I like the rain, the sounds, the scents, the sensations, I like all of it. My joints, now they're not so keen on the rain but you can't have everything. Although, living in the rainy North West it'd be nice if they could at least come to terms with it as a concept. Back home with hot chocolate to reward myself, though I know my joints are acutely painful, I can't actually feel the pain properly as I'm in such sensory overload from deathwalking in the rain.
It was amazing out there, me and Joan wobbling our way across the sand, rain coming down too hard to see, soaking me through to the skin. It was so grey I couldn't tell where sea stopped and sky began or care that anyone might see me stumbling along, arms outstretched for balance, eyes closed just feeling the rain on my skin.
Yesterday a twitter friend emailed to ask what I thought about pain management courses and specifically cognitive behavioural therapy (CBT). Late last night pain kept me sleepless and clock watching, to rise with scratchy eyes and leaden limbs aching with the rain that's been and is yet to come. Today on the beach, fat raindrops running down the back of my neck and trickling down across my collarbones, all I could feel was the kind of high drugs can help acheive but never truly create.
The knowledge that physical pain will be your constant companion throughout life, more initimately connected to your sense of being than any lover could ever be, well, that's a difficult thing to come to terms with for anyone, but especially so for teenagers and younger adults. Seeing decades stretch ahead of you, knowing full well there will never be any significant improvements in your health, can understandably seem too much for anyone to bear. I remember my inability to shake the unwelcome thoughts that if that was really how it was going to be then being dead might be the most desirable outcome.
In the end, for me it wasn't a pain managment course, medication, surgery or any alternative therapy that ridded me of those unwelcome thoughts forever, but a moment of understanding. Watching a documentary about how pain is dealt with in societies without access to western medicine, a man with a sword pushed through his tongue as part of a ceremonial ritual was asked how it didn't hurt him. The man looked somewhat bewildered by the question as he explained that of course he could feel the pain, that of course it hurt him, but that he chose not to be bothered by it, that by consciously believing the pain was of no consequence whilst it wouldn't leave him be, he would be able to leave it be and get on with more important things.
I figured I had nothing to lose, so I gave it a try. Concentrated fiercely on just one thought. "I know it's there, but it doesn't bother me." Over and over. And, much to my amazement, it worked. Only for a split second, but that second was long enough for me to realise I could in fact feel the pain coming from all the usual places in my body, but that it wasn't bothering me, it just was what it was.
What sounds such a simple thing to do took weeks and months to perfect to the point it became second nature. Now I'm so used to it that as soon as I lose the background concentration I feel myself start to become distressed by how much pain I'm in, but instead of falling into that cycle of pain and stress I stop myself and focus on not being bothered by the pain for as long as it takes to really be not bothered. It's CBT in a simplistic but incredibly effective way that given enough time and patience anyone can learn to do.
My experience of pain management courses was a frustrating one. I felt patronised and demeaned by medical professionals who had no experience of actually living with pain, but who were determined to tell me how best I should. The whole thing just wound me up to such an extent I ended up in more pain than before I'd started. CBT wasn't in fashion when I spent time on a pain management course but had it been I'm sure I would have dug my heels in even more stubbornly by being 'told' what to do by a pain free therapist! For some people the current model of doctors, nurses, physiotherapists and other allied health professionals delivering pain management courses will work well, but many find it as frustratingly inadequate as I did.
Now I'm some years on from being diagnosed with Ehlers Danlos Syndrome and away from the constant distress of being disbelieved, knowledge and understanding of my condition, and how it affects my body are just as much help as my ability to change the way I perceive the pain it causes. The difficulty for many chronic pain patients is that they may never receive a formal diagnosis and it is significantly harder to know and understand a condition no-one can even name for you. Pain management courses and/or CBT will never be a cure for your pain, but if you have reached a place where you are ready to accept things as they are, the skills and information taught there can be invaluable tools for the future.
Ultimately though, the only thing which can truly alter your experience of chronic pain is yourself and whether you're ready to do so. For some people that point will be reached sooner than others, it's not a situation you can artificially impose a timescale upon, but once it is reached it doesn't really matter where you learn CBT type skills from, you can learn them in whatever way suits you best.