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…

When you’re chronically ill, it can spark hope in the lowest of times.

I NEEDED to see this.

Here’s a little story..

Last week, my specialist told me that Covid has damaged my blood vessels. Not only that, but I’m going to have a scan to see if there’s a “hole in my heart”. …

Five major insights that I learnt this week…

I’m here to translate the madness of my recovery into language that’s understandable for anyone who’s not a scientist or specialist, which is pretty much all of us…

I’m at the point where I can no longer scour medical journals in the daunting attempt of trying to decipher medical science speak.

It’s overwhelming.

I’ve been desperate to understand what’s happening to me in layman’s terms & why.

My specialists are…

When everyone around you is telling you something that every fibre in your body is rejecting, what do you do?

This was taken in September 2020.

I tried ignoring my symptoms because no amount of holistic or pharma meds were working. Ignoring my shortness of breath and the fiery storm sweeping through my lungs.

Continuing to…