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.
Sunday 30 May 2010
Friday 28 May 2010
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.
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.
Tuesday 11 May 2010
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!!
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????
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????
Saturday 1 May 2010
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'
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'
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