I was back up at the National Spinal Injuries Centre in Stoke Mandeville
for my annual service today. Sadly not with the enigmatic Dr.J
, so none of the usual banter.
I am not sure to what extent things have settled down or how much I have adapted to my condition, but I am taking less medication, and my pain is no worse than it's been.
My bladder management is generally pretty good, excepting a few bladder infections this year, although the more I ask around, the more common the experience is, and for most people bladder management is a case of juggling (no, not with catheters or bags of urine) medication, timing and fluid intake. I have been lucky up to now that I could be rather complacent, but from here on it's a case of a little more discipline.
I am still extremely lucky to have very good skin and good circulation, so the risk of pressure sores remains low.
My bowel management is straightforward. Digital stimulation makes it sound like a computer game. A different Call of Duty, perhaps.
For anyone as yet unfamiliar with the ins and outs (oh stop it) of life with a spinal cord injury
, today's summary may offer you an idea of what the day to day experience involves. It's not that these things dominate life, necessarily, but they do play a large role, and while one adapts to incorporate many fairly icky things into daily routine, it does make it a little harder to make an early appointment, or to stay over at other people's houses.
One thing that may have changed since last year is the level at which I lose sensation. I have always been a little lopsided in this regard, with more sensation down my left side than my right, but seem to be more aware of it recently. I have noticed that if I reach for something on the floor it is harder to sit back up from the right than from the left. It's not so defined as to convince me that things may have changed, but it is enough for me to want to have an MRI to make sure that I'm not developing a spinal cyst which can increase level of paralysis by damaging nerve bundles higher up the spinal cord.
Up to now I have had an MRI annually, but ironically I was not scheduled for one this year. While I'm sure Dr.J will have no hesitation in sending me for one, today's consultant offered me a variation on one of the most insensitive cliches in spinal medicine:
"If you're paraplegic, then you can afford to lose a few levels, not like a tetra
Today's version was, "If you were T4, you'd still sit in the same way."
Er, no. My backrest wouldn0o9t be this low, my transfers would all need to be relearned, I wouldn't be able to sit upright without leaning on something, not to mention the fact that I would lose all sensation in my trunk. When one is paralysed, every tactile experience is something to value, to treasure.
Presumably, as he has no spinal cord injury, then there's even more scope to 'lose a few', sure, he might become incontinent and maybe even unable to walk, but, hey, he'd still be able to sit in the same way.
I think the point he was trying to make, albeit clumsily was that surgical intervention for a spinal cyst would not automatically be the first solution and it may be necessary to monitor things first. My point was just that. I want the monitoring to continue in the same way as was deemed appropriate over the last 5 years.
On the plus side, I did get weighed while I was up at Stoke, and I've lost four and a half kilos in the last year. This would seem to be the result of increased regular exercise, which is great. Really great. Still, if you were thinking of sending me a pie at some stage, then please do.