Patient Journeys & their stories

Lucy McCarthy, 52 Psychologist

My name is Lucy McCarthy, I’m 52 and a post-doctoral psychologist specialising in forensic mental health research. I have always kept myself fit (cycling, open water swimming and skiing) and I have no underlying health conditions, however I have been unwell since returning from northern Italy in February 2020. I was not tested for Covid-19 at that time as my symptoms (chills, bone pains, fatigue, hoarse voice and sudden loss of sense of taste and smell) did not meet the NHS criteria for a test, despite where I’d returned from and despite asking for one. 

My initial symptoms were mild but persisted and I found it increasingly difficult to concentrate on routine tasks. My symptoms would improve for a while then come crashing back with a vengeance-often on a Friday evening after a busy week with work. I experienced a dry cough with mild pain on inspiration, nettle-rash flare-ups, strange raised skin lesion that took months to resolve, and painful joints; even old scars that hadn’t given me any problems for years suddenly became sore once more. At the time I viewed these symptoms as minor irritations-they were definitely out of the ordinary but not causing me any real concern. This was about to change. 

Over the early summer I experienced unprovoked episodes of tachycardia and heart palpitations and I had a number of neurological issues that lead me to contact my GP. I experienced problems with my speech and word-finding; my sense of balance was off too. Many of these symptoms have now resolved, others persist. At the beginning of September I felt that many of my symptoms were significantly improving; my energy levels were back to normal and I felt like I had my life back. At the time of writing (November) I have just experienced a small relapse and a return of some my original symptoms (chills, bone pains, fatigue). I am exhausted by this illness, but knowing that I have had eight good weeks gives me genuine hope that I will get over this in the long-run. 

Reading Paul Gardner’s first blog on Covid-19 in the BMJ was an extremely important event for me; his experiences were so similar to mine and I felt a huge sense of relief and validation from knowing someone else was experiencing similar issues. I cannot thank him enough for writing that piece and signposting readers to the on-line support groups. I share my personal experiences here in the hope that others may find some validation of their own experiences of this insidious illness. 

Paula Turk

13th March this year, I was glad to have the day off work as I felt exhausted, I have just worked 6 days in row a total of 56 hours, I thought my tiredness was due to that, during the weekend I developed a sore throat and a headache.  Lockdown was being suggested by some politicians and I had already decided to cut out everything other than work from thereon.  People had started to bulk buy toilet paper.  I realised it was probably COVID-19 when on the Monday I had to call my works and said my symptoms aloud to my manager.  I expected to take a few days off work.   I have never been back. I was very ill but not enough to receive hospital attention.  I never had a positive test. My adult daughter and myself both at home I’ll during the next two to three weeks, I suffered from hallucinations, had a high fever, lost track of how old I was and whether I was a child or adult, I also thought my cat sleeping on my bed was a severed head. I failed to manage to get any medical help. I couldn’t breathe and wore a CPAP machine all day.  My mind improved gradually but my breathing worsened. I developed pneumonia and required antibiotics.  My daughter got well again left only with a bad cough, I struggled. I gradually noticed new pain, especially in my limbs, blurred vision, sensitivity to sounds, to light, nausea, gastric problems.  I expected to get better. When by May- June I was seeing no improvement I began to push myself to exercise. I was fed up of calling into my job as a brain injury support worker, and saying I’d be off again for “ just two more weeks” After I exercised I would relapse, develop flu like symptoms, I got tinnitus, I would faint, collapse, pass out. When I heard about other people’s experiences like mine I cried. I wasn’t alone, I wasn’t a malingerer. I have now been ill for 7+ months. I am no better. I’m still tired all the time, and in constant pain, I  can not walk more than a few steps, I need a wheelchair to go out. I can’t bathe unaided, I can’t cook, my brain concentration stops me from reading, writing, or even enjoying TV.  I can’t walk my dog.  I am often incontinent and have to wear a pad, I can’t remember words correctly.  I have lost myself. I had a job that I loved. I took my dog on long walks, I learned Spanish, I was writing a novel, first draft completed.  I was overweight but I had a life I lived and enjoyed. I took pride in my appearance, wore makeup and loved clothes. 

