We spinies, those with spinal cord injury, have a number of wonderful medical conditions. Of these, one of the most dangerous is autonomic dsyreflexia. It generally affects people with an injury above T5/6 (I'm T2). Dsyreflexia occurs when there's something wrong below the level of your injury (blocked catheter, broken leg, ingrowing toe-nail). With diminished or zero sensation, you can't tell there's a problem. Because the brain can't get any messages through the spinal cord, the body uses what seems like a stone-age response to let you know there's something wrong: it puts your blood pressure up. And up. And up. You can take a drug, nifedipine, that will briefly reduce the blood pressure and buy you a little time. Hopefully, you can then find the source of the problem and resolve it so your blood pressure drops. If you can't, you suffer a stroke. You die. It's that dangerous.
They lecture you endlessly about dsyreflexia in the Spinal Unit. I experienced it mildly in hospital - one of the symptoms is a splitting headache - but it was quickly sorted. I've therefore never really paid that much attention. Big mistake. Huge.
On Friday I was on a man-date in Bath, watching I Love You Man, that new genre of film - a bromance. I started to get a splitting headache but was desperate to get to the end of the movie (not that it's that special. I just like endings and closure). As soon as it finished, I rushed to the loo and sorted out my bladder. Still a pounding headache. Then I threw up.
If you have a higher level spinal cord injury, you should carry nifedipine with you (and a card that explains the symptoms and treatment of dsyreflexia) at all times. I lost the card ages ago. And the drug itself is very tedious to carry about. It comes in a soft shell that you bite on, spit out and then swallow the liquid drug. But the pills always fall out of their packaging and the shell becomes sticky when wet. Not ideal for keeping in a bag under your wheelchair.
By now, I'm panicking. I'm obviously going dysreflexic and emptying my bladder hasn't resolved the problem. There must be something else, and I don't know what it is. I don't want to die. I've been through so much, survived so much. I really don't want to die now. I scrabble about for the nifedipine to buy me a bit of time. I can't find any. I empty out everything from the bag under my chair. Lots of painkillers. Lots of anti-spasm drugs. Penknife. Pens. Cheque book. Screwdriver. Nail clippers. No nifedipine. Headache getting worse. Finally, scratching about in the dusty corners, I find a single pill. Bite, spit, swallow. I now have about half an hour to find out what's wrong before my blood pressure goes up again.
I call the Salisbury Spinal Unit. They tell me to drive home, check my bowels, lie down and check over my body to see if I've broken anything. I drive fast. Half an hour later I'm in bed, bowels sorted, no obvious bones sticking out, feeling safer. Spinal Unit call to say that if I'm still feeling ill and am worried, I should call 999. I take a sleeping pill and am knocked out for thirteen hours.
The whole episode was quite terrifying. It's a shocking reminder that living with spinal cord injury can still be dangerous. Most of the time, things are pretty good. I feel lucky that things are not worse. This brought me up cold.
Still, I learnt a couple of things. One, get a case for the nifedipine so that it's always there and easy to find. Get another copy of the warning card. And don't drive home alone. If my blood pressure had started to go up again, I probably would have passed out at the wheel. Next time, if I'm with someone I need to say "please drive me home. And if I pass out, take me to emergency".
