my-epilepsy

staying sane with day to day life…having epilepsy

Changes…

Woops it has been nearly a month since my last post. That’s terrible! I’d like to say it’s because I haven’t had a seizure for a month but noooo, that’s not the case.

So let’s see, I was going to see my neuro because I was having a seizure every 5 days so I felt the new drugs just working. So what happens? It was two weeks until my appointment and did I have another seizure in that time? NO! Which is great of course but kind of negated the whole point of my going to see him. Maybe the drugs were starting to work? Part of me thought briefly, maybe I’ll just lie and tell him they are still happening frequently, but I just can’t do that. Bad karma! So I told him the whole situation and he decides that next time I have a seizure he will ween me off another of the three drugs that I take. Frisium. I am quite happy about that because that is the drug that makes me sooo tired. He looked over my history and decided it has never really provided many benefits (always nice to hear that you have wasted $100s of dollars on medication).

So that “next seizure” happened to be that afternoon! Once again another case of me jumping into a taxi for no apparent reason when on my way somewhere (I think this has happened about three times in the last few months). So I’m now midway through coming off my Frisium. Good news, it hasn’t had any bad effects. I had a seizure this morning, exactly two weeks since last one! Quite pleased if this pattern remains. One a fortnight is much better than two a week.

And this one was a nice normal one at home with Stephen, no taxis or sandpits or any other humans involved. Did I tell you about the child care sandpit one? That was one of the every five-day ones, and I only found out the details a week or two later when I met up with the man, another parent, involved again. It all sounds so dodgy, and sometimes it feels dodgy, like it was one of those times (when we were younger of course, never anymore) when we had one of those nights out drinking and we got so drunk that we know something or other happened – just can’t quite remember. Or, another analogy is when you wake up and you had a dream that you know was interesting in some way or another but you just can’t remember it!

But back to the seizure – when I saw the dad again at childcare  I asked him about the seizure and yes, in my opinion I had totally embarrassed myself. He said he looked over and there I was lying in the sandpit out in the playground. He didn’t think much of it at first (maybe playing a game with Lilly or something), but then realising I wasn’t and I was just staring into space, thought yes perhaps I was having a seizure (luckily his wife knew I had epilepsy so must have told him) so came over and asked me what I was doing. Apparently I said “needed to go down” (take that anyway you like – I nearly died when he told me that). Upon further investigation, I explained that I needed to get down to the level below to pick up something. And the poor guy tried very hard to explain that there were no lower levels, no escalators, lifts, nothing. This was the ground floor, the bottom floor. He continued, he said, until I finally understood and therefore I guess I must have come out of the seizure and wondered what on earth I was doing sprawled across the sandpit. But I didn’t remember any of this so why I was very keen to find the dad. He was very nice about it and told me there was nothing to be embarrassed about (but let’s swap places and see how he feels if that had been him having the seizure!!)

So there you go. Pretty funny in the end.  OK I’m tired, going to have a lie down. Will try to start writing more regularly again x

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