Beginning of being out of control

I was thinking about the seizures I’ve been having. The most prominent one was when the seizures wouldn’t stop.

There was one that lasted about 40 minutes - felt like a long time; which was really scary. I did call the neurologist and first of all he didn’t seem to grasp the concept of the fact that I was having a seizure and he just told me to just get on with it and didn’t really seem to ask the right questions. And then he went the other way and said go to the A&E.

I was slurring my words; he wasn’t believing what I was saying. My feelings were that he thought I was putting it on and I didn’t feel that I was being believed. It was like I was drunk and then suddenly he realized this was something serious.

By that stage I was really pissed off and went into the mode of “fuck you; you don’t believe me; I’ll just do it on my own; stubborn; what’s the point of a and e if he’s not going to believe me? and I’ll just ride this out”. In hindsight this was a silly thing to do.

So I’m thinking I’ve got .. there’s something about that - about not being believed, or not good enough, or I’m not important enough. Just the only person I can rely on is me. That’s effectively what I did but the seizure went on for 40 minutes but the whole process went for ages.

I had to ring Julian and get him to come home and we then spoke to Rosenthal, the oncologist, and he wouldn’t do anything because it wasn’t his area of expertise. Again thinking - although Julian came home and it was better - still that feeling of not being heard and just need to do it on my own because no one else gives a shit.

It was quite scary thinking that way, as well that it’s very familiar. Always just getting on with things and putting them behind me and not trying .. just moving on because it’s too hard to do anything else.

So the next time I had a seizure we had a similar thing but on a Sunday. But we decided to go into the emergency dept and that itself was a bad experience because I couldn’t talk well. The more I had a seizure the worse… I couldn’t speak a lot and had to rely on Julian to speak on my behalf and that was very, very confronting because I’ve always looked after myself and didn’t think Julian would be able to represent me properly. I thought he would sit back and do what they say and I kind of … there was a real panic if I didn’t speak out. I was still having a seizure and they were saying I wasn’t but I knew I was. There was a despair of what was going to happen. It was a pivotal moment.

I kept on looking at him and telling him to do something about it and I didn’t trust he was going to do anything even though he was doing everything right. He was actually very good and he kept asking and they were so busy and they fast-tracked me. He couldn’t have done anything different. They couldn’t have gone any faster but it was a really scary, fearful.

I can’t rely on myself because I can’t speak. What’s going to happen cause I can’t speak? But what was good out of that was Jules did everything he could possibly do and in a fairly calming moment he was calming throughout. I don’t know how he did it in all this controversy. He didn’t know I was freaking out.

Julian in the past has always taken a back seat because I’m so controlling but he couldn’t do that and he was able to do what I needed. He kept going on and really supported me and really it was a pivotal moment for me knowing that I’m not alone.

He believed me as well. Everyone else was saying you weren’t but he was 100% listening to what I had to say when everyone else was being dismissive. Then that was when I went into hospital when it all started with the seizures. I think I went in and was discharged the next day and that’s when I went to Professor Kaye and that’s the beginning of the whole process.

And it feels like there is so much to say but it still feels like I’m still there going through it. I think that probably says it. That feels really important. Really I thought.

Having to rely on someone that’s my first time. I couldn’t take control. It’s a major big thing; someone having to look after me. I have never, ever, ever, ever had to do that. That’s it.