Maria: Hi Julie, would you like to participate in a phone chat with me? As you know I do a community project each year and this year I am having ‘phone chats’ with people.
Julie: I sure would. I can talk for days about epilepsy. I also love to hear what others have to say about their own epilepsy stories. It helps me to realise that I am not a freak and that there are others just like me living with seizures. That we are all on the same planet. How exciting is that?
You know, I found out that many people with epilepsy seem to be quite spiritual or artistic, like Joan of Arc, Prince, and John Lennon. Many famous people have had epilepsy and that is really special to know as well.
Having said all of that, I really don’t like the feelings that I have with my epilepsy as I don’t seem to be able to completely relax. I am plagued by my own anxiety which drives my epilepsy, and then my epilepsy drives my anxiety. It is a never-ending vicious cycle and I feel quite yukky at times.
Maria: Can you describe your seizures?
Julie: I have three types of seizures: absence, tonic clonic, and focal with impaired awareness. Perhaps the most interesting ones are those when I do strange things like closing all the doors and curtains without realising what I am doing. On other days I may have about a six-second warning that something is about to happen and I have enough time and awareness to sit on the floor and make myself safe. When I try to speak my words come out all gobbledygook. From then on, I have no idea what happens but apparently, I seem to blackout and look confused for several minutes before getting up, grabbing my bag, purse, phone or whatever is close to me, and I rush away. I look like I am on a mission and I don’t respond to anyone. I suppose that lasts for several minutes and then I slowly recover but by then I could be crying. How embarrassing is that? I often wonder what people think of me when I do that. It is made even worse if I fall over. I know that when I have had a seizure in front of people it gives them a hell of a fright, it can’t be easy for them.
I look so normal and yet I can’t work as I have no seizure control. I can’t trust my brain not to behave and yet I really love meeting people. It is my anxiety that holds me back to enjoying the company of others and I know that if I am feeling stressed, then I will have more seizures. I just don’t want to be judged for having epilepsy and so I am really careful with the friends that I make.
Maria: What treatment options have you tried?
Julie: I have tried many different anti-epileptic medications with absolutely no success, I have even taken anti-depressants and medications for anxiety, but nothing has worked. I have been on the ketogenic diet, and lost a heap of weight, and yet the seizures still happen. I would like to try cbd but it is so expensive and I am not sure that it will work anyhow. I will ask my neurologist about his thoughts on the matter next time I see him.
Maria: Have you found any life style changes that have helped you?
Julie: Distraction works for me. Sleeping, watching TV, having the odd glass of wine, which are not good distractions, but I have found myself a voluntary job. It has given me a purpose to get out of bed in the morning and for me to put my make-up on and dress up. I have found my job fun and I am acknowledged for the work that I do.
Maria: Tell me more about your voluntary job?
Julie: I am a volunteer sorting out clothing and sewing. I love sewing. I am making dresses, skirts and trousers to give away in the Op shop. People like what I make and some have suggested that I am good enough to put my own label on them. How does, “Lovingly created for you” sound? The money goes straight back to people living with mental illness. I feel so good knowing that I am giving back to people who are probably a lot worse off than me.
Maria: Thank you for your time, Julie. I have seen many of your creations and they are really good. Perhaps there is a market there for you. Take care and continue having fun in your life.