Tina

"About a year ago my life changed completely. Unfortunately, after 13 years seizure free, I had to deal with the return of my epilepsy. For whatever reason. Easter time last year, I’d had a few partial seizures, which scared the hell out of me, and I brushed off as 'something else' thinking it couldn’t really be happening. Then on Easter Day last year I had a full tonic-clonic seizure. ⠀

"I knew straight away. When I woke up with my husband standing over me asking me what’s happened and if I’m ok, in the pit of my stomach I knew. Then I said they’ll take my license from me. Which they did. For days I was in a daze. Unable to connect the dots and be fully coherent.⠀

"I lived 20 miles from work. Easy if you drive. Not so easy if you don’t. I started to piece back my life, with the shattered and shocked heart and head that followed and the reality of what was happening. Honestly, I felt ashamed. I don’t know why. But I did, I didn’t know why this had to happen. Losing my independence felt like the biggest kick in the guts ever. And I felt it wasn’t fair. Even though I live my life by 'everything happens for a reason'. I can’t imagine how horrible it was for my husband to see this.

"So I was now dealing with 4 hours a day on the bus travelling to work, to an already struggling business. Coming home physically mentally and emotionally exhausted and upset from the sheer tiredness of the journey. Many people said “it’s just a bus ride”. Yeah it was. But it’s not relaxing. It’s not enjoyable. It’s 2 hours each way, where I couldn’t be comfortable or take a pee, the noise and the heat was unbearable at times. All this was contributing to my epilepsy.⠀

"I was carrying the guilt and the responsibility for being the one to come and say I couldn’t do it anymore. In my heart I knew, there was no telling when I would get my licence back. And I certainly couldn’t do this for ever. So I chose, for my health and my husband and children to say no more. I wanted to walk away from the salon. The hardest decision ever. I loved my job so much and all our wonderful clients over the years had become our family. The backlash from some individuals was unreal. People made judgements on what they thought they knew and how selfish I was being.⠀

"I chose not to make my medical circumstances public. I was still coming to terms with the life changing events unfolding before me, my children and my husband. Epilepsy is life changing. Like so many other hidden disabilities.⠀

"In the months that followed, I discovered that I have a problem with the space developing around my Hippocampus part in my brain. At the age of 42, seizures which can be fatal, dementia, memory loss and altered mental state is not words I thought I would ever be hearing. Yet here I am. Wondering when the day will be I don’t recognise my husband. Or my son. Richard didn’t sign up for this when we started dating 3 years ago. It’s not fair on him. We married last year. In sickness and in health. I literally choked when I said the words in church. He meant it. He held my hand so tight and He told me take each day at a time and we will deal with what comes.

"Unfortunately, a few weeks ago, I had another seizure. Only this time, I was hospitalised with serious head injuries. Stitches in my head, a cut and bump on the back of my head, glued chin, two black eyes, a fractured cheek bone, and serious whiplash. I did a proper job. And once again, another year without driving. I’m gutted. The impact on my life this time round is less than last year, but it could have been fatal. Where I fell, I could have literally killed myself. When this happens, I am paralysed in speech and I black out. So I can’t call for help. I try and reach my bed for safety. I’m thinking a crash mat in the bedroom may happen soon.⠀

"The sadness that goes with epilepsy is that you aren’t allowed to even take a bath by yourself. I have to literally tell someone every time I do something “just in case” even if it’s just a walk to the shop, I’m not allowed to go swimming or even take a shower by myself anymore. I’m forgetful, so if I ask you 4 times before the kettle has boiled if it was coffee or tea. I genuinely can’t remember, if I blank out halfway through a conversation, I’m not being rude, it’s because I’ve forgotten what we started talking about.⠀

"Every night I wake up and need a wee, I thank my angels that I have made it back to bed without a 'fit' and every morning I wake up next to my husband, and have my children and family with me, I am truly blessed and grateful for another day.⠀

"This has taught me so much. I take every day as it comes. And I don’t analyse my future. I can’t. I’m not there yet. So through all of this, I am finally truly present in my life. And for that I am also truly grateful. Please never judge someone on what you think you know! Because a lot of us are hiding the truth."

Tina
Add your story