Updated: Apr 28
My Story
It all started on the 25th of March 2020 when I was hit by Covid, between day 5 and 8 I had difficulty finishing my sentences, difficulty to stand up and even lying down my head was spinning. The doctor told me that I had pneumonia. I was considered quiet severe and contagious for 25 days. I was bedridden for 8 weeks, during those 8 weeks I went to A&E 4 times. I suffered from terrible covid waves, throacic pains, breathlessness, unbareable pains throughout my whole body, chronic shivers, pericarditis, the left side of my face was paralysed and I generally felt horrendous. The inflammation went from head to toe, I could feel my whole body being taken over by the virus. I consulted my GP by video every 2 days. My blood tests started to show up with abnormalities, my pancreas was too high, my thyroid was increased, my potassium was too low, my d-dimères were increased but they couldn’t find an embolism. Next of all it was my digestive system that got hit, I looked like I was 6 months pregnant. Then there was the problem with my tongue, my body was shaking, I was still getting very breathless, loosing my hair, suffering with ongoing chronic eye and sinus pain that hadn’t stopped since day one ; then to top it all off I started to lose my voice. I couldn’t take anymore.
In May 2020 the support groups on facebook appeared. It’s from there that I felt less alone, less sad and so much stronger. I could see the thousands of personal stories being shared in France, the UK and then thankfully in June I found the wonderful Irish support group who were just so supportive. I knew then that I wasn’t crazy or the only one suffering. I was going back and forward for tests daily nobody had answers but in July 2020 I pushed for a lung scintigraphy. The results weren’t good, I had lost in lung capacity and I was also told that I had a chronic lung pathology. I was prescribed steroid inhalers, anti-coagulants for my d-dimères which were still high, I was also prescribed respiratory physiotherapy 4 times per week during 6 months, I had to walk 5 to 10 minutes with ventoline. I remember how difficult it was because I had to stop all the time. The stairs were my enemy and still are. Then I went to see a 2nd ENT specialist for my dysphonia, the 1st ENT said that my voice problems were pyschological !! The ENT did a fibroscopy straight away and he announced that my left vocal cord had been damaged. He prescribed me weekly speech and language therapy sessions and he told me that the recovery would be long. I was devastated between my lungs and my voice.
In September 2020 I still couldn’t accept that I was sick and that I couldn’t go back to work, so I tried to work. It was the worst thing that I could of done, I suffered so much and my condition got worse, I lost more lung capacity. My respiratory specialist put me on remote working and I finally accepted that I was sick and not able to work or to be in contact with people. In November 2020 my medications were increased, there were a lot of unanswered questions as to why I had lost more of my lung capacity. I was extremely breathless even when I was sitting down. I was really upset as it was difficult for me to walk again. Since May 2020 I fought for answers to all my symptoms, it was exhausting, I understood that it was a new illness but I was really under the impression that the doctors weren’t even trying to understand. I was so lucky to have a fantastic GP who shouldered me from day one and after having endless medical appointments and tests, I then found a respiratory specialist, a cardiologist, 2 physiotherapists, a speech and language therapist who showed me so much empathy. Every time I went somewhere I had to fight for Long Covid, test after test, I was the 1st LC patient for most of the people that I met.
In January 2021 I finally met a fantastic specialist who wanted to open a LC clinic. He welcomed me into his office with so much kindness. I left his office feeling full of HOPE and relief. I knew that there was no miracle but the most important thing was to be HEARD and to be LISTENED TO. My specialist asked to see me every month. He gave me diagnoses for some of my symptoms, he confirmed that my medications and treatments were correct. He sent me for lots of further tests and in June 2021 he phoned me and asked me to advocate in the local newspaper . Living with Long Covid is like being on a constant roller coaster, people don’t understand they say to me all the time BUT PATRICIA YOU LOOK GREAT, people have no idea how difficult it is you wake up everyday not knowing how you will feel. I’m 17 months in now and my daily ongoing chronic symptoms are debilitating fatigue, breathlessness, loss of lung capacity, chronic lung pathology, dysphonia, chronic pain, chronic inflammation, ongoing abnormalities in my blood results, dysautomonia and POTS and brainfog.
My life has been turned upside down. In February 2021 the French government voted Long Covid in as a longterm illness. It was a huge victory. I fought to be recognised and in April 2021 I received the paperwork to say that I’m fully recognised, I was truely delighted all my medical expenses for Long Covid are fully covered until mid 2023 . It is such a relief to know that I don’t have to fight anymore but I will continue to advocate for all Long Covid patients so that awareness will be raised for this new illness and so that ALL Long Covid patients will be heard and recognised too . In September 2021I will be hospitalised for 3 weeks in a rehabilitation clinic where they have adapted a program for Long Covid patients. I’m very anxious about going but I grasp onto every bit of hope of making some progress and slowly getting my life back 😊
Most Challenging Aspect
The most challenging aspect was having to fight to be heard, being alone and people judging me. Once I got through all of that and got the support and empathy from my medical team things became easier even if I was still suffering.
Most Positive Aspect
Seeing that I have such a supportive family unit, supportive employer, colleagues and friends and I also met the most wonderful people through the online support groups.
Hopes for the Future
That every Long Covid patient gets officially recognised and that the governments release money for research to be done and a treatment to be found.