It's stressful, you know. At the moment, my seizure frequency is higher than it has been at any point since...well, since my diagnosis about five years ago. I had two seizures yesterday while visiting W's parents, and actually considered it a small victory that I managed to get safely home again on the bus without further incident.
Today, I should have taken M to a parent and toddler group and then a breastfeeding group this afternoon, but due to a poor night - an occasional fact of life if you have small children - both W and I were worried about me leaving the house without him. And then, about half an hour before we were all due to go out as a family, I got that funny feeling I get sometimes, and had to crawl upstairs and drag myself onto the bed. I felt my arms and legs going as I entered the bedroom. When I came back to normal I checked my watch and only about five or ten minutes had passed, but I can only remember a minute or so and then I have a blank. When I'm alone like that and there are no events for me to mark time by, I might as well have blacked out for all I can remember. I just get to a point where I am suddenly aware that I am lying in a rather uncomfortable heap on the bed, or on the floor, and I know how and why I got that way, but still have the disorienting sensation of "coming to" which makes me wonder more and more: "did I pass out this time? Will I pass out next time?"
Needless to say, I haven't left the house at all today. I can feel myself getting more and more hermit like, and the stress is telling on W. He does a hero's job putting up with me and my seizures, sometimes listening to him and lying down when instructed, sometimes loopy enough to insist firmly that I am perfectly okay right up until the point where I keel over. But it is relentless for him, and the more seizures that I have, the greater that burden of stress I put on him. I can't go with him to the shops, but he's worried to leave me behind. I can't just sit around the house all the time (I go stir crazy, and that makes me worse), but going out is fraught with worries of its own. Even when I am at toddler groups and O and M are able to be watched by other people, during the few hours a week that W doesn't have to worry about me, well, of course he does! You can't just switch that off. He doesn't get a holiday. And okay, neither do I. I always have to live with the fact that I could have a seizure at more or less any point. But while I'm actually having a fit, I'm too out of it to really care. It's W who has to pick up the pieces, and watch both me and our children while it happens. And we both have to then explain to O why we were unable to go and meet up with Grandpa, or why we aren't going to playgroup, and he's still young enough to not understand. The other day he cried out "but I'm missing all the fun!" and it broke my heart. He does miss out sometimes, and it just isn't fair.
How long will I be like this? How long will it take someone to find the right combination of drugs to keep this at bay? When will I get back to "normal", if it even exists?
Thursday, 7 July 2011
Tuesday, 5 July 2011
The New Normal
So. It would seem that, for the time being at least, my seizures are going to happen almost every day. I have actually had two seizures today. One first thing this morning, and another this afternoon. Unfortunately I didn't get to see the epilepsy nurse today as she was ill, but I should be getting another appointment in the post. Well, it fits the pattern, I guess.
Well, that's a little unfair. I phoned my GP today on the advice of Epilepsy Action, and to my amazement, he was able to book me an appointment at my local hospital for September. You know, the same hospital which told me that there were "no clinics". And he was apologetic for it being so far off. He looked for sooner appointments at hospitals further afield, but alas, the wait seems to be the same wherever I go. To be honest, I was actually quite impressed with how soon I'll be seen. The deferral letters I had been getting had been putting me off for six months at a time. I feel a bit of a tit now for not having kicked up a stink earlier.
I have also been promised a prescription for some new Anti Epileptic Drugs to try and reduce the seizures, with an appointment in a couple of weeks to see how I'm getting along. I may defer starting those until after my operation though. I don't think that I should be introducing new active chemicals to my bloodstream if I'm about to go under the knife.
All in all, things are looking...different. I wouldn't go so far as to say they're looking "up", but at least they aren't worse. Time will tell on whether these new meds are going to do anything, but until then (or if they don't), things are quite stressful. Planning to accommodate an all but expected seizure every day is very different to having contingencies set up just in case. I can feel myself already slipping back into the old fear I had when I was waiting for my diagnosis, when I spent an entire summer more or less indoors because I was scared to go out. That summer I developed an almost unhealthy addiction to a particular online multiplayer game, and I really don't want that to happen again (even though its sequel is now perfectly timing its sort-of-imminent release).
