My wife was with me when I got my diagnosis. From that moment, I felt things change between us.
We went from being equals to me feeling that she was my carer. She’d have my pills ready for me to take at exactly the same times each day. She cancelled a day trip we’d been due to go on, in case it was too much for me. If I wanted to go upstairs, she’d follow me into the hall, in case I fell down the stairs.
It was all too much. It made me feel that I was no longer a capable human being and I resented the fact that Doris felt she had to look after me. As far as I’m concerned, it should be me looking after her.
Whenever I tried to talk to her about how I was feeling, she would change the subject and pretend everything was fine.
Our marriage was quickly heading downhill. And so was my confidence.
Looking back, I can see that the whole epilepsy thing was as new to Doris as it was to me. She was just doing what she thought was best to help.
But her actions made me feel like I was less of a man, and not capable of looking after myself.
One night, she broke down in tears and told me how worried she was about me. We finally started talking properly about my epilepsy.
We made a real plan about what would be the worst that could happen if I had a seizure, and what realistic precautions could be put in place. We realised that, as long as I was sensible, we could still enjoy doing most things we always had. But we had to employ a window cleaner, as I could no longer climb ladders to do the windows – no complaints from me!
I told Doris that she needed to trust me to remember to take my medicine. Taking matters into my own hands made me feel more confident.
We set ourselves a goal. Now, we make sure that we go out for a meal at least once a month, just the two of us. We turn off our phones and talk honestly about how we are doing and how we are feeling. It makes me feel more valued by her and I hope she feels the same.