I've had moments of deep fearfulness after my recent near-death experience with autonomic dsyreflexia. The worst were the days immediately after the attack. I'd had an ongoing bad headache but thought it was to do with my familiar state of exhaustion and pain. "If I go to bed early and have one restful night, I'll be fine". So, drugged up with painkillers I'm in bed by 9pm. It's a fitful night and I keep waking to find my head is still throbbing. It's unlike my normal headaches.
At 4am I'm wondering whether something's happened to my brain. The pain is extreme and very localised. I'd waited for a long time in the cinema as I was going dsyreflexic. Your body tells you there's a problem by putting your blood pressure up. Because I'd left it for so long, had my blood pressure gone up so high that I'd burst a blood vessel in my brain? Is that why I had such an agonising headache now?
I call Tamar Ward in the Spinal Unit at 4.15am. A familiar voice answers, recognises me and listens to my concerns. She doesn't laugh at or pour scorn on my fears. She asks about the symptoms, gets me to move my head and feel my neck. "You haven't damaged your brain. When you slept for thirteen hours after your attack, you slept in an awkward position. I think it's probably a trapped nerve. Go and see Jules for a massage. And if you're still worried, go and see your GP".
I'm lucky that I've got someone to call at 4.15 in the morning. Someone who'll listen and reassure. Someone who understands what's going on and who knows what to do. It makes me think about Elle over at Stiletto Wheels who, when comparing "neuro-wheelies and the broken spine wheelies" wrote: "The Health Service doesn’t really like us because it cannot make us better. We are often told, 'it is all in your mind' because our illnesses are internal, not obvious. We have to fight to even get doctors to look at us a lot of the time. We depress medical professionals – we cost a lot, we give no job satisfaction – we just keep slowly deteriorating, whatever they, or we, do. We get NO rehabilitation, NO physiotherapy. We get bags of numbing medication; we go home and learn to live with inexorable, unpredictable, deterioration, alone and in silence... OK, maybe not in complete silence!"
I can even go to the Spinal Unit for supplies. Yesterday I was visiting my sister when I leaked. I was wearing a leg bag, bypassed and had no catheters. Since she only lives twenty minutes drive from Salisbury Hospital, I hopped in the car, drove over to the Unit, picked up some catheters and sorted myself out. It was worth the lecture I got about how stupid I was not to carry catheters with me.
And yes, it was a trapped nerve. A few days after an intensive massage, my neck was fine and my headache gone.
