both, is seeing the affect our long covid has had on our children. There are days where we can’t get out of bed, let alone do our much loved walking along the beach or swimming. Our children are suffering because we are physically unable to do the activities we used to take for granted.
Imagine our horror, when despite great care to socially distance etc, we contracted Covid again. Those dark lines on the PCR tests created a stomach churning fear. What does this mean for our long covid? Would it get worse? Could it get worse?
18 days ago I tested positive for Covid again. I had a good 6/7 days of feeling really unwell. I felt flu like, had a raging temperature that I couldn’t shift, and cold symptoms. It went straight to my chest causing an infection. With antibiotics and medication, as soon as I got worse, I got better again. By the end of the week I was back to my long covid baseline. I was so relieved, I am used to this level of discomfort now, at least it hadn’t got worse. Another week goes by of my usual symptoms, when BAM! One of the worst relapses I have had begins. The widespread joint and muscle pain is leaving me unable to rest, sleep, move. It is all encompassing. Brain fog is no longer a strong enough term, it’s more like Brain sledgehammer. Blurred vision, dizziness, widespread pain, headaches, insomnia. It’s all back with a vengeance.
So what does this mean? Who knows! But one thing for sure is this, knowing teams like STIMULATE-ICP are working hard to help people like me and my family, gives us me hope that one day, I might be the other side of this. And without hope, all is lost.
