(Copied from instagram, posted 5.7.19)
Well the appt went probably as well as we could have hoped for? Which I’m especially glad for as if we’d needed to complain, our recording sucked because Lyle left the phone in his pocket 😂
Dr actually listened to everything, read our CCI info, I demonstrated some hypermobility. She’s sending a referral to neurology today, & is gonna send a referral to a neurosurgeon once she’s researched CCI & spoken w/ Dr Dick.
I mentioned how scared I was as I didn’t know how to prevent CCI getting worse whilst we wait for the referral (it’s looking like it would be over a year’s wait), & she literally just said “look I’m gonna be honest, I’m not sure” 😭 Expected but 😭
She wants routine bloods (every fucking time😂), & in a week’s time we have to fill in referral forms for neurology, which is when we should know more about wait times.
Went better than expected. There was no bullying, no blaming MH, no aggression. We’ve got referrals, although they will take a terrifyingly long time.
She was also baffled why neurology had dropped me, as was the duty GP who called earlier…like why wasn’t this picked up on?! Why has it taken until now for them to realise/tell me this?! 🙄
She mentioned epilepsy meds briefly (wanting my to go on them for seizures), but I explained it’s much more likely my seizures are related to ME, CCI & POTS. That’s when she talked about the referral to the neurosurgeon. Asked if we could afford private, obviously we said nope. So yeah!
Turns out the surgery had only scanned 4/26 pages of our notes onto the system (they’d told us several times they’d done them all 😑). The only notes on the system was a 1 page summary of CCI/explanation of the measurements, & 3 images of my MRI 🙄 No info on ME/symptoms/diagnosis, no info on my POTS or seizures. We took in 2 copies of those notes, fuck knows where they are. We have to phone reception & if they can’t find them, take them in AGAIN 🙄
Lyle said this was the first appt I’d ever dealt with all the questions on my own, & seemed so ‘okay’. That’s what you get knowing you’re #actuallyautistic 😃 & going in not giving a shit.
(Copied from instagram, 7.7.19)
Oh good, I’m immensely unwell 🙄
Two horrifying options for what’s going on here – either I’m normal people sick on top of my usual sick (always a spoonie favourite 🙄), or I’ve triggered a really bad ME relapse. Yikes.
The big trigger for either of these would definitely have been all the NHS bullshit this past week 😭
I feel incredibly rotten, have a really sore throat, & a sneezey runny nose. This has happened maybe 3/4 times over the past 18 months, after visits from family/friends, where it was clearly an ME relapse. So we’ll just have to wait & see… 😥
I’m hella sick. Throat feels like I’m swallowing shards of glass, I’m having a ton of #seizures, & experiencing the most intense exhaustion. Felt a bit better earlier so went with Bandit & Lyle to the nearby field…my thinking was: I’m in a wheelchair, this can’t be too much! It almost killed me 😂 I felt TERRIBLE. Bandit insisted on cuddling me lots, kissing my mouth & nose, and alerting to my breathing. Came home & slept for hours. Ready to be done with this thanks, whatever this is 🙃
Emailing specialists abroad 🏥
Lyle phoned up the GP surgery today to book my blood test (2 weeks wait 🙄).
He was treated like shit, then the receptionist hung up before he’d had chance to ask if my MRI forms had come through, or what had happened to the notes we took in that weren’t scanned onto the system (the GP asked us to get them on). Ugh 🙄
We might try to switch GP surgeries, but idk. Last time we were refused, & I have a GP here who (although had no knowledge) actually listened. Reasons for trying to switch would be: wait for GP appts (3-4 weeks, other surgeries are 1-3 days); staff have been atrocious (lying about symptoms, missing appts, refusing treatment), & the receptionists are useless. .
I’m mega unwell 🙄 I’m having so many seizures every day, my pain and fatigue are high, & in addition I can’t breathe well. My heart feels like it’s skipping out and my vision is made up of seizure auras, floating shapes/pinpricks of light. I don’t know if I need urgent help, or if I’m okay 🤔
Lyle’s being a star whilst I’m scared…I keep thinking I’ve fucked up somewhere & my spine is getting worse fast 😥 I haven’t done my PT exercises for a few days because we’re scared they’re not what I should be doing/could be making me worse…but without PT my neck can’t get stronger.
The PT is the missing link. We know from lectures that the US specialist has a 3 pronged attack to treat CCI & delay/avoid surgery – neck brace throughout the day, PT to strengthen, avoid further trauma. We just don’t know what the PT exercises are.