I just can't explain how fucking horrible they are

.....or what it is like to have them.
My seizure's have been really fucking horrible lately. I thought they were getting better for a bit but 'OH NO' they were just hiding, just tricking me.
I will carry on with this post later. But I just don't even wanna talk about it all at the moment.

P.s........

Not that I feel that I should or have to explain myself, because that is not what my blog is for or about but.....

My last post was not a suicidal, put me on anti depressants cry for help.
I know and appreciate that I have my wonderful and gorgeous boys in my life, which I love so so much. I also know I am so lucky to have all my other family to support and love me, who I also love very much.
So don't say "she doesn't know how lucky she is" or what ever it is people say!! Because 'I DO' know how lucky I am and 'I DO' know that their are a lot of people out there who don't have any love in their lives. People who don't have anybody to share the good or the bad things in their lives and 'I DO'
So don't call the men in white coats, with all the pills just yet!

I am just so fucked off that I am having to live with this shit day in day out with no escape.

Feeling shit all round

Everything is a big pile of shit. Med's, Seizure's, having no friends, having no where to take Jamie, to help him/me make new friends, having nothing to look forward to, everyone knowing i'm a tumour twat, having seizures in front of people I know, people I don't know, side effects, tiredness, tiredness and more tiredness bla bla yack yack.....It's just all a big pile of poo.
The end

Feeling a bit better

Feeling a bit better on my drugs. Still really fucking tired, Monday was my worse day for tiredness I was proper hanging!! Fell asleep on the sofa. Jamie was good and let mummy have 'a little rest'.
My seizures seem to be easing a bit, now I've said that I will have 6 major one's in a row this week now. But I've started to have mild one's again, which can only be a good sign.
Going up another dose (pm) this week, which shouldn't affect my side effects as the pm one never does.
Just a little meds update.

Wish I felt lucky at the moment

I was thinking today, it's been nearly a year and a half since my diagnosis and I don't seem to have moved on much or come very far!!
Maybe in the future when things are worse for me eg when the physical or mental crap is happening to me, being in hospital having treatment etc I will look back and think 'God I had it so much easier back then, even good, all I had to deal with was seizures!!
In the future when I am much worse, will I look back and think 'I could do so much then. I could use my right arm to type and write. I could walk unaided. Why did I bitch and moan? I was so lucky.
It's just I don't feel very lucky! maybe I should.
Maybe I should feel lucky.....lucky just to be here.
Been thinking a lot lately about dying and not being here. I think when your ill and you know it's gonna get ya, you go through stages of thinking about not being here. Well I do anyway. Then it gets me thinking about all that crap again.

I just wish I felt lucky at the moment, as I have a lot to feel lucky about.

Had a fantastic happy day with my family which does make me feel lucky today :-)

Me at the moment

Given up on the wine for now! might try something else. It just made me feel like shit and I didn't really enjoy drinking it anyway. Didn't change my seizures tho.

Sticking with Topiramate for now. It seems like my body just takes longer to process the drug!
I started off having really intense side effects and with each dose I went up I acquired new side effects. But slowly over time the side effects decreased and they then eventually disappeared.
I am still going up doses and still getting different side effects each time I increase but I now wait for the side effect to go before I go up another dose!
At the moment its TIREDNESS!!!
Topiramate doesn't seem to be doing its job of controlling my seizures! but I am still on a low dose. But hopefully it should do something to them once I get on a decent dose and all this heart ache won't be for no reason.

I am being a bit of a sad cryey twat at the moment. Its just all this seizure crap is really getting me down and knocking my confidence even more than its knocked already! and its just a constant reminder that I have an alien inside my head.
I just can't get passed this at the moment! its because my seizures have changed. I could of had mild one's and a lot of people wouldn't of even noticed. But now I have these horrible mumbly ones all the time, that just shout 'hey look at me'. I beg my brain not to have these horrible fuckers when I go to see people or do something new/on my own . But it has them anyway, just to spite me!! or just because it wants to, or maybe coz it doesn't give a flying fuck.
Anyway that's me at the moment..... well the short and not so depressing version

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.