A Downward Spiral

So, I've just got my diagnosis. I'm a new person, this person with a neurological condition which, to be perfectly honest, I didn't know anything about or before this day had much interest knowing about. I look back at my young, naive self and I think how awful was I to not think about those suffering with epilepsy, I always did my bit for raising awareness for cancer but never for epilepsy. The awareness and understanding of this condition is just not out there.

The two weeks following the appointment with the neurologist were, to put it bluntly, horrendous. Getting into the routine of taking medication twice a day was hard, it felt alien to me, I had never had to take medication before. I was struggling to deal with the diagnosis, I felt upset and angry that it had happened to me but then I would get annoyed at myself for questioning why I should happen to me, because why shouldn’t it be me? My mind was doing somersaults with emotions, I was all over the place, mood swings (mainly taken out on my Mum) and I just didn't know who to turn to or what to do with myself. A week after the hospital appointment, my boyfriend of nearly two years ended our relationship. From that moment on, all I could think was now I am this 'new person' no one is ever going to want to be with me, no one is ever going to want to deal with someone who has baggage. I began bullying myself, picking myself apart, telling myself I was the ugliest human being alive, a horrible person, stupid, boring, fat and alongside that I am an epileptic. This person who has seizures, which can cause you to embarrassingly wet yourself during them, cause horrible injuries and basically make life difficult. Therefore, I came to the conclusion I would spend the rest of my life alone. I would never have the beautiful wedding I had always dreamed of (I adore weddings, I watch every wedding programme on TV), I would never be able to start a family.

Then, more bad news. Two weeks after my diagnosis, my Mum was diagnosed with thyroid cancer. I felt like my world had been ripped out from underneath of me. She is my best friend, I couldn't do anything without her, the thought of her having cancer, well no this just couldn't be true! I remember the night she told me as if it was yesterday. She sat my brother and I down at the kitchen table and she was crying so I knew something was wrong. She did what she always does where she tries her best to make light of every bad situation (typical Mother I suppose) but then the two words "it's cancer" came out of her mouth and I just didn't know what to do with myself. I ran and locked myself in my bathroom. I sat on the floor and cried and cried and cried. I couldn't look at her, I didn't know how too. I know it seems selfish because she needed me, she needed me to be there for her, like she was there for me when I got my diagnosis but the shock, fear and devastation that rushed through my body took over and I needed time to get my head around what she had just told us. Part of me had also hoped that if I locked myself away for a while when I came back out it would have just been a terrible, terrible dream, as stupid as that sounds! Mum had two surgeries within two weeks, it was so horrible to see her go through so much pain and suffering, I just wanted to take it from her. The next step was radioactive therapy, I just needed it to be over, I needed her to be better, I needed to know she was clear of this.

My Mum's bad news, my boyfriend splitting up with me and the stress of the new diagnosis caused me to have a seizure. I was in the car with my Nan, chatting away and the next thing I remember she's walking me through the door to their house and lying me down on their sofa, then I'm out again. I'm in and out of consciousness all evening, like usual and the thumping headache is agonising. Seizures began to happen rather frequently after this, I can’t say I remember exactly where I was or when they were but my family and I always remember the big situations.

The first medication I was ever put on was Keppra, my neurologist informed me that it was a very popular drug for people of my age and was very effective so I felt extremely reassured that my seizures would be under control. Well, I was wrong. Not only was I having seizures, I was loosing weight rapidly due to depression. Maybe my mental state was unstable due to my Mum’s cancer diagnosis, dealing with now being an epileptic and dealing with my break up but I was extremely insecure and my behaviour was unpredictable. I cried every single day, hysterically. I ran away from home several times, on one occasion having a seizure on my own whilst I stayed away for a couple days. I had suicidal thoughts; I honestly believed life was not worth living, now I can't believe I actually thought that! I was horrendous to my Mum, she took all my anger and upset, I was so verbally abusive to her as she was the person that all my frustration was taken out on. I didn’t sleep, I could barely eat, I did not know who I was. So, I was put back on anti-depressants and I was given sleeping tablets to help me sleep (they were not pleasant). The tablets helped a little bit but I was still having seizures, I was still feeling depressed, I was not the person I had always been, I was so insecure. I think my Mum knew my body wasn’t responding well to the Keppra as she had read the information leaflet and realised that depression was a possible side effect. But, we preserved. I tried my hardest to carry on with life, still going out with friends, still working but I have to admit, it was extremely hard.

In December 2012, the first big accident occurred from a seizure. I was getting ready to go out with my friends for the evening; I was really excited as it was my friend’s birthday. The last thing I remember was being sat on the edge of my bed reading a text message and next, my Mum is cuddling me, my bed is pretty much on the other side of the room, my Nan is in the doorway and I could see my brother and my Dad but only vaguely, then I'm out again. When I come round, I am in A&E with my Mum, Dad and Nan, I am led on my Mum’s lap, she is stroking my hair. What is going on? I have the usual headache so clearly I have had a seizure but why is my shoulder throbbing? Turns out, an X-Ray confirms I had broken my collarbone. Well fabulous! The A&E department explained I would be referred to a specialist to see if I would need surgery. So, arm goes in an extremely attractive sling and then I wait for my appointment. When my appointment arrives, my Mum and Dad take me into the fracture clinic at the RUH and we sit in the very busy and stuffy waiting room. We are called through, to my delight; the doctor who greeted us was very easy on the eye!! He was just wonderful, I don’t think I minded whether he told me I was having surgery or not anymore, I was just busy staring at him and how lovely he looked in his navy suit. Mum just looks at me with the “he’s alright isn’t he?” look and we both smirked. Unfortunately, it was bad news. My collarbone was severely broken. Of course I would do a good job! I would need surgery, a metal plate and eight screws… I was devastated, the delight of seeing my gorgeous surgeon disappeared, I was now going to have to have surgery in the new year and I was terrified.