Living with chronic pain

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I listened to ‘The Secret of my Death’ and felt myself nodding along when Dave said...

It’s a long story, Dave’s, and so to cut it palatable-short: Dave has type-1 diabetes, and went into a month-long coma a couple of years back after his blood sugar skyrocketed (because, to quote, ‘he hadn’t been taking care of himself’). Through miscommunication, friends of Dave’s were of the understanding that Dave had passed away, and so they took to Facebook to share their thoughts about him, with a wake held where some-50 people gathered to talk about his (positive) effect on their lives.

Dave, however, hadn’t passed (yup, imagine that - someone made the joke that Dave turned Thanksgiving into Easter, thanks to his back-from appearance), and when he was once again able to use his phone, he spent time reading through the messages that people had left for him, ultimately feeling a great discomfort...

He saw himself as the bad guy, the one who’d not paid attention to his body, the one who’d eaten poorly, and drank too much, and sold his test strips for weed money. He felt guilty that he’d made his family suffer, and years later still finds those feelings to be an of-his-own-doing burden.

This is how I feel about talking about living with chronic pain.

Granted, (much like Dave) I didn’t ask to be subjected to the wrath of Joint Hypermobility Syndrome, but (much like Dave) I don’t feel as though I deserve the good will I’m sent when I talk about it because (much like Dave), I feel as though the way I’m living (or, some days, un-living) is down to my own, not-caring-for-myself doing.

It started with a click. A something I called my party trick (aged roughly 13+) where I ‘popped out’ my hip to (un)willing observers that had no idea (and who can blame them?) how to react to it. I didn’t know it at the time, but the ballet I was doing at this point in my life (aged roughly 10-16) was what was keeping my joints strong, and - so goes my own assumption - had stopped any discomfort or abnormality ‘occurring’ in other joints. Fast forward a couple of years, and I was struggling with my neck and shoulders, observed by a physio who mentioned ‘hypermobility’ in passing remarks that, to my ‘untrained’ ears, sounded throwaway in their severity (“little did she know”, muttered the voiceover artist, menace creeping into throat, “what was to come”).

2012 seems, when I look back in one of those swift, glance-over-the-scenes-of-my-life moves, to have been the start of a new, rather turn-for-the-worst chapter (one that has yet to have had all its pages turned). After a poor start to university life (which is a long and...boring story I won’t subject you to here), (sidenote: I attended UoN as an I-should-have-known-myself-better 26 year old) and a head that never seemed to catch-up with everything that needed learning and doing, I found myself in the midst of a 3-year-long flare up, during which time - after finding myself a Doc who, thankfully (which is a strange, but hopefully you’ll forgive me for that, way to put it), had a daughter living with JHS, I got myself a long-awaited for diagnoses with a mission - should I choose to accept it (I didn’t) - to get myself on the straight and narrow through dietary adjustments, and strengthening exercises (suggested to me by a private physio my bf paid for because a) I never had any money...no change there…, and b) the NHS physio I saw, much as I appreciated her input, did little to positively affect my case).

And this is where we loop back to Dave.

It is horrible living with chronic pain, and equally so to be living with a) an invisible illness, and b) an illness that affects my mental health. During university, I struggled through incredibly awful winters where the stress over exams was so impacting, and my all-over-pain so all-encompassing (not helped, at all, by a long-lasting Vitamin D deficiency I’m still not on top of), that I spent months at a time battling with the lowest of moods I’d ever experienced (a possible soft-brush with depression that I left untreated, much to my repeat-several-times detriment). Because, one feeds the other, feeds the other...and so on and so knock-it-out-of-me forth.

And yet, talking about it, telling people has always made me uncomfortable to the point where I’ve learnt to keep it to bare, that’s-enough bones, downplaying its impact partly out of fear of the ol’ nudge-nudge, wink-wink reaction (because, telling people you’ve joints that are ‘too flexible’ always tends to lend itself to such a response), and partly out of discomfort over the fact that I don’t believe - or, haven’t believed - I deserve anything other than a nudge nudge, wink wink because I am undeserving of empathy or understanding.

Mostly it’s an un-treatable illness (because, as much as strong drugs can dull the pain...strong drugs do not mend my physical weaknesses), but there are (those aforementioned) things that can be done in aid of ease...things I have (at least up until now) been unwilling to make the effort for - dietary adjustments and exercise that my sweet-toothed laziness baulks at...laziness that not only stops me from getting off my arse regularly, but also stops me from putting any energy into making meal-time modifications because a) I very much dislike preparing food to be cooked/eaten, and b) I dislike meal choosing and making, full bloody stop!

And so, because I...ahem, basically...can’t be arsed to do such things, then I don’t spend time talking about my chronic pain - I know I should be doing more to help myself, and therefore I haven’t allowed myself airtime out of worry I’ll attract kindness, and empathy...the sort that, although I will give thanks for it, ultimately will make me feel bones-deep, who-do-you-think-you-are dirty. A bad-guy-Dave kind.


Has anyone else ever felt like this?

Does anyone else stop themselves from talking about something - ill-health, mental or physical - because they don’t believe they deserve support?

I’d love to hear what you think, my friends.


Notes:


This American Life, episode 646: The Secret of my Death, Act 2 - Commento Mori