I had a call the other day to say that I was accidentally referred to the wrong clinic. I have now been triaged by the correct clinic & they want to see me. But it won't be until around June '27 due to it being a national service with a long waiting list. I am gutted.

I'm on top of my injectable meds, but struggle to take my 6+ daily oral meds reliably. I've ordered little glass pots with lids to label, decant each medication into, and leave on the kitchen counter. Perhaps in sight = in mind? We'll see!

If you're ever wondering about the specificity of some NHS booking systems, I have been given a 3:44pm appointment to get my COVID booster & flu jab.

Content note: suicidality No, I don't want to download the free self-management app "getUBetter" in a futile attempt to self-manage debilitating pain that self-management didn't touch & that landed me under the crisis team for weeks earlier this year because it made me suicidal.

Stop reading the Daily Mail warns top expert on neurodiversity.

I recently started a trinket trade box that is housed in the most gorgeous little shop in Brighton. I'm absolutely loving watching/hearing about people doing trades & getting joy from it. instagram.com/brighton.trink… If you're local, do pop by & give it a visit.

Yesterday I turned 29. It feels weird (in the best way possible) to go into my 29th year feeling stable & happy, despite lots of negative stuff happening in my life lately that is beyond my control. I'm determined to hold onto that sense of stability & happiness.

I've lived in 11 different properties in the last 10 years: some nice, some truly horrible. I feel so lucky that my newest rental is the one where I feel very relaxed, at home, & like it's a little sanctuary for me/my dog/my cat. I'm loving furnishing it dopamine décor style!

Content note: death My grandma died last week. Hours after her death, her GP surgery texted her asking her to rate their service, triggered by deregistering her after she died. Automated patient communication is brilliant - until it isn’t & it misses the mark this badly.

For 1.5 years, I’ve had investigations for rib pain. Whenever I asked, “I have hEDS – could it be slipping rib syndrome?” I was told, “that doesn’t happen.” In December, I’m seeing an NHS “slipping rib syndrome specialist” thoracic surgeon. Relief is an understatement.

As if I received an NHS appointment letter today where my home address is *over twenty years* out-of-date?!

🧵on my experiences of doing mental health lived experience work whilst also being a commissioner.