Well, I am officially not taking Clonazepam any more. On my GP's advice, I have weaned myself off, and tomorrow (Monday) I shall take the remaining tablets back to the pharmacy.
It was a nice try, I suppose, and it could have helped, so it was worthwhile. It's still a little frustrating to be back to square one, especially after all the trouble I went through while taking them (including having a seizure out in public on my own which could have ended rather badly as it happened about twenty seconds after I crossed a busy road), but, with a little hindsight, I know that I run the same risks when I start taking any new medication.
There isn't a cure for epilepsy, and there possibly never will be. There certainly won't be a cure for my kind of epilepsy in my lifetime. All I can really do is to try and stay positive, and not get so worked up on the negative stuff, as I have been doing lately.
Still, it's all very well me saying that. I'm human, I expect to write ranty posts in future expressing my rage and frustration at the world. I'd be a bit creepy if I didn't. I also believe that sometimes it's only by getting angy and taking action that we get anywhere. It wasn't until I got fed up with being fobbed off by the hospital delaying my neurologists appointments indefinitely that I got my appointment in September. It wasn't until I get cross with the Epilepsy Nurse's team that I rang up to work out what was going on and realised I'd been mistakenly dropped off the list. Sometimes, being calm and taking things in your stride is the wrong thing to do.
Still. The important thing is to strike the right balance. I'm not going to let my epilepsy bully me into sitting at home all day, afraid to go out, as I have been these last few weeks. Nor am I going to just say "to hell with it" and start running risks, because that would have serious repercussions for myself and my family. I do think i need to take another look at what I do with my time though. Taking these new drugs and seeing how much worse my life could be (how it was before I started the Keppra, essentially), has made me want to be more productive with my time. I've been wasting a lot of it recently just moping, and that isn't doing anyone any good.
Sunday, 31 July 2011
Thursday, 28 July 2011
Late Nights
It's one o' clock in the morning. (Thereabouts.) Normally, by this point, I would be asleep.
However, seeing as I'm not, I thought it a good opportunity to continue the musings of earlier, to the relaxing sound of Brahms' Lullaby on repeat (courtesy of YouTube). M won't go to sleep, you see. It's a modern parenting thing, honest...
Anyway. Yes, musing. I think the chief difficulty is that there is so much that I need/want/crave to be foing outside the house at the moment, and 95% of it is on hold because I am still having seizures daily. The one I had earlier involved a lot of what, were I religious, could be described as speaking in tongues. I apparently told W that I itched inside, and wanted to run and run. I probably also told him a great many other ridiculous things, but the running part sticks in my mind.
I had planned to run in the Race for Life this year, until the Gall Bladder episode put an end to that. (Still, next year, eh?) I planned to do a lot of outdoor activities, including buggy walks, taking O and M to the park, walks along the river, that sort of thing. Instead, I am sat here most days, inside a fairly small house, with everywhere and yet nowhere to go.
Leaving the house is like an expedition to the Sinai sometimes. Have I got my bag, yes. Coat? Phone? Am I feeling okay? Keys? Epilepsy card? Am I sure I'm feeling okay? Do I need an umbrella? Have I got the changing bag for O/M if I am taking them? Am I really really sure I'm okay? And I'll only be going straight to that one shop and then home again, right? And I'll have my phone on and in my pocket, and will answer it this time, right? Right? Okay, then out the door, no stress, no pressure, just going for a quick jaunt to one shop and one shop only and then straight home again before I fall down and start telling people the sky is green and pink at the same time. (No, seriously, if you are nuts enough to look at the sky on a clear day for long enough, this optical illusion actually happens. Blame my sixteen-year-old self for being boring and not kissing boys.)
The whole palaver does make me reluctant to go out though. It gets to the point where it's just so much hassle, even for things which are relatively run of the mill, such as taking O and M to parent and toddler groups. Some days I just can't muster the enthusiasm. It's just another day, just another group, and tomorrow I'll be just as incapable of doing things other people take for granted, like being spontaneous.
