Monday 25 April 2011

My little box

It can be such a lonely world and in my little box that is 'my world', it doesn't really have anything in it! It has little eye holes I can see out of.
Can't see any one though, people on the outside, people outside of my little box!
Things have fallen out the bottom, things aren't put in there any more. My little box is shrinking it used to be massive! My little box has cobwebs, it's been put to the back of the shelf. By me? by other people? or probably both?
It feels sometimes like being in prison, you live for the times your family your loyal people visit, which they always do. But you have no idea what is going on in the 'real' world, on the outside. You don't see anyone else, no one else visits. Why? who knows? maybe my box is too small now?
I feel like when or if I do get on the outside, out of prision, I won't be able to cope! it will be too scary and all the people I once knew won't be there any more! it all would of changed too much. What will I do, who will be there when I finally get home?
Of course my family will, as they all dip in and out of the world that is 'my little box'.
Will I ever get out of prison or am I in for life???

Eplilm update

Seems to be helping with the seizures, only having mild and the occasional moderate ones.
Tiredness is hard work, I am struggling with tiredness every day.
Weight gain. Increased appetite.

Back to being a fucked up foody!!!

Great, my drugs are making me fat. I want to cry. I've struggled with my weight most of my life having to watch and be careful with what I eat and as an adult I've needed to keep going back to weight watchers to keep it under control.
My last drugs actually lowered my appetite and I became a weight I was happy with. I wasn't thinking about food all the time, I wasn't eating just for the sake of it, I wasn't troffing and I felt comfortable in my clothes. It was sooooo nice to be like that, without it being any effort. To be able to eat a little bit of what I liked and for the first time food not being the centre of everything.
Maybe I was just a fucked up foody before and those drugs made me a bit more 'normal' without food issues.
But know its back to all the food related shit again. I'm putting on weight really quickly as well. It's soooooo depressing for me.
But as always I will try and keep a hold on it :-(

Thursday 14 April 2011

Drugs update

List of drugs tried and tested. This is where I'm at now and I'm still on 3,7 & 9

1.Keppra
2.Carbamazapine
3.Lamotrigine -reduced & will reduce further
4.Oxcarbazine
5.Topiramate
6.Phenytion
7.Clobazam -reduced (very small amount)
8. Zonisamide
9. Epilim -NEW

The only side effect of Epilim is tiredness, which I am struggling with a bit at the moment.
I am still reducing Lamotrigine, so my seizures still happen. But Epilim is looking good at getting some better seizure control. Fingers crossed (as always).

Sunday 10 April 2011

I bet you don't even realise

People always say the phrase 'You don't know what goes on behind closed doors'
Well I bet you don't even realise........................

That I want to have another child.
That I can't go out the house without an adult to supervise me & Jamie.
Can't take Jamie to school, the park, swimming, even somewhere simple like shopping at Sainsbury's or take him out on his bike on my own.
I'm never going to be able to drive again.
I can't or will never be able to ride a bike again (you'll never forget how to ride a bike!) does it fucking matter now!?
I will only on average live for about 6yrs (if lucky) So 2.5 down, 3.5 to go!
I have to rely on my 4yr old son to use a speed dial phone when we are in the house on our own.
I have to employ someone to babysit me, so I can go out.
I have to have this person in my life, which is not by choice but necessity.
Can't use my trike any more.
I have to wear a walky talky alarm watch on my wrist just so I can go to the toilet on my own
Can't have a shower on my own (until the shower is changed)
Can't lock the bathroom door in other people's house's, unless Jamie comes to the toilet with me.
Can't do baking with my Jamie unless someone else is in the house.
Can't just pop out for chocolate.
Can't go on the bus.
Can't drink, unless I want to pass out and have more seizures.
Can't take the bins out, do gardening or any outdoor related stuff etc.
I don't have the chance to increase my son's interaction with other children and to help him make new friends.
I want to make new friends & socailise with my people of 'Choice'.
I can't do things on my own, have me time, go were I choose when I choose to do it.
Lee does all the cooking, ironing and most of the housework.
I have a volunteer to help me do my food shopping.
Can't exercise.
Can't do my job.
Spend a LOT of time in my house.
No one visits us, or if they do its very far and few between.

These things are all as a result of my seizures. If I was to attempt a lot of these things, it would put me and Jamie at serious risk. I can't just 'get on with it'.
I was thinking the other day 'what do other people that have uncontrolled epilepsy do!? do they have carer's? do they just risk it and go out? I was thinking I'd never just 'risk it' with Jamie, but what if I just went out on my own!? it would be really fucking scary (to start with) and I thought what could be the worst that could happen? but then I realised I could fall into the road.

If I was reading this I would think........Sounds like her arms and legs have been cut off!! Or how fucking depressing is all of that!!
The upside is:
I don't have to have someone wipe my arse or wash my fanny for me (just yet) well depends how lazy i'm feeling :-)
I can still feed myself the chocolate that someone else has gone out and got me. (well not at the moment as i'm getter LARGER)