• In my diary for Monday I wrote: "OK day!"
• I saw a couple of people briefly mid-week. I bought more books.
• Thursday I cried a lot, walked along the Thames and got stranded while the Overground broke.
• I finally got in touch with my GP who sent in a prescription for more steroids -- I'd had to decide myself to decrease so that I would make it through the week before seeing the doctors at the hospital again on the Friday. It's not great to have to decide yourself how to stretch out your steroids and not be able to get in touch with any of your doctors. Not great!
• Friday, the six weeks delayed due to strikes and initially rescheduled in December which was impossible so I had to push for a new date appointment at the hospital happened. I got a casual "Yes, it has been a crazy time," response to leaving me without enough steroids to live on and no one checking in on me and no one telling me what to expect while on steroids for so long.
• I got a six-week weaning off steroids plan and another month of leave from work.
• It's September now and really feels like the whole year is lost to illness. At some point in October when I'm done with steroids I'll be able to get the covid jab and if it doesn't send me to hospital then there's hope I'll start having a normal life again.
• I'm not holding my breath.

Published on — Thu Sep 07 2023