I bought myself some cheap earrings today, just because I was walking past the shop and there was a sale. I honestly can't remember the last time I was out in town and I just decided to go and buy something like that, and W wasn't there with me, being all manly and not understanding window-shopping at all. It was just a few precious minutes, but it was for me, and it was spontaneous.
I miss that the most, I think.
However, seeing as I'm not, I thought it a good opportunity to continue the musings of earlier, to the relaxing sound of Brahms' Lullaby on repeat (courtesy of YouTube). M won't go to sleep, you see. It's a modern parenting thing, honest...
Anyway. Yes, musing. I think the chief difficulty is that there is so much that I need/want/crave to be foing outside the house at the moment, and 95% of it is on hold because I am still having seizures daily. The one I had earlier involved a lot of what, were I religious, could be described as speaking in tongues. I apparently told W that I itched inside, and wanted to run and run. I probably also told him a great many other ridiculous things, but the running part sticks in my mind.
I had planned to run in the Race for Life this year, until the Gall Bladder episode put an end to that. (Still, next year, eh?) I planned to do a lot of outdoor activities, including buggy walks, taking O and M to the park, walks along the river, that sort of thing. Instead, I am sat here most days, inside a fairly small house, with everywhere and yet nowhere to go.
Leaving the house is like an expedition to the Sinai sometimes. Have I got my bag, yes. Coat? Phone? Am I feeling okay? Keys? Epilepsy card? Am I sure I'm feeling okay? Do I need an umbrella? Have I got the changing bag for O/M if I am taking them? Am I really really sure I'm okay? And I'll only be going straight to that one shop and then home again, right? And I'll have my phone on and in my pocket, and will answer it this time, right? Right? Okay, then out the door, no stress, no pressure, just going for a quick jaunt to one shop and one shop only and then straight home again before I fall down and start telling people the sky is green and pink at the same time. (No, seriously, if you are nuts enough to look at the sky on a clear day for long enough, this optical illusion actually happens. Blame my sixteen-year-old self for being boring and not kissing boys.)
The whole palaver does make me reluctant to go out though. It gets to the point where it's just so much hassle, even for things which are relatively run of the mill, such as taking O and M to parent and toddler groups. Some days I just can't muster the enthusiasm. It's just another day, just another group, and tomorrow I'll be just as incapable of doing things other people take for granted, like being spontaneous.
I bought myself some cheap earrings today, just because I was walking past the shop and there was a sale. I honestly can't remember the last time I was out in town and I just decided to go and buy something like that, and W wasn't there with me, being all manly and not understanding window-shopping at all. It was just a few precious minutes, but it was for me, and it was spontaneous.
I miss that the most, I think.
Wednesday, 27 July 2011
Musing
Well, I'm going to stop taking the Clonazepam. Goodbye short, annoying venture into new-drugs territory. Hopefully when I get to see the Epilepsy Nurse on the 9th August she'll be able to give me some more advice.
I guess it's frustrating me quite a lot, because I did all the right things, and it still went wrong. I have a problem with my high seizure frequency, I pulled out all the stops trying to get a solution - and I got given one! - but it didn't work, and now, here I am, back to square one.
Still, on the bright side, at least it's one more thing I can jot down on the list of "things not to give me if you want me to be well". Surely one of the epilepsy drugs out there has got to work, right? And by trying them all, I can only be closer to finding the one that does? Please?
I guess it's frustrating me quite a lot, because I did all the right things, and it still went wrong. I have a problem with my high seizure frequency, I pulled out all the stops trying to get a solution - and I got given one! - but it didn't work, and now, here I am, back to square one.
Still, on the bright side, at least it's one more thing I can jot down on the list of "things not to give me if you want me to be well". Surely one of the epilepsy drugs out there has got to work, right? And by trying them all, I can only be closer to finding the one that does? Please?
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