Houston, we have clarity!

Well, after yesterday’s shenanigans, all is now well. I think it could be fair to say that when I wrote yesterday’s entry not only was I angry, exhausted from the seizures (now well and truly on the downward spiral, thank you Dr Flake and your “controlled” withdrawal – really NOT helping) and was annoyed that my life had been organized without my input.

This can be a fairly common occurrence as sometimes I am genuinely not in a fit state to make decisions for myself, but yesterday I felt I could.

I had organised my best friend to say over the night before the wedding so that Bert could go up to his brother’s house to stay (she is more than capable of looking after me) but no, Bert was having none of it. As stress is a BIG trigger for my seizures, I decided to calmly ask Bert why he was being so obstinate about the wedding plans.

It actually turns out he doesn’t want to be best man. What hurt was that he used my epilepsy as an excuse without asking me first. Most people with epilepsy will probably be able to identify with the fact that they don’t like being the centre of attention, which is inevitably unavoidable most of the time. It follows you everywhere. Job applications, driving licence applications, travel, you name it. It is like having a criminal record, you HAVE to declare it. It is especially hard when the seizures are not under control as leaving the house alone is like planning a mission to Mars. Most people worry if they have their keys, wallet and phone. Oh no, not for an epileptic! Do I have my wheelchair, a change of clothes, my midazolam (emergency medication for going into status epilepticus), extra diazepam for if I can feel simple partial seizures building. Oh the joys!!!

So, you can see why trying to maintain some semblance of normality is quite hard, especially when you can’t walk either! I just felt using MY epilepsy as an excuse not to be best man at Richard’s wedding was a little shallow. I told Bert very calmly that I felt he should have been more honest with his brother in the first place.

I was surprised that Bert was asked to be best man in fairness, as he is actually incredibly shy, dyslexic and the thought of him having to make a speech was making him feel sick with nerves already, even though I had offered to write it for him. It would have upset me having to watch him stutter and stumble through a few words but he was prepared to do it for his brother. Out of his 15 brothers and sisters, Richard is the one he is closest to.

I guess I was just angry that I wasn’t included in the decision. Now, don’t get me wrong, collectively, Bert and I have used my epilepsy as an excuse for getting out of a plethora of invites to candle parties, tupperware parties (seriously, they still have them!), bbq’s etc as we don’t drink and in fairness, given that 8pm is my bedtime at the moment due to the medication, I would have had to push myself into borderline 999 territory to actually attend these things.

One very good thing came out of it all. Bert has promised me he will never do it again without my permission. I had felt as though I was letting Richard down the way it was explained to me by Bert, but once he had calmed down and explained it properly to me I understood where he was coming from.

Yes, I may be medicated to the hilt, and on occasion, not even know what day of the sodding week it is, but I am still a 39 year old woman with 2 degrees and a member of Mensa and I do NOT want to be treated like an idiot. Even if I dribble after a fit!!

I think this has done our fledgeling marriage good. I have learned not to jump to conclusions, all I need to do is take tiny steps and there conclusions are, and Bert has learned to keep me in the proverbial loop. I am in this for the long haul with him, and I stick by my vows I made in church on a very sunny day last October. It will be till death us do part.

Sarah

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