Ignorance is bliss they say – not when you’re a product of it…

This pain is immeasurable – indescribable and inconceivable for others to ever understand. I’ve deteriorate so much already this year and I’ve nowhere else to explore – having recently been denied a trial of the Spinal Chord Stimulator because, “with your current level of disability and distress, in my opinion spinal chord stimulation is going to do more harm than good,” I’ve come to a dead end. He said I need to motivate myself more – me, motivate myself, ha ha that’s funny that is – he wouldn’t be saying that if he knew the person I used to be…

I’m not sure I’ll ever be able to accept this life; not because of the pain or disability, the isolation or loss of my able-bodied life, but the fact I have absolutely no understanding of why…? What even is CRPS…? Why doesn’t it get taken more seriously…? Is it just a category everyone with unexplained pain fits under…? Why isn’t there enough help out there…? I’m confused. Having had 2 separate CRPS diagnoses to then recently have a psychologist say they’re weak and she believed what I have is a mental disorder (Somatic Symptom Disorder) I mean, what the fuck is going on here…? That’s like saying I went in for an operation and magically woke up mentally ill – or that I’m hallucinating the discolouration of my operated leg and clawing of my foot – visible symptoms.
It seems a cop-out to palm chronic pain patients off as having a mental disorder to explain their pain – damn right I’m mentally ill – my head is completely screwed up I know that, but that’s not why I’m feeling all this pain – It’s because of everything resulting from the pain – pain pain pain pain pain. My social worker said not too long ago about some people being able to cope with chronic pain better than others – was that her way of saying I’m a wimp…? Is that really how people see me…?

I worked up to 80 hours a week before my hip operation – in constant pain and it had no effect on my life or mood whatsoever apart from a little frustration every now and again – even for the first couple years after the surgery had made me worse I managed an intense Access to Nursing course at college and worked part time. But this pain is something else on another level entirely – it was like some external force took over my body and the burning that only affected my hip post-op spread through my lower body with each passing step – the difference in pain over the space of a couple of days was massive and my body has never looked back. Over the last few years I’ve gone from walking with a limp to needing an electric wheelchair recliner to get about – and that’s never for pleasure given how much pain I have in my butt cheeks when sitting. There’s not a second that goes by where I’m not in huge amounts of pain – my legs are either on fire or ice cold where my bones feel like they’re being crushed – what is it with that and this sweating is getting out of control…?

I don’t use the word cripple lightly but this pain in my legs has well and truly crippled me – my life is now pretty much spent lying down and I haven’t got here through psychosomatic pain. It just does not fit with how this pain has unfolded…

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