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.

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