  Julls Nelson. I’m 35 years old and live in Fontana California. I tested positive for Coronavirus on 3/31/20 and had it for 60 days. I began to have problems with sinus pain and pressure during and after the virus. Finally went back to work as a sales representative for a greenhouse manufacturing company only to notice the difficulty concentrating, shaking hands and dizziness even while sitting. Then I noticed a twitch in my left thumb and index finger that lasted about a month. From there my symptoms progressed with headaches, heart palpitations, chest pain, fatigue, stomach issues, pain in my muscles and joints, anxiety and depression, on/off blurred vision, shortness of breath, tender lymph nodes in neck and armpits, allergies and smell sensitivity,  pain on bottom of feet, numbing in hands and arms and insomnia. Seven months after my first positive test result and I’m still suffering from the aftermath of Covid-19. I’ve had numerous blood work, an EKG, echocardiogram, stress test and CT scan on my heart. Labs have always come back normal, all other tests have shown some kind of issue but nothing significant enough to be concerned about. Just finished doing another set of labs with a new doctor after I felt my primary could no longer help me. I’m hoping my new doctor might be able to provide me with something, anything! I’m desperate and my depression is starting to weigh down on me. I’m no longer the person I once was. I don’t smile because I’m anxious. I can’t stand or walk for too long because it hurts my whole body. The fatigue and insomnia are in full control. I’m limited and at the mercy of this new Coronavirus destroyed body and it’s hard enough trying to learn to accept it but even more painful to see my husband and children trying to adapt to it. I just want to feel normal again.

.  Michelle Lloyd & family, UK

June- tested positive for Corona Virus, symptoms; I was ill for 4 weeks, husband 14 days, youngest (5) 10 days, middle son a few days and our daughter was ill for 3/4 days. We are now in October and sadly I can’t say I am fully recovered.The AFTER EFFECTS have been just as gruelling in some ways for myself and for my husband and youngest son. Three of us have now been diagnosed with post covid syndrome(long tail COVID) I have in the last month started to regain my taste and smell back- thankfully but it has taken months!! Daily,  I was having worries with breathlessness, fatigue, tinnitus, sore eyes, burning in my bones, muscular pain, brain fog, lack of concentration, balance, lady patterns all over the place, hair loss, stress incontinence due to the severity of the cough and anxiety. I had chest X-rays, bloods and ECGs. The last Friday of the summer, I ended up in hospital – I’d already had several ECGs/ that had flagged up changes that we were monitoring with the heart due to covid. My blood pressure had dipped, I had awful fatigue, anxiety and chest pain, muscle spasms and tingling in the face. I have had numerous tests and scans and still have more to go, the hair loss is being monitored and I’ve been advised to keep a diary and log every symptom of long covid going forward. I am now awaiting an echo-cardiogram to further investigate along with other tests. The fatigue experienced includes a complete loss of strength and severe weakness – I can’t open cans/ tin, calpol or bleach bottles!!! (Ridiculous and trivial but a daily battle!) I have learnt to adapt to a new way of life at present despite hating the fact that it affects me frequently! It is debilitating and frustrating and slowly drags you down! I find I fall asleep in people’s company from having not done a lot, I can use energy to do some things and then have to literally go home and sleep to recover. I have become irritable easily which isn’t unusual but more frequently these days too. So, now I know if I have a busy day one day I need to rest the next etc, it’s not me, it’s hard as I used to be quite athletic, loved and was/ an a competitive swimmer, I loved running and now I feel severely hindered, that said at least I am alive and so are my 3 children and I am very grateful for that but that doesn’t mean it’s easy and sometimes it’s so hard to put the brave, happy, smiley face on that everyone has come to know and pretend all is well- but that’s why I do! It doesn’t mean you aren’t feeling pain, or severe tiredness/ fatigue, it just means you are trying to carry on! My husband has experienced breathing issues, muscle pain, headaches and severe fatigue, it has affected him badly at times where he needed time off from work ( he was pressurised to return- I think too soon) he was in and then sent home, went in again and then had to be off again eventually leading to his employer sadly letting him go and expressing that they didn’t believe in POST covid syndrome despite seeing the doctors note!!! It has caused a lot of stress and worry- physically, mentally and financially. Our youngest has suffered with fatigue badly to the point where he used to be such an active little boy always running around, loved sports but for a long time after he would cry from being too tired/ exhausted and have to be carried, he literally would collapse to the floor in exhaustion this went on for several months, he still suffers with it but it seems to be getting better slowly.

