Firstly, let me say thank you to everyone who got in touch and said some really lovely things about my last post on Non Epileptic Seizures (which you can find here) - it's always nice to know that something I've written has been informative or helpful in some way.
I thought I'd give you a bit of an update and also share a few coping strategies that I've been finding helpful. I know that a couple of my readers have Non Epileptic Seizures, and I'm hoping that by the wonder of google, a few more might find this post helpful too.
I've been having seizures since mid-April now. At first they were sparse, then they disappeared pretty much completely, then they came back with destructive vengeance, averaging around 20-25 a day for a good 3 or 4 weeks. Right now, I seem to be sitting in the lull, the aftermath and I'm only really having small wobbles with very few seizures at all for the last week.
Now obviously, this is nothing but a good thing - it's nice to see some of the bruises start to fade and to feel a bit less exhausted all the time. It's nice to be able to go out and not be quite so worried that a loud noise is going to suddenly trigger a seizure (although sometimes it does). Essentially, it's nice to feel like I can socialise again.
One thing I have found though is that as the seizures have started to decrease, my general sadness and frustration as started to increase. I think part of this is down to working from home and being pretty isolated as a result, part of it is guilt from feeling like I've put so much on my best friend who's been looking after me most of the time, part of it is an adrenaline drop and part of it is that I just want life to go back to normal. Although I can socialise a lot more, I still have to be careful with how I use my time.
Part of it is also down to starting to understand (with the help of Jed and a lovely psychiatrist) the root causes of my seizure. Part of it is OCD and anxiety based (I have huge issues surrounding time), part of it is rooted in stuff from my childhood. Most of it though seems to stem from my time in the church. That's something I'm still not very comfortable talking about, and even writing and publicly acknowledging that is a painful thing to do. But it's important that I do.
So, what have I been doing to cope? I've been working from home, which has removed a lot of the stress of travelling. Sadly, it's been counter productive in terms of other mental health issues, and means that I tend to be quite teary during the day because I feel very alone. I'm hoping to get back in the office soon now that the worst of it seems to have died down some.
I've also been practicing Mindfulness meditation daily, which really helps a lot. There's a notable difference between the days when I meditate and the days when I don't (namely, how likely I am to have a seizure). I also try to practice yoga daily and do bits and bobs of hula hooping and poi.
I try to get out and see people, although I've been asking most of those people to come see me in the town where I live, instead of going into central London to do them. I've felt quite guilty about this, as I live a fair way out, but I also know that it's been the most important thing I could have done, and most people don't mind travelling if you explain it to them properly.
I've been lucky enough to find other people with the same condition and talk to them about it, although I've tried to make sure that I stick with the pro-active positive people and stay away from the scary "Your life is oveerrrrrr" facebook groups. Positivity and pro-activeness are crucial.
I've been learning that it's ok to be pissed off and cry sometimes, but it's important not to wallow. At the moment, this is one of the thing that I find hardest. I feel so frustrated and trapped that I end up crying when I don't want to and then don't know how to stop. I try hard to just communicate well.
I treated myself to a really good pair of headphones (these ones) that I can throw on if noise or outside distractions get too much. They block out quite a lot of outside noise and have stopped several seizures dead in their tracks. Definitely recommend them.
So that's sort of where things have got to. I've been referred on to yet another psychiatrist who is a bit better equipped to deal with transition issues and I'm trying to muddle my way through. Mainly, I'm trying to find ways to not lose my mind whilst working at home, so if you have any suggestions, I'll welcome them with open, loving arms.