2

Epilepsy and Goethe…

I’m ill. Again. I’m tired and I’m stressed out. I’ve let too many people down too often lately and it’s weighing heavily on my mind. I’m a donkey on the edge! As proclaimed in Shrek.

I don’t know which element of life is causing the most stress just now. I have no words of wisdom for myself and I’m burying my heart and soul oh so deep. I’ve become more selfish and self-centred as the days have passed to the point where I’m consuming myself.

I used to look around me and be able to see beauty and truth in most, although definitely not all, things. Now I see decay and dishonesty in most things, including myself. Epilepsy is part of it. Epilepsy is part of everything. I cope pretty well with having epilepsy. As a general rule, it stops me doing absolutely nothing that I want to do. I’ve kicked epilepsy’s ass on much more than one occasion. It’s really just booted me right back. Hard.

Have I had another fit? Well no. So what’s the problem? I’ve talked before about how I remembered so much more about how I felt in the lead up to the last batch of fits. A couple of days ago, I felt those same feelings. Add to that I was quite violently sick. I feel scared. I feel disjointed. I feel the headache. I feel the fear in my chest, beating as quickly as my heart. And I’m so very very tired. Yet, I can’t sleep. I’m lying in bed typing this because I’m too tired to get up and too tired to sleep. My mind is whirring, my head is pounding and I know in the depths of my being that my body is crying out for sleep. Sleep will stop the decay. Sleep will clear the fog shroud covering my over-worked mind. My mind, my glorious mind is making me think I’m going to fit by replicating those same feelings from months ago.

My mind is me and I am my mind. I have so very many great, happy memories, so why do I, my mind, currently choose to dwell on those that cause me most physical and emotional pain? My rose-tinted spectacles have been replaced by black-tinted ones and they’re making everything darker. It’s so dark that I can’t locate the dimmer switch in order to lighten things up!

Am I just feeling a bit too sorry for myself? Yes, quite probably.

The whole art of living consists of giving up existence in order to exist. Goethe said that. Albeit he said it in German. I think he was getting at the notion that an existence isn’t a life. A life is what you go out and create for yourself. He also asked how a person could come to know themselves? He said it could never be by thinking, only by doing. Again, he probably said it in German. He’s right though. You can’t know what you’re capable of, until you’ve tried something and pushed yourself outside your boundaries. You can think you can do it, you can formulate a plan of how you can do it, but you can’t truly know what you’re capable of doing, who you are capable of being until you try. So, plunge boldly into the thick of life and seize it where you will. It’s always interesting! Yep, he said that too. In German.

I’ve found, the older I’ve got the harder I’ve found it to seize life. I want to seize life, I think about seizing life, I read Goethe’s maxims and I believe I can seize life, but I don’t. So what happens? Life seizes me. It plucks me up by the scruff of my neck and flings me down the stair of existence from the light to the dark and watches me flounder. I can almost see life as a form standing at the top of the staircase with hands on hip throwing back it’s head and laughing. I cower in the dark, it’s safe there. After all, there is no further to fall. But it’s a dim and lonely place. I don’t want to be forever pale. I’m Scottish, so I’m pale enough as it is. I want a tan and the only way to get that glow is to climb the stairs into the light. Fake tan doesn’t last. It smells, it streaks and it’s orange. True radiance comes from within, but that refulgence isn’t obvious if you’re cowering in the dark.

I came to in hospital one time and I could not see. “I’m blind!” I wailed. I wasn’t. The bad part was I’d fallen on a chair at work and one eye hit one of the castors of the chair and my eye was so badly swollen, it closed. I think the other eye just came out in sympathy. The good part was that I couldn’t see I was wearing a bloody vanity gown! Life can’t be all bad…

3

Epilepsy and Fatigue…

I’ve been struggling immensely the past couple of weeks with the dreaded tiredness. I’m tired but I can’t sleep, when I do sleep it’s restless. I get out of bed most mornings more tired than I was when I slipped under the duvet.

