“There’s no crying in baseball!”

Frustration.  Credit to Staci Becker

Frustration. Credit to Staci Becker

I don’t tend to cry.  I mean – give me a sad film, or book and I’m sobbing like nobody’s business.  But in pain, randomly when it’s all just got too much?  Not that often.  (Although let’s take my last year of work out of the equation, because dear god I was a mess.)

But I have cried in my last three appointments, and all three times it was around the same topics.  Frustration at the “system” and exercise.

The last few months have been tough for me.  My condition seems to have gone into haywire, insomnia has struck big time, my pain levels are pretty damn ridonkulous and I’ve been pretty much stuck in the house.  It’s always tough when you have a flare up, because of the fear this is your new reality.  This is the next downward slide, on a slide that’s been pretty slippery for the last eleven years.  At the same time there has to be hope.  Sometimes I pin it on myself – I’m going to try this supplement, and do these new stretches eight times a day until every muscle in my body is strengthened and then…

And then I’m doing the most basic of basic stretches, and put my joint out, and I’m lying on the floor with half my body shaking in spasm, trying not to throw up and thinking if I can just make it back to the sofa and not move for five days, it will be okay.

So then I pin that hope on others.  That I’m going to go to the physio and they’ll give me as much Hydrotherapy as I need, and then I’ll see the pain consultant and they’ll read the research I’ve found around a specific new medication that looks really promising and will give it to me without a fight, and then…

And then I’m sitting with the physiotherapy who is giving me the lecture that they don’t have infinite resources, so I can have one more block of hydrotherapy next year, and then that’s it.  I’ll have to find somewhere else to go, and I’m trying to explain there is nowhere else, nowhere accessible, nowhere affordable, and I’m crying because I just want them to say yes, no problem, for once.

And then I’m at the pain consultant – the one that’s meant to work with people with Ehlers-Danlos Syndrome a lot, except she’s getting the most basic elements of the condition wrong.  She does read the research I push at her, and she turns and says – “Yes, we do this here.”  There’s a pause, my heart races. “But not for people with your condition.”  And then she’s lecturing me – you need to exercise, and push through the pain, it can’t be that bad.  And I’m trying to tell her, explain that I’m not talking about aching muscles the next day after a session at the gym, but agonising and consuming pain, partial dislocations – bedbound for days, and I’m crying because she doesn’t get it.

And then I’m at the osteopath, and she has her elbow in my lumbar spine, and she says, “Have you considered exercise?”  And I sigh internally, but politely try to explain the same old issues, that I do exercise – but it has to be extremely limited, and she’s pushing it and pushing it until the tears are there again and then she’s backpedalling, and sorry.

It’s so frustrating, I hate crying – and on their own are such minor things.  It’s the build up of it all, the feeling they’re just not listening.

But I need to wipe my tears, because it gets me nowhere, and push on with what I can.  I’ll get there.

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  1. A Chance to Make a Difference: Talking to Medical Professionals about Ehlers-Danlos Syndrome - The Chronic Chronicles | The Chronic Chronicles - [...] and sometimes repeatedly.  (Here are just two posts talking about previous experiences here and here.) But sometimes it’s not their fault …

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