I’m pretty certain I’ve started a blog like this before but… in 1992 I found myself on the bathroom floor, very confused and wondering what on earth had happened. Soon after I was diagnosed with epilepsy. 26 years later and I feel like I’m being diagnosed for the first time again.
In those 26 years I don’t really feel that the epilepsy has affected my life. Yes I’ve never been able to drive, but I grew up knowing that was likely to be the case. I have to take medication every day. I don’t go clubbing, but I’ve always been more of a pint in a pub girl anyway, I’ve never been to a gig and there are certain parts of films that I’ve never seen. If I have seizure I normally have to sleep it off, and quite often there will be an injury BUT it has never affected my everyday life.
There have been many changes in my condition over the years, and we’ve had quite a journey including a wonderful spell where it wasn’t really an issue at all. I wasn’t ready for this change and it has taken me a long to accept what is going on, and that it may be more than a blip.
My epilepsy is now affecting my everyday in ways that are probably not visible to anyone else, but to me they are very real. Whether it is the physical twitching, confusion, absences or memory loss. There was a point where the frustration was causing me so much anxiety that I was… well… let’s just leave it with the fact that it causing great anxiety.
Over the last couple of weeks I have started to accept my disability, and started to take some practical steps to aid me in the day to day. Whether that be something to hold when I know the frustration and anxiety levels may be high; seeking the necessary help and guidance from professionals; writing down things as soon as I think of them; listing what needs to be done; resting when I need to rest; not getting annoyed with myself when things don’t quite go to plan.
It’s a work in progress, and I think this is the very beginning of the journey, but a few small steps have been taken and those small steps have made a difference already, I just need to make sure I don’t start trying to stride!