See, I'm still cheerful really. I can always tell how badly something is affecting me long-term by how I feel after talking/writing about it for ten to twenty minutes. If I'm still in a good mood by the time I finish, then the chances are that it's a passing low. It's not the end of the world unless I stop joking and laughing.
Actually, I think it's one of those few times where my utterly catastrophic short term memory comes in handy. I live so much in the present tense that it's hard for me to focus on the crap things that are happening if something else distracts me. The minute I spot an interesting book, or fire up the web browser or start chatting to someone, off my mind goes, flitting around and forgetting what it was I was so mopey about. I always remember again in the end, but at least it means I'm away with the fairies enough to not get permanently down. (The major downside to this is that I normally forget to do pretty much everything that isn't right in front of me. I have to keep my medication out on the worktop or I forget to take it.)
Well, that's a little unfair. I phoned my GP today on the advice of Epilepsy Action, and to my amazement, he was able to book me an appointment at my local hospital for September. You know, the same hospital which told me that there were "no clinics". And he was apologetic for it being so far off. He looked for sooner appointments at hospitals further afield, but alas, the wait seems to be the same wherever I go. To be honest, I was actually quite impressed with how soon I'll be seen. The deferral letters I had been getting had been putting me off for six months at a time. I feel a bit of a tit now for not having kicked up a stink earlier.
I have also been promised a prescription for some new Anti Epileptic Drugs to try and reduce the seizures, with an appointment in a couple of weeks to see how I'm getting along. I may defer starting those until after my operation though. I don't think that I should be introducing new active chemicals to my bloodstream if I'm about to go under the knife.
All in all, things are looking...different. I wouldn't go so far as to say they're looking "up", but at least they aren't worse. Time will tell on whether these new meds are going to do anything, but until then (or if they don't), things are quite stressful. Planning to accommodate an all but expected seizure every day is very different to having contingencies set up just in case. I can feel myself already slipping back into the old fear I had when I was waiting for my diagnosis, when I spent an entire summer more or less indoors because I was scared to go out. That summer I developed an almost unhealthy addiction to a particular online multiplayer game, and I really don't want that to happen again (even though its sequel is now perfectly timing its sort-of-imminent release).
See, I'm still cheerful really. I can always tell how badly something is affecting me long-term by how I feel after talking/writing about it for ten to twenty minutes. If I'm still in a good mood by the time I finish, then the chances are that it's a passing low. It's not the end of the world unless I stop joking and laughing.
Actually, I think it's one of those few times where my utterly catastrophic short term memory comes in handy. I live so much in the present tense that it's hard for me to focus on the crap things that are happening if something else distracts me. The minute I spot an interesting book, or fire up the web browser or start chatting to someone, off my mind goes, flitting around and forgetting what it was I was so mopey about. I always remember again in the end, but at least it means I'm away with the fairies enough to not get permanently down. (The major downside to this is that I normally forget to do pretty much everything that isn't right in front of me. I have to keep my medication out on the worktop or I forget to take it.)
Sunday, 3 July 2011
Change of Pace
Okay, so I'm having my gall bladder removed next Saturday. I knew it was coming, but only actually got my appointment on...Tuesday, Wednesday? Maybe as early as Monday? Either way it was hardly the four weeks' notice I was promised. Still, I've come to expect that sort of thing, and at least it gets it out of the way.
The fact that I have epilepsy, for once, doesn't add a major complication to things. In fact, I actually had a seizure in the pre-assessment unit waiting room on Friday, and while it was a pain, because it meant I got bumped to the back of the queue and we ended up being there for about four hours (no exaggeration), the sister there was remarkably relaxed about it - she said her son had epilepsy - and just let me get on with it, saying that since we dealt with it all the time, if W said I was okay, she believed him, and to let her know if we needed anything.
