Long Covid Casebook Profile picture
Mar 20 14 tweets 13 min read Twitter logo Read on Twitter
THREAD. Claire and I joined our friends @KeyWorkerPetUK last Wednesday in #London for #LongCovidAwaneressDay, travelling from all over the UK.

At great cost to us all health-wise, we did it because it was important. We started with a meeting @theRCN ImageRachel and Cass at the Roya...Claire being interviewed by...
@theRCN, we were interviewed by @gemmamitchell92 of the @NursingTimes. Whilst @KeyWorkerPetUK gave an interview to @Channel5N, and @BethRigby of @BBCPanorama, Claire collapsed. 2/ ImageImageImageImage
I went outside to get a Black Cab, and we left at 13:00 to travel to @10DowningStreet where we were due to meet Layla Moran, @Debbie_abrahams, @AppgCoronavirus and others to deliver the @KeyWorkerPetUK and a copy of our book by @amibanerjee1 and the PPI group @ucl. 3/ Image
However, Wednesday was a perfect storm. #TubeStrike, a mass protest by teachers in Trafalgar Sq, Budget Day and #LongCovidAwarenessDay saw us spend 90mins in the cab to go from Cavefish Sq to Covent Garden with £50 on the meter. There, we got out and walked 4/
Claire was leaning on me all the way. We stopped several times, and eventually got to @10DowningStreet, where we met up with @LaylaMoran, @CM_7505, @sasperillaz and others 5/ ImageImageImageImage
Layla Moran is just lovely. She’s a trailblazer for #LongCovid. She’s empathic, tactile and kind, as is @Debbie_abrahams. We spent a bit of time chatting, then it was time to present the petition and our book at No 10 6/ Image
That done, we walked along Whitehall, where we bumped into the wonderful @snb19692 He’s a perfect gentleman and we saluted his tireless campaign to hold the Tories to account 7/ Image
After chatting, Claire and I walked to a pub on Westminster Bridge Street for drinks. I ordered, placed them on the table and then collapsed and fell backwards. A kind stranger behind me lifted me up. Whilst there, we met a lovely Swedish family at the next table 8/
This is Ulrikke and her dad, and yes, that’s our friend Rachel from @KeyWorkerPetUK in red. She joined us there, we said farewell to Ulrikke and caught up on the day’s events. 9/ Image
After some refreshments, we left the pub and walked out into a downpour. We looked for a cab, but predictably, there weren’t any. What to do? We were wiped out, utterly exhausted and unable to walk to our @premierinn in York Road, SE1. Then we saw Pavel, and his rickshaw… /10
I can’t remember the last time we laughed so hard. It was so abstract and bizarre, we were giggling all the way to our hotel! I’ve never been in one before, and it was utterly delightful /11 twitter.com/i/web/status/1… Image
We met for dinner that night. We were deliriously fatigued, dogged by cognitive impairment, wiped out, but buzzing! What a day we’d had! It’s hard advocating and fighting with #LongCovid, but it’s so vital if we are to get the support we all need /12
The following morning, we met up in reception to say farewell and head off our separate ways. The staff @premierinn were wonderful. This is Mandy, who told us how proud she was of us and hugged us, saying, ‘Keep on fighting!’ /13 ImageImage
As expected, we’ve all crashed since we got home with #PEM and we’re wiped out and struggling, but we knew this would happen, so it’s okay. Still trying to process all that happened and the amount of traction we’ve got. If you’ve read the far, thank you /ENDS

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