Our phone chat #15 – Sally

Maria: Hello Sally. It is always lovely to hear from you. How are you?

Sally: Well, you know, I have my bad days and my good days. Today I am feeling a bit frustrated with myself. I used to be an intelligent person once upon a time but I think that my memory isn’t quite what it used to be. What with all the seizures that I have had all my life and the hits on the head when I have fallen over, it hasn’t helped me to remember things. Goodness! What a way to start a conversation. I probably need a hug!

Maria: A hug a day chases the stress away Consider yourself hugged!

Sally: Thank you. I shouldn’t grumble because I am living in a place surrounded by such good people who keep an eye on me. I live in a caravan park and I am really safe here. I tell people situated close to me that I have epilepsy and I have shown a few of them my epilepsy action plan so that they are aware of what my seizures look like and how to respond if I should have one.

Maria: That is reassuring to know. You did have a seizure recently that occurred outside of the camp. What happened there?

Sally: I had one of my focal with impaired awareness seizures. I wandered outside of my caravan in the early morning wearing only my night clothes. By the time that I had ‘woken up’ from my seizure two lovely young men had come to my rescue. One had phoned for the police and the other had given me his warm jacket to wear. Honestly, I was so grateful for their help.

Maria: You have a number of different seizure types.

Sally: I do! I have absence, tonic clonics, myoclonic jerks, focal, and focal impaired. I have seizures most nights and I can be heard screaming in my post-ictal state. I tell those around me to bang on the door if I am making too much noise, but of course I won’t hear them. Occasionally, I have a seizure when I am out and about but, you know, people I meet are so kind to me when I need help.

I don’t want to live in ‘amber alert’ all the time but I know that my world is smaller than most. I don’t feel as free and easy as I would like and I am impacted by my epilepsy. I would really love to be normal.

Maria: Normal is boring!

Sally: Yes quite! That is what Freddy Mercury said.

Maria: I believe that you have had some interesting advice from others regarding epilepsy treatment options?

Sally: I have been told by people to take marijuana or CBD. I would be frightened of taking any substances like that. It is bad enough coping with the medications that I take without worrying about what could happen if I took something different. At least I know how my medications affect me. Taking marijuana or CBD isn’t necessarily going to be the answer but many think that they are the miracle drugs that can treat most things.

Maria: I guess that there is a lot more research to be done on the implications of treating a person living with epilepsy with CBD. We know that it can help children living with Dravet or Lennox Gastaut syndromes. Occasionally, I do hear of other success stories of those people living with other types of epilepsy who take CBD. As for marijuana, many people tend to take this drug recreationally whilst hoping to de-stress. Their belief is, ‘no stress, no seizures’.

Sally: I can identify with that. Stress is my major seizure trigger. The more I stress, the more seizures I have. The more seizures that I have the more I stress, it is a vicious cycle but I still wouldn’t be tempted to smoke marijuana to get out of it.

Anyhow, I best keep going as there is much to do.

Maria: Thank you for your time, Sally. Take care until we meet again.