Pain, disability and fear…

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.

Breakthrough Pain

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?

Little bits at a time…

I was struck recently at how slow progress on First Drop was, but then realised that I’d been thrown by a number of other, smaller projects, restarting the MA (which takes me a lot of time) and playing about with Pregabalin.

On the upside, the projects have been useful and fun, ranging from writing (lots – and various), attending the local Marlborough Literary Festival (whilst the content of which was excellent, it was a show I found disability-hostile in the extreme, even being shouted at by one organiser who obviously didn’t give a monkeys about disabled people and stability on stairs), attending the monthly Hampshire Writer’s Society meetings at Winchester University (they have some really interesting guest speakers) and a Writing Group at Salisbury Library (Mondays, 10:15), and reading (also a fair bit, including attending a local reading group at Salisbury Library).

Everyday inconsideration

It’s all my fault.  Ok, this is sort of rant, or another rant, depending on how you want to look at it.  It is triggered by a series of issues I have had recently with software and screen displays, being shouted out for falling against (the safe part, even) of an expensively preserved wall and a recent discussion about what makes the impaired feel really estranged and even ‘disabled’. And annoyed.

I was having some issues with the displays of a couple of games. I use some HCI-simple computer games as part of the ‘relaxation’ and ‘enjoyment’ components of my Pain Management routine.  I only have to use one arm (no shoot-em-ups!), can use them when doped up and, if I mess up, nothing is broken.  Great stuff.  However, aspects of these ‘strategy’ games were awkward or difficult to see: characters and lines were chopped off, a display unusable.

I’m fairly computer-literate*, but could not find any – reasonable – settings that made the displays more readable.