I went to London
I went to London this week. I only had my first in-person meeting last week so er, it’s been a funny old time.
If you are out the loop, after Long Covid kept me in one place for a year (prone in bed, still on the beanbag, staring at the ceiling from the couch downstairs), I finally got a POTS diagnosis and beta blockers to help me manage my symptoms. I started to do more, and then a little bit more, searching out my new limits and learning about the illness as it applies to me. I felt weird when I said yes to an in-person meeting because I knew it would involve a lot of standing on a hot day - - but the same day, we had a call from Channel 4 about filming for a new series they have coming up. It’s in a few days though… and it’s in London… Na, I got really upset because it was something I wished I could say yes to. Imagine just saying yes to things. I used to say yes to everything because I was always good to go but now I have a weird nervous system that is working against me, not with me.
Ah. I turned to my friends to be sad about having to say no. I am in a WhatsApp chat with a few people who have Long Covid. I told them about the work because I knew they would get it. But they told me that if it was something I really wanted to do, then maybe it would be worth seeing if there was a way to make it happen. I thought the whole thing was a write-off - - I used to travel so much and I couldn’t fathom the long walks, the buses, the tube, the lonely hotels, and fending for myself with no help (knowing now I needed it). My friends wondered if I could ask Channel 4 for any help. I started to wonder too. And then all my sick friends in our sick chat offered their beds and their couches to me. One of these angels just so happens to live next to Euston… I asked Channel 4 if they would pay for taxis so I didn’t have to walk anywhere or get public transport and they said yes. Wait, maybe this could happen? Maybe if I went [ taxi -> train -> staying in a friend’s house who has Long Covid and gets it -> taxi -> filming -> taxi -> back to bed -> taxi -> open return so I could get the train when I felt able -> home ] I could do it…
And to everybody’s surprise, including mine, I did.
I’m home now. Physically: worn out but not 0%, feet feel bruised, legs are tingly. Emotionally? The world has gotten bigger. I’ve now met sick people who are sick like me and that feels immense. I’m happy to find I can do more than I thought I could and I’m feeling more confident about asking for access requirements so that I can do these bigger-world things. I’m deeply grateful to Lauren for putting me up and caring for me so well (she met me off the train with a face wipe to freshen up after wearing a mask the whole time! made me food! helped me figure all these destabilising feelings out as they fell out of me. and actually, her help made me feel like I was independent in this other place that wasn’t my home or even my city, even if I wasn’t completely - even if I can’t be - I felt close to it, and that was more than I was expecting to feel from this silly trip to do something on the telly. Like, I thought I was going to do a job I wanted to do, but what I am left feeling from this London trip is a new belief that I can do more things and go more places because my sick friends showed me how it can be done, even when it’s rough and weird. Big big stuff. Long parentheses, very necessary though).
I really cried the night before I was leaving Liverpool because I realised that everything I needed to stave off the bad crashes was here in my house - the schedule, the snacks, the temperature, the bed, the quietness, the dark. Home was an island. Why would I ever be so stupid as to leave the island? Fast forward a few days and I’m eating Jonathan Nunn-recommended char sui with two of my Long Covid pals Lauren and Edi where we don’t have to mask, and we are all taking care of each other and taking the time to care for ourselves. I was off the island but I was island-hopping, on holiday, and enjoying myself (for the first time in so long, ah).
And of course, I could write a whole separate post about how nice it was to be finally reunited with Zarina. The last time we saw each other, we were coming back from Dortmund on a lovely train journey in MARCH 2020 before shit hit the fan. Reunited April 2022. Jfc.
But because of the care and pacing (after we did the filming, I went back to Lauren’s and got into bed at 5pm. I didn’t get out of bed til 10am the next day), I was able to do so much more than I was expecting. I went shopping just for fun. I visited 2 more Internet friends and got a takeaway :) I played Apex on a mouse and keyboard for the first time. It was horrendous. I’m going to pop some pictures below of the things I got up to on my adventure.
I’m really excited that I know I can do this again. For me, I know it’s hard and scary but with the right support, it’s doable. And that was London! There’s so many places in between. The world is bigger. I am ready to see more of it.
p.s. Johnny Vegas was nice and silly so that helped too