I’ve been wearing a sleep monitor. It registers how much time you spend in bed, how many times you get up, how long you spend asleep and how long you spend in a restless state. Its not scientific as its based on movement. So, if you’re wide awake but lying still, the monitor thinks you’re asleep. The results so far have been not entirely unexpected given how I’ve been feeling. In an average night of approximately 7 hours, the monitor logs me as asleep for about 3 hours. I get up 2-3 times and the rest of the time I’m in a state of restlessness. No flaming wonder I’m tired all the time!

To say my lack of sleep is getting me down, is an understatement. The headaches that accompany the sleep deprivation are debilitating. They’re a constant and no painkiller seems to touch them. I don’t like taking painkillers, I kinda think I take enough drugs as it is. I try to use tiger-balm, or work on the pressure points in between my thumb and first finger to try to relieve them. I drink plenty of water, so I can reassure myself that dehydration is not making them worse. I still drink too much coffee and I dare say that doesn’t help with the headaches, but who knows. I try to have my last coffee of the day early afternoon and apparently that means the caffeine should be more or less out of my body by the time I go to bed.

I had a sleep-deprived EEG last week and staying awake for 24 hours before hand has thrown me off kilter all the more. My poor body does not have a clue what’s going on! Neither does my head come to think of it. I’m sick and tired of being sick and tired. There seems to be no bloody end to it. I want to go to bed at night, put my head on the pillow and just sleep. I don’t really care for how long, I’m more interested in the quality of sleep I’m getting. If my monitor is to be believed then the vast majority of time that I’m meant to be sleeping I’m actually thrashing about, tossing and turning and generally not in the land of nod. This is not good.

I’m hoping the EEG is going to help pinpoint the root of the issue. I’m hoping its going to prove that the amount and quality of sleep that I get has an adverse affect on my epilepsy. I know that my fits are more likely to happen when I’m tired, to be honest, I’m beyond staggered that I haven’t had an episode in the last few weeks. Apart from a fainting episode which may or may not be related, I’ve managed to stay upright…I know I’m exhausted and I try to rest, but I can’t switch my darned mind off. It bloody well knows I’m knackered but it still goes for it like you wouldn’t believe. My friend made me some meditation cds to try to help, but to be honest I just can’t seem to get into the groove of them. I know it takes persistence, but there’s the rub, I’m too tired to be bothered to try to meditate, to try to quiet my mind. It is such a vicious circle!

I have a couple of friends with very young children who still need nightly feeds. I am beginning to understand their state of sleeplessness and marvel how they then can get up and look after the small people during the day. It makes me feel a bit ashamed that I complain so much about my lack of sleep. But, I suppose that they know why they aren’t getting the recommended amount of sleep. I think, for me, one of the hardest parts is actually not knowing the reason why I sleep so badly and if or why these negative sleeping patterns are affecting my epilepsy. When I say I’m tired, I see the look of disdain cross the face of the person I’m conversing with. They understand tiredness, who doesn’t? The constancy of it is what’s slowly breaking me and that’s what doesn’t come across when you tell someone you feel tired and headachy. It’s my least favourite combo and the time when I feel the greatest fear.

I used to work in a tobacconist shop. I had a fit there once, when I was 17. Right in the middle of all the jars of shag. I loved the smell of the different tobaccos. I still love the aromas. I don’t remember feeling this fit coming on. The first thing I can recall is the owner of the shop taking me to his house so his wife could look after me until my parents could pick me up. Luckily for me, they were family friends, so I was in safe hands. The owner said that I was alone in the shop and I started the fit just as he arrived. It was an early mid-week morning. Knowing what I do now about the lead up to my fits, I suspect that I possibly wasn’t the most helpful shop assistant that day!! I wonder how many patrons I offended?!

I know I’m not myself at the moment. The thoughts are ping-ponging and the fatigue is draining. There are times when I just want to throw in the towel and let the fatigue take me to the seizure that waits around the corner. It’s there, it’s that constant threat. I just don’t know which corner it’s lurking around. When will it leap out and yell “surprise”? When will it take my legs from under me and take control of my body and brain? When will it push me to my physical limits and then leave me on the black side of the door to darkness?