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.

Alone Together

Alone Together – BCU School of English Anthology 2015

This years anthology has been released from BCU English School, again with contributions from students (PhD to BA) and a couple of lecturers. Once again, content is incredibly varied . Like last year, I don’t think it will be available other than through BCU School of English, though copies could be ordered direct from the university. My contribution was the previously mentioned ‘Etayne Danced for Gryngolet’, an alliterations inspired by a study of ‘Sir Gawain and the Green Knight’ during my MA.

I missed the presentation evening as a grandson was mid-way through being delivered and I was sharing the moment with my daughter and her partner. However, I was delighted to receive this year’s award for Fiction. Again, the book has been entered into a few competitions so I won’t mention the theme and title.

Another school prizegiving! I’m not quite sure what I will spend the Watertsones vouchers on this time, though. However, I am intensely enjoying the thought of browsing and having to spend vouchers in a bookshop: joy, oh joy!

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?

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.

A fantastic breakthrough…

I recently saw this report on a blood test for depression in one of my science feeds.  What many may not know is that severe depression is an often accompaniment to Chronic Pain, in all its forms, as dealing with the pain can be exhausting.

Why is this so important, then?

Simply because it pushes back against the taboo surrounding depression, it finally says: ‘depression is a real illness, not fake’. For many, depression doesn’t exist as an illness, its just someone’s attitude of mind, laziness or someone being ‘weak’. With a blood test, depression becomes a disease or infection like anything else. What’s more, the blood test reveals the probably severity of depression and gives some idea of the best way to handle it.

All of which adds up to a fantastic breakthrough. I hope it is available soon.

Progress and pregabalin

The pregabalin experiment continues: I’ve switched from 300mg 2pd (twice per day) to 200mg 3pd (which kept me in a more-or-less permanent hazy state in which I injured my foot), then to 100-100-200mg (which ended being ineffective BUT which gave me considerably more acuity). With the 200’s, I’m now wondering if I didn’t fail with my reviews last term due to being on pregabalin.

I’m now on 150mg 3pd as an experiment. I’m not sure they’re working, either, but it may be too early to tell.  I’ll keep those interested up to date.

On the kitchen bench, though, things have been going apace….