*Before I write another word, please be totally aware that I DON'T advocate this for everyone*
I tried to go back last night and find a starting point for the awfulness, but horizon-like, it always shifted every time I got close to it.
I had two major operations. One went wrong and led to a battle so dreadful, I thought scriptwriters must be writing my script, Truman Show like. I faced the full force of a hospital scorned.
I had to fight the rejection of my DLA application, right to the brink of tribunal.
I was evicted and had to move.
I had to find an entire new medical team, from scratch on my own, before I croaked.
I fought an entire government who played DIRTY, with reckless and passionate conviction.
I was desperately sick all the time, there were no post-op reprieves or mystery mini-remissions.
My Dad died, who I adored. There were funerals to arrange and long estranged siblings to find a compassionate voice for.
But the very worst thing of all, the thing that made it impossible for me to live, to love, to fight, was medicine.
Over a very long period of time, a chronic illness teaches you sooooo many lessons. You absolutely don't want to learn any of them by the way, so hold the "brave" or "remarkable" loveliness. You aren't given a choice in the daily dose of pain prescribed - medical or social.
At some point, you learn that each and every drug you are given are just flimsy shields against impotence.
Imagine any drug on a set of old fashioned sweet shop scales. On the other side, balancing perfectly, are the side effects that drug will give you. The stronger it is, the heavier the weight must be on the other side.
My crohn's meds increase in strength (and so side effects) from almost-as-healthy-as-cammomile-tea to at-least-it-won't-kill-you-sooner-than-the-crohn's (probably) So do all painkillers, anti-emetics, dietary interventions and treatments.
I'm sort of beyond any of those helping me, so until recently, accepted a world of side effects in exchange for.... well, none of them helped so actually, in exchange for nothing.
One has such a high risk of causing leukaemia, you had to have weekly blood tests. One triggers TB. One is (in drug licencing terms) scarily likely to give you brain tumours. One of the feeds has a 1% per year chance of killing you - cumulatively. Surgery has a 20% risk of killing you (I've had 9, you do the maths.)
But pain meds!!! They're EVIL.
We have to take drugs regularly that are addictive and mind altering, but never become addicted and somehow, remain unaltered.
We must manage like tightrope walkers, focussed and brave.
We must not allow addiction to things that are addictive. We must only succumb when the pain is at home dental extraction levels. Which means "first stages of labour" and "rugby dislocation" levels must be born knowing there is something in the house that could make it better. But that's not what they're for.
Think about this for a minute. We only have 1) Man made heroin 2) Man made cocaine 3) Uppers 4) Downers 5) Weed 6) Booze available to get any relief from grinding, desperate, unremitting, intolerble pain. Once you're done with paracetamol and Nurofen, that's it, you're done with Mr Nice (**oblique vox-pop reference)
From there up you have 1) Addictive 2) Addictive and damaging 3) Addictive, damaging, and eternal space cadet. 4) Might get you arrested
I was at the "Might not kill you before crohn's does. eternal space cadet" end of the spectrum.
There are lines, boundaries, constant rules. You live by them, every last neuron is consumed with obsessing over them. There's no space for play dates or seeing friends.
Minute by minute, day after day after day the only question is "Is this enough pain?"
Only when tears trickle involuntarily down my cheeks is it usually "enough".
So then, there's the last stage. The place I found myself lately.
"Give up, take the big pill sitting there now, weighing everything else in your life down."
But for less pain I was suddenly faced with "Exchange your children and your husband and your writing and your friends and your fitness and your dazzle and shine"
And the scales tipped so hard on the side of life, I had to choose that.
So far though, I haven't learnt how you live with the pain, in sharp focus, every day, and always have the strength to face it down.
When I have, I'll let you know.