Thursday 30 August 2012

Step away from the spoons



Hello again!

It's been a while, again, I know, but I promise I have a good excuse. Well, I have an excuse at least.

A lot has changed in my life. When I last posted, I was living in Edinburgh and I was at university studying for my masters degree in Publishing. Well, my degree has been and gone and I'm happy to say that I passed. But not only that, but I managed to secure myself my first ever grown-up job in publishing. But in order to take the job, I had to move approximately 400 miles South, to England, a country that does not have square slice sausage, 'fizzy juice' or often the ability to understand my accent (it's Jane, not Jean). 

As I found when I moved to Edinburgh, moving to another city and meeting new people means explaining your epilepsy to a whole new set of people. People with varying degrees of knowledge and understanding about the condition. As is obvious from this blog, talking about epilepsy is not something I mind. However the difference between living in Oxford and Edinburgh is, for me, the distance I now am from The Mother, and everyone else who knows my epilepsy - and me - inside out. 

No one knows me. Not even a little. I had to start from scratch. Where I'm from, how many siblings, what my parents do. But unlike most other people, I have to give a brief medical history with the story of my epilepsy. Most people are intrigued by it I have found, and I encourage them to ask as many questions as they can think of. I find it immensely satisfying to hear someone ask 'so what should I put in your mouth?'  and to be able to correct them, knowing that, in the future, were they to see anyone having a tonic clonic seizure, they would know that the answer was nothing. Step away from the spoons. 

In regards to my epilepsy on a personal level, I have had one tonic clonic seizure since moving to Oxford. I had been drinking the night before and had an unsettled night of sleep as a result. In the morning I had very severe myoclonic jerks and I half-knew that I was going to have a tonic clonic seizure. Lo and behold, I woke up later with that unsettling, familiar feeling of confusion mixed with pain and a dawning realisation that whoops, I've had a seizure. And the relief, always the relief, that at least now that means it's over. 

I have, for a while, been avoiding increasing my medication but after that seizure I decided enough was enough, and so I have made an appointment with the neurologist. It's a difficult one. Although Epilim (the only medication that works for me) controls my seizures completely when I'm on it at a higher dosage, it comes with side effects. Epilim was the first medication I tried when I was diagnosed at the age of 12, and although it stopped the seizures, it also made me unbearably hungry. It sounds trivial now, but I was hungry constantly. I'd eat a full dinner and be hungry within ten minutes. I took to hiding loaves of bread in my room so The Mother couldn't see me. Before long I had developed quite the gut, and looking pregnant at 12 is not a good look. 

I'll make a decision eventually, but it's a difficult one!

To end on a cheerier note, here's a picture of me on a recent trip to Norway, pretending to be a moose. As you do.



1 comment:

Anonymous said...

I couldnt have said it any better to be honest! keep up the awesome work. You are very talented & I only wish I could write as good as you do :) …