Maria: Hello Charlie, thank you for taking part in my phone chat project. Every person with epilepsy has a special story. How shall we start yours?
Charlie: I guess that having epilepsy isn’t just about me. It impacts on my entire family because of the limitations epilepsy puts on my life. I am not allowed to drive a car and so I can’t just pop out to do the shopping or pick up the kids after school. I can’t climb on the roof and fix the tv aerial and I can’t take a chain saw to the tree that needs to come down. The things that I can’t do, because of my seizures, intrude in my life and they become a burden on the family, especially for my wife.
Maria: I quite agree. The loss of a driver’s licence can certainly restrict your independence and the ability to share the load within the family. And it can be a long year being seizure-free until you are able to safely drive again. Catching buses, taking taxis, relying on others for transport also takes time and organisation.
Charlie: It is the time managing my epilepsy that affects the family. It can be quite a chore. I am also not feeling quite well these days after my medications were switched from Lamotrigine to Logem. I didn’t know that the medications were going to be switched until I got them home from the pharmacy and I haven’t felt well since I started taking them. I am depressed, more anxious and quite irritable. I didn’t feel like this on my old meds.
Maria: That is bad news, Charlie. I would recommend that your get your GP or neurologist to apply for Pharmac’s exceptional circumstances application for an alternative brand of lamotrigine. When I last saw the Pharmac webpage, 2418 people had switched back to their original lamotrigine prescription. Please don’t feel that you have to persist with feeling unwell. It may be that Logem doesn’t suit you.
Charlie: I noticed that my GP doubled the dose of Logem just to control my seizures but it has worsened how I am feeling generally. I keep hoping for an improvement in my mood but actually things are worsening. I am also sure that I am having seizures in my sleep. I wake up feeling somewhat groggy some mornings and out of sorts. I try and tough it out at work but my lack of concentration affects my output. I have quite high standards and so I can beat myself up a bit if I know that I am not my usual self.
Maria: You work in quite a stressful environment advocating for others. That stress must be hard at times.
Charlie: It is! It also creates more seizures but I have an excellent boss. My boss appreciates what I do and I have supportive colleagues who recognise that I am having it tough at the moment. But I don’t like to let the team down. I know that I am luckier than many people who have epilepsy and who work with difficult bosses. Gosh! If I had a difficult boss it would certainly be adding to my epilepsy burden right now.
Maria: It isn’t easy for many people who struggle in employment whilst trying to manage seizures, or medications or even the lack of a driver’s licence. There are laws governing the rights of a person with a disability and these include the rights of a person living with epilepsy. There are times when I have had to mediate for the employment rights of my clients. It can be hard work at times but I have been successful so far in helping to secure their employment.
Charlie: I am pleased that my employer is great. Do employers not realise that stress is a seizure trigger? Or do some employers create the stress to get rid of people with epilepsy?
Maria: That is an interesting thought. The employer can’t openly discriminate against people with epilepsy. I can say with confidence, though, that I have met some fabulous bosses and workmates. There are times when we all have to pull together to make things work in harmony. A bit like working together in a family which is how we started our conversation.
Charlie: I enjoy our chats, Maria, and we have had many over the years. I am sure that we have righted the wrongs of the universe on many occasions. I will do as you have suggested and apply to Pharmac so that I can have my original lamotrigine prescription back and see if I can improve on my current situation. Thank you for your time and for the help that you give to others.