Epilepsy and Feelings…

The best things in life are free? Rubbish. The best things in life can be bought pretty cheaply in Aldi, or Waitrose if you’re feeling extravagant….Are the best feelings in life free? Or, are we just free to feel..?

It’s been a pretty crappy week. I’m not entirely sure why, but I wound myself up into a right frenzy over the latest EEG. Lost it completely at work, never a good thing, and basically just got myself tied up in knots over something I can’t control. Those feelings of frustration and helplessness were certainly free, in monetary terms anyway. I had to stay awake for 24 hours without caffeine. Why is it that when you want to sleep you can’t and when you need to stay awake you could sleep on a chicken’s lip?? I’m grateful for a text conversation with a great friend at 3am, who was awake feeding her young baby. And to another great friend who was on holiday and in a different time zone…I cleaned to help me stay awake. My place is gleaming. Or, at least it was…

The morning came slowly and I made my way to the hospital. I was wondering who was going to bear the brunt of my fatigue. Kirsty with no sleep is not pleasant. Kirsty with no sleep or caffeine is a pure bitch from hell. As it turned out, I couldn’t be bothered to even get irritated. I’m very familiar with the Dept. Of Clinical Neurosciences. The room where they perform the EEGs is basically right opposite the psych. ward. I know this because I’ve been on this ward. This is one of the wards that I tried to make a bid for freedom from. I’ve banged on those ward doors and I’ve yelled at nurses, doctors, paramedics, anyone there really. So, they decide to perform a sleep-deprived EEG in a small, shabby room just over the corridor. The room is right under a bathroom, right next door to an office and, at the moment anyway, overlooking a building site. So, I’m lying on the bed with the electrodes in place. The physiologist closes the curtains, switches off the lights and asks me to try to sleep. Someone pees upstairs. Thankfully they flush, but not sure they washed their hands…, the office next door is busy with people going in and out, door slamming each time. The builders are having a not-so-polite conversation with each other as to whether it was time for a break. I want to laugh. Really? Sleep? Someone, presumably on the psych. ward, starts screaming out that they’re trying to kill him. I find this a bit upsetting. The distress in his voice was as clear as a bell to me. I wanted to get up and go to him. But, I lay where I was and tried to tune out the ambience.

The sound of that man’s cries have stayed with me. I don’t know why he was in that ward, I don’t know whether he was young or old. I don’t know whether he is still in hospital or whether his visit was as brief as mine often are. I can’t help but wonder if he was there as a result of a fit.

Lets do some deep breathing exercises to help you drift off says the physiologist. Really? You think deep breathing is going to drown out the noise? I want to laugh again. I follow instructions though and breathe deeply. I’m still fully aware of my surroundings, but I’m definitely exhibiting some of the ticks and jerks I have when I’m super-tired and trying to sleep. I can’t relax. The curtains open and I think to myself that she’s given up and the scan will have to be rescheduled. To my surprise, she announces that it’s over and that they did manage to record me sleeping. I will admit to being completely surprised by that. So, equipment removed from my head and chest, glue still in place, and I’m dispatched home. I sleep for a couple of hours and scared that if I sleep too long, I won’t sleep through the night I get up. I shouldn’t have bothered. I couldn’t sleep at all. Over-tired I guess.

After one particular episode, I woke to find myself secured to a bed in what turned out to be a psych ward. Tubes were in one arm and the other was so badly bruised it was barely recognisable. I had been in a very distressed state when I’d arrived at the hospital about 24 hours before. I had to be physically restrained by multiple medics such was my distress. I was fighting hard not to be there (probably because I didn’t want to have to wear a modesty gown). The fits were not stopping and I was injected with a drug that I react badly to and things declined. I was also bleeding from a gash on my chin which had happened during the initial seizure. Eventually they managed to control the fits and administer a sedative. When I came to, I hurt everywhere. The headache was just terrible. That dull, deep, stab of pain. My body was racked with aches and bruises. There were long, black stitches trailing from my chin. I was told what I’d done and felt pangs of guilt over it. I had no recollection whatsoever. This made me upset all over again. I hate the thought of others suffering for my epilepsy, especially those that are trying to help me. Tears flowed out of me for most of that day and for many subsequent days as I try to come to terms with who I am.

Feelings. We all have them. Some of us hide our feelings, some of us don’t. Some of us fight our feelings, some of us don’t. Some of us try to pretend we’re not feeling what’s beating in our heart and some of us proudly project the feelings in our soul, no matter what they may be. A lot of us hide certain feelings and increase the intensity of others deliberately in order to compensate. We may pretend we don’t feel a certain emotion or we may try to suppress some feelings, but we can’t hide from ourselves forever. At some point, sooner or later, the truth will out.

If feelings are free, then we are free to treat them in any way we wish. We have the freedom to choose how we react to a feeling, emotion, situation. Our own reactions are the only ones we control. My Gran used to say “better out than in”. She was using it in terms of, well let’s say digestive ailments, but it can be applied to so many other situations. Choosing not to suppress a feeling doesn’t mean you have to broadcast it to the world. No, simply acknowledge it, talk about it if you wish, just don’t deny yourself the power that comes with the freedom to feel.

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