Epilepsy and Humility…

I have not a clue what happened. None! I seemingly texted a colleague last Sunday, when I came to, to find out whether or not I’d turned up to work on the Friday, because I couldn’t remember going. 

I couldn’t remember going, because I didn’t go. I didn’t go, because I was working from home in the morning as I was due to be going to the sleep clinic in the afternoon. Once I was told that, I can remember that. At least I can remember the working from home because I had an appointment part…My colleague asked how I got on at the clinic, my parents asked the same. I told them all – there is nothing to worry about, I could take better care of myself in terms of diet and exercise, but the sleep thing isn’t being caused by something sinister. Great!

I went to my doctor surgery yesterday and was seen by the lovely nurse practitioner. Apparently, I did not attend the sleep clinic. There was a note in my file to say I was a no-show. WTF? This was a bit of a shock. I’m still trying to process that one. So, at what point did my wiring decide that I was safer staying in my home, than getting the bus to the hospital. It takes the best part of an hour to get to the hospital by bus. It’s more or less door-to-door, but it takes the scenic route! I wonder at what point I knew I wouldn’t arrive at the sleep clinic, albeit I would have ended up at hospital!! 

When I try hard, I can remember working on my laptop on the Friday morning. I can remember Minstrel, the cat, wanting to lie on the keyboard and me making her sit on a cushion on the table as a form of compromise. Yes, I know, I know. But those of you with cats get it! But that’s it, I don’t remember anything after that. So, where did my outcome of the sleep clinic consultation come from?

Well, my theory for that is actually straightforward. The outcome I told people is the outcome I’d been hoping for. I wanted my sleep-issue to be unrelated to epilepsy. I wanted it to be something that I could regain control of and I wanted to get the metaphorical kick up the backside I need(ed) to get back to a higher level of fitness. Simple. 

So, I didn’t go to the clinic. I didn’t go to the office. I didn’t call anyone or talk to anyone. And, I didn’t wake up til Sunday. Over 36 hours just gone. The only other things I know for certain – I didn’t feed Minstrel, I badly bit my tongue, I blacked my eye, bruised my head and I’d been very sick. I have no idea how many seizures I had. 

Over the past few months, I’ve pondered the idea, tested the theory if you will, that I was beginning to recognise the warning signs that a fit is coming. I wonder if I wasn’t displaying enough humility to Mother Nature. Was this MN giving me a slap?? Have I disrespected my body too badly? Was this a lesson for me to learn?

My brain is wonderful enough to know that I needed to stay home. It is magnificent enough to be able to take seeds that had been planted, nourished over months by hope and weave the seedlings into a tale that I believed and so could make believable. My brain is a continuous source of magic, wonderment and intelligence; yet it can be described as damaged. A sobering thought.

Albert Einstein is an epilepsy hall-of-famer. He is often misquoted as saying humans only use a fraction of their brain. The usual percentage quoted is 10, implying 90% goes to waste. While I can certainly say I believe that we, as the fallible creatures humans are, have a tendency not to fulfil our potentials, I can’t believe that we use just 10% of our brain function at the levels we do, even when considered to be damaged. 

I have some processing to do. 


Epilepsy and Confusion…

What an awful week.

I don’t know what happened. I don’t know when it happened. The result has been that I lost approximately 36 hours. I came to last Sunday, believing it to be Saturday. Very confused, very bruised and an extremely badly bitten tongue. The headache and the fatigue is still lingering. My tongue is taking an absolute age to feel better.
I can’t really remember what happened at the sleep clinic. I’m struggling to try to recall anything that’s happened lately. I’m trying to stay positive and I’m trying to convince myself that the memories will come back. I wasn’t expecting this episode.
That’s a bit of a daft thing to say, because I never expect to seize, but it just seems too soon after the last one. Maybe I’ve grown too used to fitting relatively rarely, I’m just not feeling prepared at all. My mouth is really painful. I almost bit my tongue right through and it’s making me pay. There are teeth marks all around the edges of my tongue and a few splits where my teeth have nearly gone right through the flesh. I can also feel a few fresh chips in the enamel; ones that weren’t there a week ago.
There is bruising on my head and there are deep scratches down my sides. I don’t even know where in my flat I was when I the episode happened. I do know that I was very sick when I came to. Everything aches and my heart feels heavy. I’m fed up. I was looking forward to last weekend and I lost the entire day I was looking forward to most. There was no-one with me, no-one to ask what happened? No-one to talk it through with. No-one to dry the tears, no-one to tell me it’s all going to be ok. I feel very alone. I feel very lonely.
So, what’s going to happen now? 
Unsurprisingly, I’m all over the place. My confidence is knocked. Really knocked. I’m trying to tell myself that this is what happens, that I know this is what happens, but it doesn’t seem real. I know that I’m always out of sorts after a fit. I know that. But I feel different. Just how out of kilter I feel, I guess, remains to be seen. I know I’m still a bit confused with my days, I keep thinking I’ll be ok once I’ve slept, but then I’m not. I can’t remember how long this will last. 
Oh epilepsy. Why me?

