2.5 Seizures and Counting.

I feel tense now, as though I have been wound tight. I can feel the itchy, fidgety sensation across my shoulders and down my spine; on the backs of my arms and calves; across my brow. I'm on a hair trigger, waiting for the seizure to out or dissipate. Hopefully sleep will do the latter to it.

The worst part is the waiting. Knowing that it's coming, that it's only a matter of time and there's nothing anyone can do about it. Day after day, it's always there, and it makes everything worse. I tense up because I am scared I'll have a seizure, and the seizures come because I am tense. Now that I've entered this spiral where seizures are happening every day it's just feeding itself.

I'm too exhausted, both physically and mentally, to do much about it. My neurology appointment isn't until September, and my appointment with the epilepsy nurse has been cancelled until further notice. No one can help me until they can see me, and what I really need - more tests - are long waiting lists away even then. There is no overnight fix, just a long, dim corridor that has the hope of brightening again some day.

After my second seizure today, I had planned to call my local branch of PALS and see if there was anything they could do.  But there isn't, surely? They can't magic an appointment out of thin air, and they can't make my epilepsy go away. Sure, they could help me complain and I could get a nice letter of apology for being so sincerely screwed over by the lack of epilepsy care in the UK, but how does that help me and my family? How does it help when I'm lying on the floor, twitching and shaking all over, and when my son comes over and pronounces solemnly that I shouldn't sleep on the floor but on the sofa. (He was corrected, at which point he said: "You don't have seizures on the floor, you should have them on the sofa!" Fair point, O. Fair point. It's a lot more comfortable to be sure.)

I shouldn't feel trapped in my own home by epilepsy. W shouldn't feel constantly exhausted and worried because he cares for me 24/7, constantly on the watch for odd behaviour that could be a warning sign. O and M shouldn't have to have a mother who vanishes for parts of the day and is barely fit for purpose at others. I have moments where I just want to scream with frustration. But screaming doesn't help either. And when I calm down, I just remind myself that it could be worse. After all, I've never severely injured myself during a seizure. I'm not in pain. As a nurse said to me before my gall bladder operation, apart from the epilepsy I'm in remarkably good health.

It makes you wonder just how badly the people who aren't as fit as me are being let down.