Hi, I’m Jocelyn. Got diagnosed with a brain tumour just over 6 years ago and had no seizures after the ones that got me diagnosed until about 3 years ago. The seizures have only got worse, even after surgery (to remove part of the tumour, not stop the seizures, but generally that type of surgery tends to have a neutral or positive effect on seizures). The worse they get, the more meds they put me on, which saps me of all my energy and still leaves me with seizures that come on with no warning – not terribly often, but not good in public, alone! Plus now I’ve developed serious side effects that I’m trying to figure out how to manage with very little guidance. I’m struggling to keep my job and have almost given up on the things I enjoy, or used to enjoy, in my attempt to keep working. My consultants are wonderful, but there isn’t the bandwidth for support staff (who are also usually wonderful) to keep track of all the changes in my situation and answer all my questions. I feel like I’m just about out of resources and out of strength to manage it all, when along comes this course. (I’m already half a week behind in that, too!) I hope I can find some sensible way forward. I have so much going for me – an amazing husband, supportive colleagues and boss, far fewer seizures than so many of you suffer – but I still am starting to feel like it’s all too much to cope with, even with all that.
