Posted on | August 7, 2013 | 2 Comments
Judging by the fellow tweeters with disabilities I interact with (yes, a few do talk to me!) I get off fairly lightly as far as pain goes, yeah I get the odd graze from a fall but that’s about it. I’m lucky for this in many ways but the trouble it causes is that when pain does come a’knocking it leaves one few places to go. A couple of weeks ago I did something to my back while working out that caused minor discomfort for a few days, then an ever-so-slightly careless descent from standing to sitting one evening turned that minor pain into something more major. (Don’t worry enough time has passed for me to feel better enough for this blog not to be a plea for sympathy, but feel free to give some if you desire.)
After a sleepless night I hotered (a combination of hobbling and scootering) off to the quack who gave me a handful of painkillers and told me to continue exercising but just taking a bit more care – exactly the same as I got after injuring my leg a few months ago. (Those knowledgeable of athetoid cerebral palsy will realise how making one’s movements more subtle is easier said than done.) Basically he didn’t really have a clue.
I could recite numerous instances like this but one that springs to mind is when I saw a ‘hypertonia expert’ about the possibility of getting Botox injections for my left much-more-spasmy hand. This was something I talked through with my surprisingly-thorough GP (who unfortunately wasn’t available in the two episodes described previously) and he understood my curiosity perfectly. I use the word ‘curiosity’ as that is exactly what it is, I have lived 25 years with a spasmy left-hand and would happily do another 25, but was up for seeing if Botox would make anything easier. He understood this perfectly and instantly got me an appointment with said ‘hypertonia expert’.
Upon seeing this ‘expert’ there was a problem with the information flow, she did not understand that my desire to try Botox was more of a ‘curiosity’, nor did she understand that nothing had particularly ‘got worse’ nor did she understand the basic properties of athetoid cerebral palsy! I spent a good 25 minutes painstakingly what I had effortlessly, and almost enjoyably, conveyed to my GP in five minutes – and even after that she had to confer with her colleague. The eventual outcome of this meeting of tedium squared was that Botox wasn’t appropriate (I can’t say why as they failed to clearly convey that information to me – something about slightly numbing the whole area not being wise) but pregabalin would be.
Yes, they thought something mainly used for depression and phantom nerve pain (thanks Google) that has a slight but global calming effect would be more appropriate than something I can shoot into the bugger when it gets particularly hard to control. I did take it for a week to find little change in my left hand but a general dreariness I did not like, so I went back to my GP [the good one] and told him I don’t want these stupid anti-depressants (or words to that effect) and thankfully he got me off them.
It just struck me how alone one can feel with a disability when things go wrong. Spending most of my teen years living in a specialist education establishment I had highly specialised help on hand 24/7 – the education and the social life may have left a bit to be desired but that was awesome. If something was wrong someone would know what was wrong and how to fix it. But unfortunately the big wide world isn’t like that.
(Still, the freedoms of not being in such an establishment definitely outweigh suffering a bit more pain!)