The seizure itself wasn't that bad, either, although it does seem to be a sign that my seizure frequency has increased somewhat dramatically. I've gone from a few per month to having them almost every day, which makes a massive difference. There's a lot of ground between thinking "am I going to have a seizure this week I wonder" and "will today be the day I don't have a seizure this week". With the former, you can plan to do things, and if a seizure happen you work around it. Now, we're working on the assumption that I will probably have a seizure almost every day, and W is constantly watching me, looking for erratic behaviour that could be a sign one is imminent. He almost always knows I'm going to have a seizure before I do, simply because I don't pick up on the fact that I'm feeling weird until I've had the seizure and start feeling better again. It puts a lot of pressure on him, pressure which is only going to increase in a week when I will be hampered by needing to recover from keyhole abdominal surgery.
I keep telling myself that once it's done it's done, but it never quite seems to happen that way. There's always another hurdle round the corner that I have to jump. Ack, and now I'm feeling sorry for myself. Things aren't that bad, really. The good in my life definitely evens out the bad. It's just that every now and then a cluster of bad comes along and it's a little harder to focus on the good points. I'm also really not looking forward to the operation. They've said to expect an overnight stay, as I'll quite probably have a seizure when I come round from the anaesthetic (I'm 99% sure this happened when I had my wisdom teeth out in January), so they'll want to keep an eye on me. But this will be the first night I'll have been away from M, and she's been so clingy lately that I'm as worried about how she'll be as I am about having a minor organ removed. It doesn't help that I have a tendency towards unnecessary paranoia, really.
Still. This time next week that part will be over. I should be home again (admittedly, I'll be in a lot of pain, but still), and I can focus on getting better, and readying myself for whatever is coming next.
The fact that I have epilepsy, for once, doesn't add a major complication to things. In fact, I actually had a seizure in the pre-assessment unit waiting room on Friday, and while it was a pain, because it meant I got bumped to the back of the queue and we ended up being there for about four hours (no exaggeration), the sister there was remarkably relaxed about it - she said her son had epilepsy - and just let me get on with it, saying that since we dealt with it all the time, if W said I was okay, she believed him, and to let her know if we needed anything.
The seizure itself wasn't that bad, either, although it does seem to be a sign that my seizure frequency has increased somewhat dramatically. I've gone from a few per month to having them almost every day, which makes a massive difference. There's a lot of ground between thinking "am I going to have a seizure this week I wonder" and "will today be the day I don't have a seizure this week". With the former, you can plan to do things, and if a seizure happen you work around it. Now, we're working on the assumption that I will probably have a seizure almost every day, and W is constantly watching me, looking for erratic behaviour that could be a sign one is imminent. He almost always knows I'm going to have a seizure before I do, simply because I don't pick up on the fact that I'm feeling weird until I've had the seizure and start feeling better again. It puts a lot of pressure on him, pressure which is only going to increase in a week when I will be hampered by needing to recover from keyhole abdominal surgery.
I keep telling myself that once it's done it's done, but it never quite seems to happen that way. There's always another hurdle round the corner that I have to jump. Ack, and now I'm feeling sorry for myself. Things aren't that bad, really. The good in my life definitely evens out the bad. It's just that every now and then a cluster of bad comes along and it's a little harder to focus on the good points. I'm also really not looking forward to the operation. They've said to expect an overnight stay, as I'll quite probably have a seizure when I come round from the anaesthetic (I'm 99% sure this happened when I had my wisdom teeth out in January), so they'll want to keep an eye on me. But this will be the first night I'll have been away from M, and she's been so clingy lately that I'm as worried about how she'll be as I am about having a minor organ removed. It doesn't help that I have a tendency towards unnecessary paranoia, really.
Still. This time next week that part will be over. I should be home again (admittedly, I'll be in a lot of pain, but still), and I can focus on getting better, and readying myself for whatever is coming next.
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