I hate being me

People always say "there are always people worse of than you" as I did in my last post.
But I got to thinking I am one of those people!!!.
I'm sure that when people visit me, speak to me, read my blog etc, what ever they are going through would feel a lot better or feel 'lucky' that they are not me or living my life!
I don't think my problems are any worse than other people's, but just maybe I make them feel a much better about their lives. I am having a really 'HATING BEING ME' time at the moment.
I've started on the wine again after not drinking since September! I don't really give a shit about what it does to my seizures as I'm having fucking horrible one's anyway, so why not? I might as well enjoy a bit of wine!!

I am waking up in the morning at the moment hoping I had a different life to live. Wishing I didn't have to worry about whether I might or might not have a seizure that day.
Anyway I am moaning on about the same old shit again.

I fucking hate living with seizures

I just get so fucking fed up with it all.
Not being in control of my life or what is happening to me
Living with these seizures and knowing it's always going to be that way
Medication: taking it everyday, trying different drugs, different doses, side effects etc until I can just get the best I can hope for.
Not being able to drive (oh that one again!!)
Blaaaa Blaaa bla. Yeah Jane we have heard it all before.

It's shit enough having a brain tumour but why do I have to live with these fucking seizures?? I HATE it. I HATE them.
They take away your confidence, your self respect and your desire to go out and socialise. When they happen, you feel embarrassment. not only for your self, but for the people that know you and the people that don't. You can worry sometimes about your safety.
I worry if I might fall over and if someone would help me. If someone might lead Jamie away! etc etc.
and then you read something like this.....

Submitted by Mayville on 8 March, 2010
I have been taking Epilim at 2500/day for over two years. I have had hair loss,skin rashes, psuedo parkinsonism (shaking hands), total memory blocks, irrational / compulsive / erratic behaviour which has cost me a lot of money in just buying dumb things that I would never have bought before I got this drug.
I was on carbamazepine but I had severe rare reaction to it, my teeth chattered together like a sewing machine, really fast & even in my sleep. I was moved from carb. to valproate and the truth is that my Doctor says, the type of hyperconvulsive events that I have, there's very few options on the market that are effective for me. More modern medicines have fewer side effects for most people, but for some seizure disorders valproate is the only solution that is a solid defense against the events.
I consider myself lucky really ,despite the side effects. Before I got Depakine and then the Epilim, I had hyperconvulsive seizures that broke : both hips, 6 ribs, both shoulders. Ive had lungs full of blood, and a 1.8 minute flatline. All just from banging against the floor. But since I got valproate 2 years ago I haven't had a single seizure, despite the side effects.

I know there are always people out there worse off than ourselves, but it doesn't make it any fucking easier to live with your own situation every day, does it???

Over time will I come to think 'fuck it, It's gonna happen whether I like it or not. Don't really give a shit any more. It's a seizure. I look and sound a bit of a twat for about 30 secs and then its over'? but then my meds might control my seizures to the point that my hand only twitches and I feel a bit dizzy and no one will even notice. Who knows?

All I know is that I fucking HATE them and being told I will have to live with these fuckers for the rest of my life is fucking depressing la la.

Topiramate is not my mate!!

Lots seem to have gone on since my last med update.
Side effects on Topiramate:
1st: I had headaches which have decreased in intensity, but are still there. Tiredness came in with a whack and has decreased slightly but is still dragging me down big time!!
2nd: Increased dose, the above side effects + the next lot of side effects: difficulty sleeping, waking up regularly, vivid dreams and shouting out in my sleep.
My consultant said to see how it goes before discontinuing the drug as the side effects may decrease and may become manageable!
3rd: Increase dose again, all the above side effects + more side effects: Difficulty concentrating, unable to multi task, difficulty finding words, short term memory problems etc oh and even more tiredness!!
so emailed my consultant and said ENOUGH NOW, what's the plan?
I'm soooo tired I can barley keep my eyes open half the time!!

Having the choice

Do I to drive?
Do I to what medication? to what treatment?
Do I to have another child?
Do I to having seizure's?
Do I of a job?
Do I to a life?

Do I have the choice?........Do I REALLY????

