Thursday, 7 July 2011

Cracks in the Walls

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?

1 comment:

  1. Good luck with finding the right combo of meds. I sort of understand. I'm screwed without my parkinsons meds. Life changing when they come good. And they will.