Why a diagnosis took 11 months and 4 days to find and why it’s so medically baffling A quick reminder of my current symptoms (since Covid, March 2020) Shortness of breath and tight chest when walking / talking / bending over (currently more than 20/30 minutes). Exercise intolerance + post-exertional malaise (worsening of symptoms after minor physical or mental exertion). Random…

The last few months have been more long-covid-trauma-coasters but I made it through… Fourteen long covid updates *Trigger warning* You know what I’m touched by? The love that I receive from my Instagram community whilst I’m not online. They know that ‘something’s up’ if I’ve gone quiet… Many in the long covid world have asked me…

Why holding space for all thoughts helps me to create psychological flexibility for what I’m to be told… This conversation with the various archetypes of my mind (and soul) is influenced by my studies of Stoicism and Acceptance and Commitment Therapy. I'm often asked how I cope with having so many intense medical tests and how I manage my mental health whilst waiting for the results. I have a system now which I'll…

I shared my experience as a long hauler from the first wave, presented The Hidden Voices of Long Covid Project and what changed my recovery I was one of fifty-one people on a video call with the NIHR On the 1st November, I presented to the National Institute for Health Research (NIHR) about my insidious experience of long covid for nineteen and a…

A spontaneous instagram poll led to sharing lived experiences and surprising results Instagram poll survey from my long hauler community Okay, so this is by no means an in depth survey but an Instagram poll. But you can take from this what you will. This survey came about spontaneously on the 26th September. I'm travelling to Portugal next…

The answer is “not yet” — here’s why. *** Scroll to the bottom *** IMPORTANT: My specialist agrees with my decision to not have the vaccine (yet). Due to the severity of my multiple diagnoses. *This confirmation is based on my case alone.* If you are blessed to be in good health, please remember this: there is…

How an exercise test and a high dose of colchicine led to a long covid breakthrough To give you some context about my situation: My pre-covid diagnosis: no diagnosis / symptoms except low blood pressure My post-covid diagnosis: blood clots in right lung which dissolved thanks to blood thinners, hypoperfusion defect in right lung (ongoing blood thinners), post-covid…

I was so moved by their responses, I had to share them with you I posted this on Instagram. In the post, I asked what “what is your deepest learning right now?” Fellow long covid warriors shared their insights… I was so deeply moved — they came straight from the heart. I resonated with every…