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Cher's Post

Cher tells us about living with Epilepsy

I was diagnosed with epilepsy in 2011 after finding a Low-Grade Glioma on my Brain. Living with epilepsy has been quite difficult, the first few years, when I had seizures, I would be unconscious for days. Having the Glioma makes having seizures difficult for me as I can become a different person after having a seizure, I am not myself and become very childish. Although I am not unconscious for days after a seizure now, they can be quite frequent which has a big impact on my day-to-day life. My Mum, who is also my carer, will have to help dress me, cook for me, keep an eye on me when I bath or shower etc. It also has a big impact with work, I have been in and out of work for years because my seizures affect my attendance a lot and I feel like I am not useful and leave that job. Luckily working at Little Miracles, everyone has been so supportive of my medical conditions and I have now been working with them for over a year now.

For me, my seizures make me who I am but I can’t say I have not been depressed because of them, they do embarrass me, who I am after a seizure embarrasses me. I don’t like being surrounded when I wake up from a seizure, it makes me feel uncomfortable. There have been times where I have injured myself or maybe wet myself, so having people just standing there, watching you, it’s not a great feeling. Speak to me like an adult, even if I am not myself, being spoken to with that sympathetic voice, or like I’m a child, it makes me feel so little.

I also have non – epileptic seizures and I think having therapy and counselling over the last few years has really helped me control my emotions and any stress, I highly recommend this if stress is a trigger. Talking to someone about my seizures and how they make me feel, having support from friends and family is very comforting for me. Just knowing someone is with me to help me and keep me away from danger is very relieving.

Having seizures has also had a big impact on my friends and family, especially when seeing one for the 1st time and you don’t know what to do, it can be pretty scary. My family now all know how to deal with a seizure, how to put me in recovery position, when to call an ambulance etc. It is all something you have to learn when a loved one has epilepsy.

When you look at me, you wouldn’t think anything is wrong with me, no one really knows what you’re going through so I think speaking up about epilepsy is needed. I wear a lanyard explaining I have epilepsy and what to do if I have a seizure and my carer is not with me so it isn’t too much for a stranger, it isn’t as stressful for them once they know what they need to do, although I am very rarely away from my carer, it is good to have just in case.

If you know someone with epilepsy it is important to know what to do. Make them comfortable, remove any sharp/dangerous items, place them in the recovery position but after that leave them to have the seizure, do not try and hold them down and if the seizure lasts more than 5 minutes then call an ambulance. 

In conclusion, having epilepsy can be quite degrading and an emotional road to be on but having that love and support around me has defiantly made that road a little bit easier to be on. I am still me; Epilepsy is a part of who I am, don’t treat me any differently when I have a seizure, show your love and support, keep me safe and I will wake up less confused and more comfortable.