Michelle and family x x

.  Pam Godin

My name is Pam Godin. I live in the Yukon, Whitehorse in Canada. My journey with suspected covid-19 began back in February when I returned from a trip to Mexico. I was so sick I did not leave my bed for 4 days. At the time there was no testing and when it did open up 3 weeks later I did not qualify for testing. As spring arrived I noticed extreme fatigue and brain fog and lack of interest in physical activities. But then everything changed in July for me. I began having tightness in the chest, body wide inflammation, sinus issues and headaches…I never get headaches. Then the neurological issues began. As a scientist, I found it very hard to even write an email and could not even complete a simple math calculation. I was forgetting everything and could not find words or make sentences. I am now 283 days in and doctors think I have Autoimmune Encephalitis. I consider myself a long hauler and battle with my health everyday but I am hopeful that my body will heal in time.

Laura Pastiou, 31, London

It’s hard to explain in a short letter what happened to me in 10 months since I’ve contracted the virus.  It was brutal, violent and made me feel several times during this journey that I would die. Everything changed in my body. I had to learn every day how to cope with my symptoms and create the balance to not loose my mind, because symptoms most of the time are unbearable, and doctors telling me all the time that I am fine, without any deeper investigations it didn’t help.

Dizziness, headache, kidney pain, heartburn, muscle pain, chest pains, chronic fatigue, peeling skin, lost of taste smell and hearing, muscle spasm, vertigo, tinnitus, shortness of breath, loss of memory, diarrhoea, inhaler on regular basis,  stomach pain, sleepless nights and days, difficulty to sleep on any other side of the body or to take a shower, dry skin( although I was drinking 3L of water  every day), loss of hair, loss of appetite, and the list continues with symptoms that I can’t explain. I had several days during this period when I couldn’t even talk, because i was in big chest pain due to the vibration of my voice, also on my first 4 months I struggled with my breathing due to low or high temperatures. Ive also developed an oculogyric crisis from pills.

Stephanie Taylor

.. Louise Barnes, Suffolk, UK

Infected at hospital March 2020.

A former detachee to the UK Government out in Brussels, Louise is a passionate Geographer and was interested in the geography of the disease. “I set up the group as I wanted to see what patterns of the illness were being experienced in other countries and globally. I knew I couldn’t be alone and as a pandemic I felt it was important to see what similarities were being reported. I started the facebook support group shortly after falling ill and realising I wasn’t getting better and that a post viral illness was ‘evolving’. In July I started looking into a website to offer a global info portal, the first of its kind, rather than just a website. We are building this up now to offer more support. We were the only group to catalogue the entire disease from its onset, documenting it with photos, graphs, timelines, effects and have been working with numerous Government and patient stakeholders throughout. We are also involved extensively in policy making for the disease.

We identified ongoing covid as a complex ‘post covid 19 syndrome’ early on in June 2020. We have changed the group name accordingly but as this is still undecided we may adapt it again in future as nothing is yet certain! We call for more research into ME/CFS and post viral illnesses that allow those without a positive test to be admitted as part of the entry criterion.

Like so many I contracted the initial phase 1 symptoms of infection and went on to develop phase 2 and 3 of the illness by week 10. I started documenting the illness as I saw it changing and evolving as a complex post viral illness and post covid syndrome. I have confirmed heart and liver damage and recently I had facial paralysis and speech issues. Being one of the admins means I am able to see the full scale of the disease and have used my contacts accordingly, working across all levels from the early days in the NHS, NICE, NIHR, Government, stakeholders, patient advocacy groups, with the media and charities as well as researchers globally since May 2020 campaigning for support, recognition and engaging in dialogue.