Epilepsy and Solitude…

I’m worn out. Had a touch of flu, I think, and basically spent the last 4 days in bed. I may well have missed summer…
It’s been a while since I’ve written! Thank the lord for small mercies I hear you all cry! Yet, it’s back to the hospital for round two of sleep-related tests. So, even while life goes on and all is quiet, epilepsy ticks away in the background. Always.
Since someone took me seriously about how badly my sleep was affecting me, things have turned around a little. There is a strong chance that the lack of sleep was mainly down to being in a habit. As with all habits, the more you practice the better you get! I became an expert at not sleeping. The more worried about it I got, the worse it got. Then no-one really believed me – you don’t look like you got no sleep etc. Well, doh, it’s called make-up! Then, someone in the medical profession, took me seriously. In a way, it felt like a weight had been lifted and that someone was going to help me deal with the consequences of no sleep and at the same time investigate the reasons why I was sleep-shy.
Well the world didn’t get better overnight! After numerous forms and tests and a lot of habits to be broken, I have a feeling that things are getting better. I do sleep better. I know that for sure. I still have to go back to hospital, but I don’t feel like I’m going to get the news that means it actually is my medication causing the issues, or that I do have a form of sleep apnoea. It’s a strange feeling to be confident going to hospital. It’s certainly not one I’m used to.
I worked in the library service for a number of years before I went travelling. I love books. I love everything about them. If I’ve said this before, then I don’t apologise! Books hold knowledge, beauty, art, answers, questions and escapism. They have it all. And unlike the computer chip, usb stick or iPad; books have a delicious aroma that’s musty and fresh all at once. They’re tactile and forgiving, fragile yet strong. Hold a book in your hands and you can be transported on a sensory adventure in a way that I’ve certainly never been able to experience via an electronic version.
So, it’s a Tuesday. I’m working in an inner-city library in a poor, very poor part of the city. I’m surrounded by beloved books and I decided to rearrange a few shelves-worth as I collapse. I was not really thinking about the Dewey Decimal Classification system. And oh what a racket I must have been making….ssshhhhh!! I wasn’t alone in the library, but I could have been. There wasn’t much that could have been stolen, paperbacks are not really a strong currency. There was probably a few pounds in the cash register, but paying fines wasn’t the highest priority in the area. Yet, it was mentioned on more than one occasion that I wasn’t safe to be left alone. I didn’t really like that.
I remember coming to, lying on the floor of the library. Not a pleasant place to be. Not in that particular library anyway! It turned out the library had only been open a few minutes when I started to fit and there were no patrons in at the time! So, the library was closed until the ambulance came and took me away. I really didn’t want to go. The paramedics didn’t really want to leave their ambulance unattended for long in that particular area of town. Isn’t that a sad fact? Anyway, carted off I was. Ambulance intact, me less so.
Occasionally, I think about being alone and being epileptic. Sometimes it crossed my mind that they weren’t so much bothered about me, as about the contents of the library. Maybe that’s grossly unfair, but it is what goes through my mind sometimes. I worked in a bar for a very long time and it was never even mentioned that it could be an issue; me, alone, in a bar, surrounded by glasses, bottles and money. I digress. I do that often too! So, back to being alone and being epileptic. I’m lucky. I don’t require round-the-clock care, I don’t need to wear a helmet and I don’t seize multiple times a day. That, in my opinion, gives me choices and options on how to live my life. I took the decision fairly early on in my epileptic life that I wasn’t going to be a victim to it. It was and still is, the best choice for me. Oh how I wish I could have made better decision on other parts of my life! Hmm, maybe we’ll get to that later! I chose to not allow epilepsy to rule my life. It isn’t always the easy option believe it or not! There are times, probably more times, than I can even admit to, when it would be sooooo much easier to just conform. To just stay in bed every single day, in a shared house or a hospital, or god-forbid, at my parents place! To not live. It would be easier, sometimes, to hide away. Stay as long as possible in that hospital bed after an episode. Be utterly truthful as to how difficult it can be to be alone. I actually quite enjoy my own company though. I can’t stand being fussed over and being treated like a child. I quite like sitting in a quiet corner, yes, you’ve guessed it, with a book! I flatly refuse to allow the fear of epilepsy take that away from me. I enjoy, sometimes even crave, solitude.
When I’m unwell, I do get scared. Actually, scared is probably too strong a word. I get a little fearful. I know when my epilepsy defences are compromised. And I know that when I’m not feeling well, that’s when the cracks can really appear. I also know, through experience, that just because I’m not feeling well, doesn’t mean that I definitely will have a fit, but it’s the time when I’m most aware of how I’m feeling, whether my reactions are slowing because of the illness or is it because of the epilepsy…? It’s a difficult path to walk sometimes. But, I choose that. I accept that I may be alone when something happens. I accept all that comes with that. In choosing that, I also accept and take full responsibility for my choices and my life. My hand isn’t forced. It would be easy to give up and exist as others would have me do.
Life is choice. I wonder if my GGG Agnes felt the same way as I do and if she was able to act on it. I’m forever grateful that I am in a position to choose.