To get to a 10 am appointment (at the Heath Hospital) I leave home at 830 am allowing time to park, negotiate the ticket machine and 15 minute hike to the Stimulator clinic. This process is punctuated by me spraying the tarmac with change as I attempt to buy a ticket! A lovely elderly gentleman picks up the random coins for me and in return I show him how to get a ticket – one is required to punch in the number from your licence plate. Free parking has yet to arrive at the University Hospital – it is the height of tightness (in my opinion) to print the number on the ticket simply so any unused time cannot be passed on to another punter!
When I arrive at the Clinic the waiting room is full and in complete silence on account of a sleep trial being conducted. Of course the menacing hollow clip clop of two crutches accompanied by block heeled boots cannot be silenced so I hope the subjects weren’t light sleepers! Wickedly the idea that I might give the subjects bizarre nightmare amuses me especially in light of the recent night time activities I have been up to. I eventually get called at 1040 just as I’m about to say I can’t wait any longer. Wisely the woman in charge of the Clinic says ‘sorry to keep you waiting’ (as I am leaving I hear her say to the next patient ‘sorry to have kept you waiting so long’; presumably the next patient will have been kept waiting ‘even longer’!)
The woman I am seeing is employed by Bionics and works alongside the installing Surgeon. On this occasion another younger woman is being trained and she is in charge of the laptop. Funnily neither of us actually discusses why I am there and before I know it I have relinquished control in preparation for reprogramming! What is it about being in a hospital that renders usually assertive people mute? Having ascertained that the stimulator has been charged my remote control is attached to the laptop and is switched on. The more experienced practitioner talks the trainee through the programmes already installed and asks which one I use most. ‘The one called walking, you installed last time when I said I couldn’t walk and have the stimulator on’ I reply to which she says ‘they’re both called walking!’ Funnily enough I’ve never noticed this!
The equipment is tested by making the stimulator active at various different intensities to ascertain the coverage; the implanted device is attached to my spine with electrodes placed to focus on my left leg primarily. At high intensity I can feel the tingling on the inside of my right leg as well; and just to see how far it will go the trainee whacks it to full pelt making me squeak! The experience is something akin to being surprised from behind by an errant canine, the ones that like putting their snout between ones legs. I explain that one of the reasons I haven’t used it much recently (around 2 years) is it makes the pain worse rather defeating the object. Apparently it’s all about tricking the brain or perhaps temporarily distracting it as mine doesn’t seem to be up for being conned these days. Any sentient being would get wise to such behaviour especially when displayed, to varying degrees, across hospital departments and disciplines – the Expert Patient Programme is designed to put the patient in charge of their medication except those (moi included) who use controlled drugs.
After 10 minutes or so we have four new programmes including ‘cycling’ a term new to me. Cycling means the pulses are on for 5 minutes and off for 5 minutes in turn. I just get a sense that this is not going to work for me and in fact could be my own personal torture regime; self harming on an innovative scale. In terms of aggravating the pain what happens is when I turn it off it’s like the volume being suddenly turned up! So I predict a gradual escalating until I could audition for a soprano role with Welsh National Opera!
When I explain the impact on my balance and mobility the programmers suggest I stand up to test the new regime. The older woman comes and stands next to me whilst the younger one turns the stimulator on. What do you think happens? Yes I list violently to the left; and we all laugh! Another occasion when being well brought up doesn’t do me any favours – she could have warned me she was going to turn it one quite so intensively (and suddenly without allowing me time to actually stand up and get my balance).
After the appointment the first thing I reach for is a Fentanyl lozenge as the pain is HORRENDOUS! This is 11am and it takes until 3pm to calm down (ish). What hadn’t happened before is not being able to make my legs work; my mobility is pretty poor these days but this is something new. Getting back to the car takes twice the time it got to do the journey in reverse; deep joy! The Heath Hospital corridors are teeming with people, its coffee/lunch time and everyone is hungry (and in a hurry).
Hugging the wall to avoid holding people up doesn’t work as whatever I do I seem to be in the way! I am acutely aware that I probably resemble someone who has spent the morning drinking Special Brew and fleetingly I can see the advantage of relinquishing control to one of the handsome porters I had passed earlier in the day. But whilst I can walk, after a fashion, I intend to do so! Bugger the inconsiderate masses besides aren’t medical staff supposed to have done a compassion module to prepare themselves for such situations!
I have to say one usually expects improved performance after a service but sadly or should I say irritatingly the outcome is quite the opposite. Not only has the pain changed I am also experiencing most odd temperature fluctuations in my leg muscles. Not the skin but the middle layer alternately hot and cold – as I got out of the pool I commented to my friend as I touch the skin which was cold over the muscle which was hot. ‘Go on touch it’ I said and so she did – at the same time the teenage attendant chose to look in our direction!
It occurs to me that the stimulation reprogramming might have attempted to revert back to factory settings; but of course the component parts are in rather a poor state on account of needing a comprehensive rewiring! On reflection perhaps I should have paid more attention to the lovely ladies from Bionics rather than passively let them play with my equipment! Having seen Skyfall last night it occurs to me that a bionic implant could really enhance the Bond Girl augmenting some very special powers – insatiable energy coupled with an innovative appetite for adventure!