So….. it’s been a difficult week. It’s been another difficult week I suppose, but this one filled up with emotions and thinking. I was supposed to make it more of a “proper” blog full of photos of my recent bakes and cooking skills but …. I forgot to take a photo of the cake I baked and then I had a major setback.
I suppose my life has changed completely since 30th December 2017. It was difficult to manage with Graham being in the hospital and juggling the work, home kids and looking after him, the everyday trips to hospital. Even not for a moment then I thought it would be cancer and he would start epileptic fits. Even if the cancer went through my mind, I would have never ever ever in million and trillion years expect the epilepsy. I thought life was difficult in December/January…. but it became worse.
I can’t explain the feeling I had. I was petrified of seizures. I can cope with cancer, chemo, side effects and moods…. but seizures, their unpredictability scared me. I desperately searched for help which actually turned out more difficult that I expected. Mental health care isn’t easy accessible. Maybe in different counties… I don’t know. I have received help now but I actually has never been formally diagnosed with anything. I felt down and alone and petrified. Life lost it’s meaning. There was no light at the end of the tunnel. I felt like running away, leaving it all. I hated every moment of what was happening. It was a dark place. Everything seemed confusing, out of control. You can’t just “get on with it”, you can’t just search for tips online or call Samaritans. There is no energy to carry on with houseworks, cooking seems a chore. Having bath seems a chore. Dealing with children is actually an impossible task. But I did carry on going to work as it was my only escape from home. At work I could be myself, not a carer, even working as a nurse. I was free from the constant, CONSTANT worry about my husband.
When we had the 6 weeks seizure free period I started to believe things were improving. I let myself to fell into the false sense of security to believe it. I felt happier… and then Graham had another two seizures. He had one first, in his sleep as usually and I let him sleep… as firstly I was worried he would be tired but also I thought I’d see if he remembers what happened in the morning. But he went to sleep after his seizure and had another one about 1.5hours later, exactly the minute I decided to lie down and switch off the light and get back to sleep. So I had no sleep that night, nor I had any sleep the night after as any movement he made woke me up. Neither I had any sleep a night before as I was working. So after 3 nights no sleep I wasn’t a real human being. But things got gradually worse. Things got worse even when I went to work and thought I’d relax. I didn’t. My anxiety grew bigger and bigger, I had a feeling something horrible is about to happen to my kids, to me to the world. I don’t know. Just a horrible feeling of being stressed all the time, worried all the time at the back of my head about everything.
I had a counselling session that week. I thought it wasn’t particularly helpful at first, but it drew my attention to something. It’s a complicated issue reaching back to my childhood… but I realised after the session couple of things. Firstly generally I realised that the voice in my head is my mum. All the doubts I ever had and all the times I felt unsettled in my life was my mum and my upbringing. But that’s a subject for a completely another story. The other thing I realised was the fear. I had that fear in my and maybe everybody does to some extend, a fear of scary things. A fear of the inhuman, cruel, bad things. Things out of control. And I realised whenever I was scared of something I used to run away from it. I don’t usually conquer my fears. And then I realised that’s the exactly the same fear I was feeling. But wait a minute, I was scared of driving and I do drive now…so it is possible to overcome your fears. I talked to myself to calm down. I tried to reason. I stop denying the fear and accepted it. I tried to accept the situation. I tried to accept it is horrible, it is happening, I am afraid, it is difficult and it will be difficult for a while yet.
This fear – it is my nemesis.
When I tried to tame the fear it seemed smaller. I still haven’t yet slept a night in my house to see it in practice, but I calmed down and lost the overall feeling of anxiety. I realised that life do goes on. Yes, seizures happen and yes they are at the moment the central focus of our lives, but life do go on. There are things happening between the seizures, they are children to look after and watch growing up. There are things which still make us happy.
And mostly I do have to work out a strategy to deal with what’s happening. I need a plan in place. I need to prepare myself if seizure happen that’s it, I won’t sleep the night, I’ll become a nurse on duty. I prepared myself something I like doing, I decided I’d update this blog if need to, maybe do colouring, watch a film.. I don’t know. I’ll occupy myself not to think but be able to treat Graham as my patient. This strategy is yet to be put into practice but…. it’s something isn’t it. It’s something more constructive than just being afraid.
I also signed up for a epilepsy awareness course, and tried to get some help from Bucks Carers. I don’t know if it’s all going to work. I don’t know how it is all going to work. But let’s give it a go.