Meet my epilepsy, will make the rest of this blog make sense!

Well, I kind of guess this is where it is going to start. Just a small chronicle of my life that I am hoping that not too many people read. Sometimes there is just too much running round in my head it is easier to get it down on proverbial paper.

So, were to start. I am 38, 39 a week on Monday. I am getting married 4 weeks today too. I have two teenage children, and two teenage step children to be and somehow, by the grace of whatever you want to call him, they all get on. I can genuinely say that I have never been happier in my life which is saying something. I have not had it easy and am the first to admit that about 75% of it is of my own making. Ah, did I mention too that I am disabled?

I think I have had epilepsy since I was 2 years old, when I contracted meningitis whilst living in Trinidad. I wasn’t formally diagnosed until I was 17 though which made school fairly interesting. The type of epilepsy I had was what is know as temporal lobe epilepsy which lead to some fairly unusual situations in my formative years. It can be quite unnerving getting a bollocking for something you genuinely have no recollection of!

Anyway, I hadn’t meant to go into so much detail back there, plenty of time for that at a later date. So, on with the epilepsy theme for now. We got it under control by the age of 21, and by 24 I had my drivers license, 2 kids and a good job. I had split with their father as he was physically abusive but I can honestly say that I was content in my life. Life kind of drifted by which was fine by me.

Fast forwards a fair few years and I was sat in my husband to be’s bedroom and out of the blue, went into what is known as status epilepticus. To save boring anyone still with me to death, it means going into a series of really big fits that I couldn’t get out of. So, cue 999, loads of what I thought unnecessary faffing around at the hospital and a night in ICU.

Little did I know that day last March (31st to be precise) has turned my life upside down and inside out. My seizures are now completely uncontrolled, I can’t be left alone at all (although a baby monitor has saved my life on more than one occasion!). Nope, not even the toilet on my own. 24 hour supervision. I am clinging onto my marbles for all I am worth but just put yourself in my shoes for just half an hour and you will see what I mean.

I have had seizures EVERYWHERE. Supermarket? Check. Chemist? Check. Fishing tackle shop? Check. The list is endless. Funny thing is, that each time I have a seizure, my world seems that tiny bit smaller. I can’t really think of any other way of putting it (I am probably having temporal lobe activity right now, it wouldn’t surprise me as I have auditory and visual hallucinations too).

So, with all this to content with you can imagine life is pretty interesting at the moment. I did however leave something out at the start. 5 years ago last February, I got sciatica. Yep, I know, very common thing. Unfortunately I was misdiagnosed and I actually have a benign tumour on my spine, and a double disk herniation (L4/L5, L5/S1 for anyone that is interested). When I say I didn’t leave the house for 18 months due to the pain, I am not lying. All I can say is I don’t know what the hell I would have done without internet shopping and a very understanding GP.

So I guess that paints a picture of where I am at at the moment. I can’t walk unaided, I am doped up to the eyeballs on medication and have had to concede defeat. I have been resisting for 4 years against all professional advice and refused a wheelchair but 2 weeks ago, I realised in what I believe was a ‘moment of clarity’ what my stubbornness was doing to my family. I can’t be left alone, I can’t walk, so I have, and to be honest – reluctantly, ended up in a wheelchair.

Don’t get me wrong, this blog is not going to be all doom and gloom and me, me, me, but I am just setting up where I am in my life, so that the rest of my posts will (hopefully) make sense! Lilith (yes, I have named my wheelchair, and for anyone who might have spotted it, a HUGE Supernatural fan) and I are off to town tomorrow courtesy of the husband to be. There are a few observations I have made since the transition into the chair, so I hope to NOT have a seizure and be able to share them with you tomorrow. Things that you might be surprised at and how suddenly, my IQ has dropped by at least 30 points!

I do have to be honest, this is my first blog so I know I am going to get it wrong, but I am determined to at least do something when I am stuck in bed. I think that tomorrow, I will report back on how Lilith and I get on and tell you about the love of my life. And believe you and me, there DOES lie a tale and a half!

So, on a seizure count of 0 today, I shall bid you farewell.

Sarah