Comments and news stories on disabled bullying are frequent in the press – just search and see (here’s one from yesterday). From 2003 it has even been a hate crime, the CPS guidance acknowledging how such bullying can be disregarded. This, though, is just the tip of an iceberg that ranges from the extreme, horrifying accounts in Katharine Quarmby‘s Scapegoat to a constant, everyday grind of low-level contempt.
The problem is that whilst, like many in a similar position, I do not like to be termed ‘vulnerable’, the fact is I am. I constantly have to adapt to my pain; I have to be continually very conscious of when my arm could uncontrollably jerk, knock or spill something or tap someone. I often have to have it in a sling to take the pressure off my neck and shoulder – which is awkward in itself. Because I am in pain and because I am concerned about the lack of limb control (never mind about coping with the occasional bout of depression) any non-friendly social encounter becomes something to fear.
Yep, fear. Any inch of threatening behaviour gets me twitchy, wanting to run. Loom over me, and you make me scared; you walk into my house without being asked and I am terrified; step into my personal space and you might as well have hit me given the surge of pain that I experience from tensing up with concern.
I missed the Creative Non-Fiction seminar yesterday due to breakthrough pain. This is pain that somehow gets through all the training, all the routines, all the distraction and all the painkillers. For anyone suffering Chronic Pain it is a frustrating phenomenon that has to be accepted and dealt with to make sure it is kept to the minimum. If the breakthrough pain is not brought under control you find yourself falling back into permanent, uncontrolled pain.
That control is not easy to reassert.
In my case it means swallowing my pride, reaching for the more powerful opioids and making sure that all the relaxation, meditation and transference exercises are brought to the fore. Whilst some rest is really useful to let the worst of the pain die down and the analgesics take effect, over the course of the day resting becomes both exhausting and ineffective: exhausting because I have to focus on the exercises all the time; ineffective because that focus is impossible to keep up for very long.
So what to do?
Curious things, banks. I’ve had a tremendous amount of trouble setting up a Business bank account. So much so that I finally sent a letter saying something along the lines of ‘I give up – it’s now taken over three months and you’ve not bothered to get in touch, process my application or treat me seriously’. I’ve thought of running through the FSA, already, and raising the issue publically to highlight the problems peeps like myself can face.
So, here is a tale of frustration in setting up an account. Sure, it may be ranting in nature, but the details are correct…
For a while I’ve been quiet about pain management. One reason is simple: I’ve been largely out of pain! The state of ‘out being in pain’ is addictive, though, such a relief that it dominates the senses by its absence. It’s a beautiful sensation.
It’s worth saying that again: being pain-free is addictive.
But there is a another, more sinister reason for not mentioning pain management: I haven’t been able to. All my focus has had to have been on what I’m doing, what I’m developing because, despite the lack of pain, I’m as incapacitaed as before. I have had to carefully choose what I am doing and when I do it. The focus on the current book and the occasional short story has had to be paramount which has meant a great deal of peripheral writing has had to be put on the shelf.
Why? It’s the side effects of the medication. I’ve been taking Pregabalin, a progression of gabapentin that, theoretically, has less side effects. The intent of the drug is to suppress some nerve impulses to manage peripheral chronic pain (like mine – neurogenic pain rather than ideopathic chronic pain). To be fair, pregabalin has had less side effects than gabapentin. The latter reduced me to what can literally be called a dribbling idiot, a walking zombie who could barely talk, who caromed from wall to wall and door frame to door frame, never made sense and who never know where it was.
It’s no fun being such a zombie.
Pain – or Life – Management is an ongoing effort, a framework that often results in a daily management plan. It may seem a burden, but you get used to it. You know what you want to achieve so you work out what you may be able to do in a particular day or number days, work in rests, distractions, possible medication, relaxations and end up with a plan. Being a writer helps as the physical work can be wrapped around the vital task of reading.
But then the plan hits reality and has to be adjusted. That’s fine: the phrase ‘no plan ever survives contact with the enemy’ comes to mind. You adjust it, add in more medication, perhaps, more breaks, even a deliberate, full lie-down/meditation. That tends to work, and you adjust the plan.
But then life really kicks in and stomps all over the new plan, all over the intentions. Life Management becomes a real struggle.
Struggling to be me
OK, two posts running on pain. However, I have to share this as it’s an absolutely fantastic film showing what it’s like to be in constant pain with nothing to show for it. I picked it up from the Pain Concern email list.
It hasn’t got everything that’s me, but then everyone is different, but the film has been researched really well and the script is excellent. It’s missing a few things about impact on friends and family and, of course, it misses the potential danger of specific conditions. However, it opens a glimpse into the day-to-day struggle.
Watch it. Please do.