New Website

I now have a new website for my blog so will no longer be posting on this site. Please go and look at my new site and keep an eye out for new blog posts. Thank you so much!

www.lifeasanepileptic.com

The First Big Operation

This post is part of the Epilepsy Blog Relay™, which will run from March 1 through March 31. Follow along and add comments to posts that inspire you!

I am preparing myself for the surgery on my right collarbone, and I am petrified. I have never had a big operation before and I am so unsure of what is ahead of me. The surgeon (the extremely attractive one) has informed me that he will need to place a plate and insert eight screws into my collarbone. He told me that the scar would be four inches long and would vertical on my shoulder. I was so anxious about the appearance after surgery as I have always had prominent collarbones so I was extremely concerned that the plate and screws would stick out and look very weird. However, there was no other option than to operate, as the break was so severe.

My parents take me to our local hospital in January 2013, a New Year and I was starting it with an operation, fabulous! I was starving, I hadn’t eaten for ages and I love food far too much. As the nurses prepped me for surgery, the nerves began to increase and I started to think the worse, as you do, about everything possible that could happen during an operation. Will I wake up, am I going to die (awful thing to think I know) and is everything going to go wrong. The surgeon came to talk to my parents and I and talked us through the procedure again and reassured us that everything was going to be again. I felt slightly more relaxed as I knew he was an experienced surgeon in his field and he was a lovely man but the nerves were still extremely prominent. Soon after, the nurses came to collect me to take me down for surgery. I said goodbye to my parents, my Mum was crying (shock) and I all of a sudden had a huge lump in my throat. I was wheeled through the hospital, the nurse was talking to me constantly, she was so sweet and could obviously tell I was nervous and did he upmost to try to keep me calm. I then arrived at the initial room, which was small and sterile. This room was where I met my anaesthetist who was the last person I saw before my operation. She was asking me lots of questions about my family and friends whilst administrating the anaesthetic and sooner or later, I was asleep. 

Next thing, I can see bright lights, I have an itchy mask on my face and I am feeling rather sore. I was in and out of sleep due to the anaesthetic and morphine but I know I am in the recovery room and being shouted at for taking the breathing aid mask off of my mouth. It was unbearably itchy but I needed it whilst in recovery, apparently! The next time I wake up, I am being moved to my hospital room, a beautiful private room with a delightful view over the fields, the best place to recover.

NEXT UP: Be sure to check out Lainie Chait, http://livingwellwithepilepsy.com for more on Epilepsy Awareness.

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.  

The Start of a New Beginning

"You have epilepsy", three words that changed my life forever. I can't remember what the neurologist said after hearing that, about medications and controlling seizures as I was in a total state of shock. Me, an epileptic, surely not. I was an 18 year old girl, healthy, athletic, I had an amazing family, friends and a boyfriend, there's no way that I could have epilepsy, I was fine. I simply didn't want to believe it. But, apparently it's true, I am an epileptic and that is a fact. 

The first seizure I ever had, well the jokes that were made that day! I was 16 and it was a normal school day, boring (until break and lunch of course) but I was so excited as I had the best weekend planned, cinema Friday evening to watch the new Harry Potter and an 18th birthday party on the Saturday. I was stood outside of my Philosophy classroom with my friend, eating a chocolate bar as I am the worlds biggest chocoholic and bam, next thing I know I'm in an ambulance. Paramedics stood over me, my Mum stood by the side of me crying, but it was so vague, it was like a dream. The only thing that was clear was the excruciating headache that felt like nothing I had ever experienced before in my life and then I was out again and I didn't wake again until in a hospital bed in A&E. In between my conscious and unconscious state, doctors and nurses did their usual blood tests etc to find out what the deal was but came to the conclusion I had 'fainted' which all young girls are allowed to do once, so off I went home to sleep it off. I also had a beautiful bump on my head! Going back to school on the Monday, the joke was I had choked on my chocolate bar and fainted, it certainly made light of the situation! 

In the next 18 months, my brain began to do weird things. I struggled with my memory but had no idea why, things that I always used to be good at such as exams and academics became a battle for me and it became extremely frustrating and upsetting. I started blacking out frequently, having conversations with people and just going blank and having no idea what they had said to me. My sister used to get so angry at me because she thought I wasn't listening to her but I genuinely had no control over what was happening, but I didn't know how to explain it so I didn't even try. My sister and I laugh about it now of course, however maybe it was a blessing when she was boring me (only joking Em). I became increasingly tired, my body struggled to do the everyday activities that I used to be able to do with ease and no matter how much sleep I got, I never felt refreshed. And the regular headaches I got, well they were enough to drive you insane! I knew something wasn't right but I just didn't know what.

In November 2011, I dropped out of Sixth Form, something I never wanted to do. I was diagnosed with depression. I look back now and I'm unsure if I really was depressed at that point, I know I couldn't deal with the changes happening to my body but I don't know if depression was the right diagnosis but hey ho, antidepressants it was. After about a month, I came off the antidepressants as I felt a whole lot better in myself, I had just turned 18 (had an eventful 18th birthday party which my parents still talk about to this day), had been with my boyfriend for a year and my friends were extremely supportive so I felt in a good place. I started working full time in a hair salon where I had worked as a Saturday girl since I was 14 and I loved it, my boss was like a second Mum to me, one of the kindest people I have ever met. Things were good and the next 6 months flew by, happy Alice, forgetting about these changes to her body and just getting on with them. 

Then, life took a turn for the worse. I had been out for the evening to a nightclub in Bath with my good friend, boyfriend and his friends and then the next morning got up and was on my way to take part in Race for Life. This is when everything changed. The last thing I can remember is talking to my boyfriend in the car and then the next thing, I was in an ambulance, ah we have been here before! Next, I am in a hospital bed in A&E (all too familiar). All I can say is, I hope to god I never have to have a lumbar puncture again in my life, one of the most painful experiences! The doctors were amazing and so thorough to make sure they didn't miss anything which meant MRI scan, CT scan, blood tests and the dreaded lumbar puncture and fortunately they found nothing! However, this doesn't explain the seizures so I am then referred to a neurologist.The night in the hospital was certainly memorable though.

Waiting for the appointment with the neurologist was the longest wait ever. It felt like the couple of hours on Christmas morning when your parents say you aren't allowed into their room until 7am (thanks for that Mum and Dad) but you're awake so early because you're super excited and it feels like 2 hours have never gone so slowly. But, the day finally arrives, both my parents take me and my boyfriend comes too as he witnessed my seizure. We sit in the room that has white walls, minimal furniture and an overall unwelcoming feel, very hospital like I guess. The neurologist begins talking, asking for all the details, looking over the medical information from the A&E department and then the conclusion...

From this moment on, I was an epileptic, I would take medication everyday and I would have to be careful with my way of life to ensure my seizures were kept under control. From this day forward, my life as I knew it, would never be the same again.