I don't like grumbling but I tend to find myself grumbling all the time. I thought it'd be easier one to write it all down and try and explain it especially now it's sunk in a bit and I'm working out how to live a 'normal' life.
I was diagnosed with Epilepsy in the Spring after about 4 years of messing around from the drs (that's a whole other story) I've always experienced seizures from as long as I can remember. I just didn't know that's what it was. They aren't always what you imagine they would look like. Not always what you see on the tv and hardly ever the same twice. They start in my temporal lobe... And always with this weird de ja vu. I don't mean like ooh that feels familiar- this is -I've actually lived this or dreamt this before and I know exactly what's going to happen next. Sometimes these lead to a full on tonic clonic seizure other times I will have 30 de ja vus in a day. I used to be able to stop them in their tracks by turning the radio over or changing the subject of conversation but now I can't - I just have to get myself somewhere safe on the floor and try and let someone know what's happening.
I've had seizures in my sleep too they're really scary- you don't know you're having them until you're coming around. Oh my the waking up from them is the worst thing ever. I hear screaming and loud static and the world spins. All I am aware of is that I'm trying to reach out to hold onto something and pull myself back into reality. I've had nightmares about having them too and then I wake up not knowing if it happened or not.
And Alice in Wonderland syndrome- which I found by chance and have experienced since I was a child where when I'm falling asleep my arm either feels like its on the other side of the room or the walls feel like they're right up in my face. I thought everyone got this? No.... Okay then. Anyway google told me it's linked to the temporal lobe. The temporal is on the side of your brain and controls emotions and memories and stuff, well mine sends crazy electrical signals pow pow.
The after effects of my seizure are pretty grim- I am exhausted, forgetful, emotional and ache all over. Last time I forgot how to spell and my handwriting went scruffy for about a week. Random.
I've worked out the triggers- they're extensive. Tiredness, stress, the horrible blue Christmas lights on the common in Cranleigh, ASPARTAME (steer clear of this evil chemical!) Mcdonalds (sobsob), low blood sugar, hormones, Tescos at Broadbridge Heath... Basically life in general. Ive not got photosensitive epilepsy, I know this because they flashed a bunch of strobe lights in my face during my EEG.
After 2 EEG's (one where I had to stay awake for 24 hours beforehand) a brain scan (loved the woman who came out before me and exclaimed 'ooh it's like being buried alive'- screw you woman) and my colleague describing my latest episode to the neurologist, he finally decided that he had known all along that I had epilepsy and that I shouldn't have been driving. Brilliant.
So then I started on medication. Now this was a big deal for me- I hate medication, avoid it as much as possible, I'm allergic to penicillin (although the dr doesn't believe me about that either) gave birth to two children on one paracetamol. I cried for an hour before taking my first dose of lamictal, stupidly took it at midday and then had to take it at the same time everyday. Got in a stress when the clocks went forward - who knows what time I was meant to take it then. Well then two weeks later I came out in the dreaded lamictal rash- the lamictal life threatening rash. Yippee.
Went back to GP who then put me on Epilim. At this appointment I had a full on paddywack. You know the kind when you can't breathe when you try and talk and loads of snot comes out? Anyway the GP changed the subject- obviously he isn't trained to deal with people who have been recently diagnosed with life long disabilities. This might have been why he accidentally forgot to tell me that I should definitely not fall pregnant while taking Epilim, probably quite an important thing to tell a lady in her 30's but luckily I googled it and luckily my husband had no intention of ever letting me have any more babies (it's all good I have a puppy now)
Well I won't say too much about the Epilim side effects, but they're not nice. I am losing a lot of hair as well but I've heard this settles down after a while and I had a lot to start with. I have to take this medicine twice a day. With a full meal- I know about it if I take it on an empty stomach or if I take it without 12 hours in between. Bleurgh
I won't drive again, I know I could after 12 months clear but the problem is in the past I have gone 12 months between seizures anyway- how would I ever know if it was the medication working or just a lucky run. I don't want to put my children or anyone else in danger. And also I really don't like driving, which is weird cos I was really bummed out about it to begin with.
I've started going out and about by myself again without being as scared. I have a medical id bracelet. But I stay within my comfort zone and I always have to let someone know where I am and how long I will be. I worry about my boys especially Barnaby because he worries about me, I will often hear - but what if you get dizzy? He knows who to call in an emergency, I've taught him how to put me in the recovery position and try and play it down. That's hard cos it scares me too. I feel like I'm losing relationships with my friends because I can't always get to see them and traveling alone makes me really anxious. I wouldn't ever tell anyone up front because I think they think I'm making a big deal about it or that it's not as bad as I make it seem. I also feel safest when I'm with my mum or hubby because they know what to do.
Here's the thing though... I am so lucky... I have it easy. They don't happen every day, In fact often months apart, they don't happen several times a day, I get a warning so I can make myself safe. Most of all every day I thank God that it is me and not my boys.
