Well I didn’t feel well enough to go out today alongside other things I need to do before the iMSK appt (go over notes, type up/print my last notes, shower). So instead we decided to stay in, get everything ready, & dye our hair 🙂
Even though I don’t feel great physically today, I definitely feel better than I have the least several days!
My joint pain is much better, overall pain has gone down a bit, seizures aren’t great but aren’t abysmal, & my heart rate is ‘good’ for me (50bpm increase). With as much of a rest day as possible today, I should be ready for iMSK tomorrow!
Also as it’s scheduled rain we won’t be taking Zeke, which means we’ll be able to go the inaccessible fast route to the train station rather than the 60min way…hey council, ya gonna sort the scaffolding & stop breaking the law anytime soon? 🙄
Blue boy 💙
Uuugh, disaster walkwheel. Not AT ALL what I needed the day before a big medical appt 🙄
Obviously both my autism & medical trauma means any appts are hugely stressful for me, but this one is especially so as:
– I’m expecting to be met with cluelessness
– there’s a lot of complex information to get across (explanations about ME, what CCI is, how they crossover, missed hEDS)
– & this is a service I have no experience with.
For an autie, this is A LOT to handle.
I was hoping this walk would be a nice distraction, but nah, it just triggered a meltdown. The final trigger is always something so ridiculous, as by then I’m way beyond threshold (“the straw that broke the camel’s back”).
This is known as “trigger stacking” in the dog training world. On this walk the final trigger was Lyle attaching my lead belt wrong when Bandit was on my lap 🙃
So fricking unlucky. There was a 20% chance of rain at 11am, we waited in all day until the entire rest of the day was below 5%, then went out. It hadn’t rained ALL DAY. Until we were out 😑
Bandit alerted to my meltdown, which was good…but what a shite walk.
Still haven’t sorted the last few of my notes for tomorrow.
Lyle laminated my DIY communication book today. We spoke about the appt as I was stressing, especially about how to answer that BS first question of “so why are you here today?” 🙄 As an autie that blows my mind; I really struggle with what to say, don’t know how to word it/explain it. Tomorrow’s particularly difficult as there really is SO MUCH STUFF.
This is my DIY communication book for when I’m nonverbal.
I have an app on my phone, but I prefer a physical form as:
- it’s easier for me to use
- doesn’t cause issues with photophobia
- is silent (my app verbalises the phrases & I often forget to silence my phone)
- & my hand tremors can’t communicate something entirely different than what I wanted 😂
I also like that I can tie in my pronouns, overall health, & how medical professionals should treat me, too!