Thread by @amyismall

#longcovid recovery
A thread.
Whilst I write this I'm painfully aware of so many people with #longcovid who are far from recovery but at the same time I want to give hope.

Last September I lost my job as I was too ill to work due to #LongCovid
I was breathless, tachycardic, full of brain fog, and had tinnitus and myalgia. I had pyrexia daily and awful post exertional malaise that would hit every time I tried to do anything.

I went onto discover many of my symptoms were related to the #PoTS I had developed as a consequence of my #covid19 infection.
I started medication and luckily it had a good effect on me, allowing me to slowly build myself up to go back to work as a locum GP.

Over the coming months I had to change medications due to undesirable side effects of the beta blockers - my psoriasis went bonkers, my mood was low. I tried initially tapering the meds to see what would happen but I returned to being breathless and tachycardic within a few days.

The medications enabled me to function. I was able to work and slowly build up my stamina, increasing the number of steps I could do. I would still have setbacks and needed desperately to focus on #pacing which I had learnt all about here, on Twitter, from #pwME 🙏

I changed my diet considerably with the help of an excellent nutritionist @MazzoniNutri
I learnt that sugar and dairy were inflammatory. Cutting these out, alongside caffeine and alcohol helped avoid highs & lows, and I think had an important impact on my fatigue in particular

I realise this is a luxury many cannot afford &which is why I'm desperate that we have embedded nutritional support alongside good clinical care and AHP support.
Many of us have forked out on supplements but a lot of us are just winging it - we need advice and support for this.

I tried osteopathy and acupuncture as well....anything to try to feel better, anything to try and get my former self back again.
I tried yoga but it made me too dizzy and breathless - yes yoga made me breathless.

But by April - a year after I got sick I was able to walk 15K steps a day. I didn't do it every day but I didn't get #PEM either.
In May I slowly started a couch to 5K programme. I did it when I felt like it and I never pushed myself if I didn't feel well enough to.

Over the summer, on holiday, I practiced drinking alcohol😁when on holiday - and hooray I finally tolerate it again 🍾
On my return from holiday, having done at least 10K steps per day, able to do a Go Ape style assault course and several jogs I started to taper my meds.

Here I am today. No longer on meds. I've just completed my second #bodycombat workout from @LesMills in my lunchbreak and I feel bloody brilliant.

So my message is this: #longcovid is real. It is not psychological. #CBT and #GET are potentially damaging.
We need access to specialised medical care to access the treatments we deserve to help us to recover and get back as fully functioning members of society.

For all of you who feel you are a long way off this - I am not turning my back on you. I will continue to lobby for better: care, recognition of this illness in children as well as adults, support from @DWP for those of you who cannot work.
We're in this together.
#countlongcovid