Whilst I was hanging out the washing yesterday, I was thinking about today’s appointment with the consultant neurologist. It is now eight months since my brain haemorrhage and I am hoping that today’s meeting will show that my recovery has moved on a stage further – maybe even allowing me to start coming off those anti-seizure drugs which are my daily life-line.
In advance of these meetings I am meant to write a page about my current symptoms so that the neurologist can assess my current condition.
It is a regular exercise in navel gazing and it is in fact, quite difficult to do. If you hit your finger with a hammer, it is easy to say how it feels but with brain injuries there are a whole set of subtle feelings which are complicated to explain.
How do I feel? I wondered as I pegged up some shirts.
Looking at those limp garments hanging there, wet and crumpled, I thought, that’s how I feel.
Clean and with all my stains removed but also washed out and hung out to dry.
For anyone who hasn’t been following this tale of my initial brain haemorrhage and accompanying brain seizures, this has been a long haul.
I was unconscious of course through most of the drama but apart from my brain injury, the seizures also led me to fracture my spine and tear most of my torso muscles. It was very painful.
It is easy to over-look progress when you are eight months into a recovery from a major illness which you wish would go away.
On the bright side, my body feels mostly recovered. I still, of course get some pain in my back and I can’t lift anything heavy. My upper arms still hurt when I move them but all the other muscles seem to have repaired themselves.
That feeling of giddiness and vertigo was cured almost in one session at the hospital’s Dizzy Clinic – yes, that is what it is called, believe me – and those strangely disturbing moments of double vision appear to have been at least improved by a new prescription from the opticians.
So what about my brain?
When my other injuries began to heal, I became more aware of the constant feeling of concussion that had been with me since I first came round from the coma. This had got me down with its relentlessness; the way it never let me forget my condition.
When you see the World with a constantly obtrusive sensation in your head, it is difficult to put it to one side. This was pretty constant until nearly three or four weeks ago, when I suddenly felt different.
It was a wonderful moment waking up one morning with the concussion feeling gone.
I suddenly remembered what it had been like being me before the haemorrhage. Then I was just someone going about my life without any self-consciousness about my brain function. If I wanted to run then I could do it. I could also go back to my kungfu club for regular taichi classes and, more wonderful still, I could restart the weapons sessions with my seven and a half foot staff.
I felt clear-headed in fact for the first time in a long time. I still couldn’t touch my toes without a bad feeling in my head and there were certainly still movements which felt beyond my capabilities. Then I have to remember that I have become so much less fit than I was when this all started.
The temptation was to do everything – the London Marathon, motorbike racing, bungee jumping. Anything that would let me get away from the limitations that have beset me since last October. I didn’t do any of that of course but the sense that I could even think it was exciting enough.
Then, about two weeks ago, I felt tired. I have had this problem all year but after a few weeks of gently increasing my activities, I suddenly felt really exhausted in a different way. Tired that wasn’t just tired. It was more like I had been drugged – I suspect a bit like that infamous rape drug that leaves its victims helpless.
Taichi, lunch with friends, a trip around town – all these activities left me wanting to lie down and sleep.
I still have it today but I can’t help wondering if all it is, in fact, is that I have picked up some virus which I would not even consider worth mentioning if I was suffering from brain damage and if I wasn’t still recovering from a serious illness. Let’s hope so. Maybe the consultant will be reassuring there.
The worrying part of that is that this feeling of, let’s call it tiredness, is also a bit like the feeling of withdrawal that have occurred for short periods ever since I came off those heavy dosages of morphine. This time though, the feeling has been pretty constant. My neurologist has considered that these withdrawal feelings are significant and could be would-be seizures masked by the anti-seizure drug, Epanutin, which I take every day.
Epanutin is a brutal but effective treatment which may have stopped my seizures but which has also, according to my regular blood tests, interfered with my liver function and blood count. I am never going to feel totally recovered whilst all that is going on inside me. So maybe the drug is the villain here now.
Hence my excitement at the possibility that I might be coming off these ferocious drugs. I can’t apparently just stop taking them – if I did I would probably have a seizure – so I will have to gradually cut down the dosage.
The neurologist hopes to do this whilst watching for any”deterioration” (scary word) in my condition. I just might become drug-free in a matter of weeks. Fantastic!
Whatever happens, I really should not complain. I could so easily have died or been permanently and debilitatingly brain damaged. If my eyes have gone a bit dodgy and I have developed a stammer then that is a small price to pay for life.
The stammer is an annoying break on my love of talking too much. It has been difficult and it has almost certainly got worse in the last month. Maybe that is a sign that there may be what the neurosurgeons called a cavernoma in my brain. A benign lesion which would require surgery. That will be decided after my next planned MRI brain scan in October.
Whatever happens, these brain haemorrhages just don’t get better quickly. It is a tough nettle to grasp for anyone as impatient as me.
Come on there, haemorrhage, I am bored now, go away.
Oh, and those shirts – they are dry and neatly folded ready to be worn again – preferably at some loud, raucous and badly-behaved party.