Every inch of me hurts and I’m delighted about it. Today I saw two amazing ladies who are absolutely in the right job. One of them was a sort of occupational therapist who deals with joint/rheumy issues. Her son is hypermobile, she is a bit hypermobile. She 100% got it, all of it. Not just the joint/muscle pain but the IBS, fatigue, acid reflux, depression, palpitations… EVERYTHING. On the same spectrum of amazing understanding was the physiotherapist who seems like a force to be reckoned with – in a good way. Apparently my ankles, hips, shoulders and hands are “ridiculously hypermobile” to the point I almost dislocate my shoulder doing simple things – oddly my shoulders don’t bother me as much as my lower extremities. My ankles seem to be my biggest “circus freak” trait which makes me feel so much better about the times I’ve fallen and eaten dirt. I’m not clumsy, well… I am, but poor proprioception is common in JHS/EDS-H people.
Tomorrow, the physio lady is going to speak to a psychologist who specialises in chronic pain and fatigue. Hopefully I can develop some sort of coping mechanism that will make physio more manageable without any other pain relief seeing as I’m allergic to all the good stuff. She is really positive that I’ll be a functioning human again but warned me that it won’t happen overnight and will have highs and lows – at which point I explained that any highs will be an improvement on my year of disappointment! I’ve got some super sexy compression gloves to try and ease my hand pain and make me generally more aware of the stupid shit I do to my hands without thinking and I have “therapy putty” to do exercises (play) with. I also got a leaflet all about shagging with arthritis which is highly amusing. I told the therapist that this booklet would have saved me endless incriminating google searches, she absolutely lost it laughing! The best part about today was how without me even explaining, the physio told me that she absolutely understands my worries about physio. It’s reasonable to want to avoid something that hurt you in the past. Weight officially lifted.
I am sore and exhausted but FINALLY I have a shit hot team of medical professionals that recognise my daily hell and THEY ACTUALLY WANT TO FREAKIN’ HELP ME!! The more I see good doctors, the more I get furious with the bad ones. My complaint to the NHS will be glorious and comprehensively detail all of the utter twattery I have had to endure over the past year.