I wasn’t expecting that.

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.

sexygloves

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.

Relief.

Ren x

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5 thoughts on “I wasn’t expecting that.

  1. bowermanland says:

    I hope they gave you two pairs of those gloves ‘cos they are gonna smell. Well done on that team! Shoulders: you don’t think of them as Hypermobile until you realise that waking up with one in your ear or drowning in your own arm because it’s so loose it’s covered your face – is not normal. x

    Liked by 1 person

  2. brendaflippen says:

    I am so glad you have good docs and therapist!! It makes so much difference. I had good docs once upon a time,,,😕but then I moved to a other state and wow did thi b.s. change. Out of the 11 different gps I have seen since I moved, and yes that is a lot !! But, 3 have moved, 2 totally retired, 3 wrote me letters saying they felt I had too many problems and that they weren’t qualified to treat me.haha what a cop-out. And one died. One doctor I was refered to was retiering and the day I saw him was his last day of practice!! One of them said they thought I was on ” smack”, her words, because I had some body powder on that had a little shine to it, and she said that was a sign of drug use. Brand new info to me. I think I have heard it all.
    I hope you are on the road to a better less painful life😄😄and don’t have to change docs ever again ! Much good vibes, prayers, thoughts or which ever you prefer. Btw, I enjoy your blog, I’m trying to write one, but just can’t seem to get it done. Hahaha !! One down and hopefully more to go….

    Liked by 1 person

    1. brokendownbody says:

      No, you’re quite right – all the GPs suck! All the people who have been good to me are rheumatology based. I really had to fight for the referral but it’s the best thing i’ve done. I’ve been told i’m anxious a million times and yesterday the physio was so sympathetic that I’d had to face so much.

      When I decide to write a blog i try and decide what its about before hand and trrry to sick to it. Is it a general update or an observation of useless GPs? Also, remember tags so people see your blog in the reader 😊 an “about me” is good so people can see what you’re all about when they click on your blog.

      R x

      Like

  3. Ms. Mango says:

    Awesome! So glad you got a few members of your team really working on your side. Being even worse off shortly after physio is normal and usually means it’s gonna do some good in the long run. Hope the gloves help and that continuing on with the therapy gives you much relief in the long run!

    Like

  4. m88 says:

    Hello there! This article couldn’t be written much better!
    Reading through this post reminds me of my previous roommate!
    He constantly kept preaching about this. I will send this post to him.
    Pretty sure he will have a great read. Thanks for sharing!

    Like

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