It's a shitter....

....Not to dwell on things, but it is a right shitter having a brain tumour. I'm having a bit of a crappy, shitty and basically fucking poo time thinking about the future and all the tumour type things that will and can happen to me. All the things that can't happen and won't happen in my and my families future because of my tumour bla bla, etc etc.
This happens every now and again, tears my heart apart, makes me cry and then I just sort of get on with it.
Maybe its all this epilepsy stuff that's brought it all on this time. I think being on hols gives you the time and space to think as well. Maybe it's just me being a 'dick'

Gutted!!

Got to thinking about tumour shit (again), coz of what Julia is going through at the moment.
Even though I'm reminded of having a brain tumour every day and have excepted its gonna kill me and I'm gonna die.
Sometimes it's just sitting there in the back of my mind, it doesn't fill my every thought of every day and I do often think things like 'I might not see Jamie's first day at school' etc etc
But I also think the dying, getting worse, growing thing won't be sort of happening for a few years yet. I don't mean silly amount of years! but maybe like 3yrs at the earliest!!

But what's has made me re think about it all this week is a couple of things really.
Lee's boss called him in for a meeting to discuss shifts etc as they have been accommodating Lee at work since my diagnosis. His boss asked Lee "where do you see yourself in 2 yrs time" (I think that is a really fucking stupid question) and Lee said amongst other things "I can't see past 2 months and it would depended on how ill Jane was and whether she was still here or not".
Also and I'm sure Julia won't mind me saying!? she was only diagnosed 6 months before me with exactly the same type of tumour! and for both of us the best scan results we can receive is 'no change' and Julia's results this time around showed 'change'.

So these things have made me re-realise the time scale I've got (2-15yrs) I think someone has lived 25yrs or something like that! but he was extremely lucky and as we know, that is defiantly not me (lucky). Anyway you sort of hope your somewhere in the middle and I thought 'yeah that sounds about right' and I think I sort of settled on the idea of round about 5-10yrs ish, if I made it to 10yrs I'd be well chuffed :-) Can you imagine me being 40? I had written that off already, coz i didn't think I'd make it. So haven't even imagined what I'd do for my 40th. I am a random one!!!
So to think it all might come to an end in the next couple of years.....GUTTED!! but then I knew that might be the case already really. Its just this week I've been reminded of it.

Me and my boys are on our hols for a week. It always pisses it down when we go away!!!
See you when we get back.

Oh and hopefully I will back on here a bit more now.

Who was I kidding??

Not positive on Friday! who was I kidding to think otherwise? I should go to the hospital expecting crappy news.
Consultant basically said that I will always have my seizures whatever medication I take and the best I can hope for is mild seizures that are less frequent. Best case, 6 months without a seizure! which means ALWAYS having these shitty seizures and NEVER being able to drive again.
WHY? is this the case you may ask????
well, she explained that people with abnormalities on their brains e.g brain tumours rarely achieve complete or even adequate seizure control and if they do they are EXTREMELY lucky. So surprise surprise, I'm not one of the lucky ones!!
So I still have to keep trying all these drugs, but its just to try and get the one that does the 'best' job.
Spose I'm just gonna have to get used to living with epilepsy now. Friday-Tuesday this week very pissed off, cryey and upset. Think I'm over it now!!
It was my last little bit of hope taken away. Hope of not having seizures, hope of gaining confidence, hope of driving and getting back my independence again. A lot of you won't understand how devastating this news is, how gutted I am and what this means to me. Oh well, it's done, what can I do about it?? nothing.

I haven't been on my blog much coz everything has been a bit emotional and busy. I feel like I haven't got the time or the energy to catch up.
My new drugs.... I started off getting really bad headaches for the first 3-4 weeks, they have passed and I don't get them anymore. I now have really bad tiredness, which I've had for a couple of weeks. Its all happy days.

Been a bit crappy

Want to do an update, but am a bit bored of chatting about seizure's, headaches, tiredness and all that jazz. Things have been a bit up and down and all a bit hard to deal with over the last couple of weeks, so will do it another day

Seeing my consultant on Friday, so hopefully something positive will come of that.