Blog Forty Two

I havent updated my blog for a while, and there is a reason although to many this will seem a little strange and self pitying, but it is honestly how I have felt. I havent been able to physically sit and write about why but I will give it a try now.

So on the 2oth October I had another Neurology Appointment. The diagnosis was epilepsy caused by cortical dysplasia. Not something I have ever heard of, but something that will now change my life forever. I am now counted as having a disability that I cant “get better” from. No matter how hard I fight, or work, or research it will always be with me.

The requirements needed to keep safe are to quite an extent life changing. I have always valued my independence, but now I will always be reliant on others for simple things I enjoy such as having a bath which is not safe to have alone, to not being able to use our open fires or cook on a direct heat source if I am alone (which I am a lot). I hate asking for help but now I will have to, although I think to do so will take some practice and a serious overcoming of my ego and pride. I'm not sure I will be able to do this as much as I should, if at all. I feel that my life as I knew it has ended. For now it has certainly come to a stop and it will be more than just a new normal when it restarts; it will be a complete change of focus, lifestyle, both physically and mentally and has really thrown me in the last few weeks.

It turned out to be quite a shock although it shouldn't have been. One of the consultants when I was in hospital previously had said that the MRI showed signs of epilepsy but I think I had managed to convince myself that as the majority of people were saying I had dissociative seizures this would be the outcome. Im not sure why I hope for that but I think that it is because dissociative seizures are something that you can recover from, there is work that can be done to mean you dont have to rely on medication to be seizure free. So when I heard the words "I think you have epilepsy’ and to see it written in black and white on the summary letter, it seemed so final, so cold and clinical (not that it could be anything else) and a definite ending of my life as it has been until now. I heard many things after this at the appointment but wasn't able to listen or take in any of it. I felt incredibly detached, very distant, as if I was watching it as an onlooker yet apparently to everyone else I took it in my stride. I really didnt. This is a strange reaction for me; I can usually take everything as it comes, albeit sometimes after a meltdown! This time no meltdown, in fact no emotions at all, just confusion and a complete numbness to everything in life. One positive: I was so grateful that it was a face to face appointment and I heard it whilst sat next to the person talking, as to hear it over the telephone or in an online consultation would have been even harder. Many thanks to the Royal Free for enabling this and to Dr Angus-Leppan for the way she takes the time in her appointments to treat you as a person.

This detachment has changed over time; whilst the confusion remains I have had a feeling of loss and sorrow that I cannot shake. Very self centred of me, as I knew this was coming so I am also angry that I am being so selfish. I have been unable to think clearly, I am worried about small things, stressed about nothing and all because of five words. I am at a total loss as to what I can do now, where I go from here, what happens next. When you have an acute illness you are given a pathway of care which begins very quickly, during which you are kept relatively busy and have many opportunities to talk to people. With a chronic condition such as epilepsy this is different - appointments are months apart and you see no one in between. That day I walked out of the room, was immediately sent an appointment for 12 months time and thought I was okay. One week later I had so many questions, yet no one to ask them to. Everyone has been so kind, yet no one can actually help. No one can provide the answers to the questions I have until my next appointment next year.

I am no stranger to labels having known for a long time I have autism, but epilepsy I have found is a differnt ballgame. I have met, for the first time ever, discrimination in many forms. Whether this is through people trying to help or thinking they understand what is best for me but in trying to help actually take away my independence which I am desperately clinging to. People deciding that my perceived lack of compliance means they cannot, or do not want, to listen to my feelings and decisions and so try make choices for me or feel that they have to break contact entirely. People who dont understand what epilepsy is and what they can do to help, or how to offer help.

People are scared I will have a seizure, scared of what the condition means, what the dangers are, and so not feeling comfortable being around me. Some feel that I am attention seeking, others that I am taking unnecessary risks. My family feel guilty, particularly my parents who blame themselves for somehow being the cause and feel they could have done something to prevent it, or have noticed earlier (either of these would not have been possible). I am not angry or upset with anyone who has found they have to move away - I fully understand and I never bear a grudge. It is tough and whilst we all hope we would react one way in a situation the reality is you dont know until you find the situation actually happening. I have been trying to help everyone understand, to feel that they can talk to me and express their worries, to understand that there is nothing that anyone could have done to prevent this and that there is no way to fix this.

I realise that I am frantically trying to cling to the friends that remain, trying not to upset anyone and to reach out to all I can, whilst simultaneously wishing I could run away from everything and everyone. I am trying to work out how I move forwards with all the restrictions that this condition seems to bring. Where do you find enjoyment when everyday actions pose such a risk, when you know you could have a seizure and wake up in a hospital or an ambulance at any time? I find my world is now very small, both physically as I am scared to go out in case of seizures and mentally as there is so much I wanted to do which is now not possible or if it is, will be too expensive to risk manage that it is not viable.

I wish I could turn back the clock, but what would that do? Should I have walked out the room earlier so I didnt hear the diagnosis? I certainly wish that my first seizure, indeed any seizure, had never been noticed. I wish that life could have continued, all my plans could have taken place. I wish that everyone could be fully accepting and understanding. I certainly wish not to be so emotional, erratic, irritable, at times verging on unstable as I work through the impact of this. Im trying to be the “normal me’ (whatever that is) but feel like a totally different person. I hope that this will change and I revert to the person I was but I suspect it wont. . One day I have to feel myself again, to find the beauty in the sun, rain and life, to actually feel anything other than a vague sadness and hopelessness. In the meantime I will keep trying to move upwards from the place I find myself in and forwards to restructure my goals and plans. My first plan is to start running again so at the very least I can achieve some of those goals.

I have found comfort from the strangest of places. Whilst many of those who were friends have run or pulled away, I have found that people who were aquaintances, those who I thought I had drifted apart from, have been phenominally supportive. I have found huge comfort and advice from complete strangers online, on social media, from the running community and from new work colleagues. There are a very few people who have known all along what was happening, who have always been there, who I have trusted to keep informed as things developed and who I trust without question. They are so important to me. My neurologist, staff at the Royal Free Trust, Cwm Taff Morgannwg HB, the Princess of Wales Hospital and the team from the Royal Free Charity have provided unconditional support and kindness. I am so grateful to them all.

The lack of understanding of epilepsy, seizures, what they look like, what people should do is quite honestly unbelievable. I find people are embarassed to ask, whether because they are worried they are overstepping a boundary or because they are worried they will upset me - I would rather be asked and have the opportunity to discuss what worries people, what to do and my feelings about it than people just drift or pull away without giving me the opportunity to talk to them. The lack of education around epilepsy is truly staggering and this seems to lead to the fear and confusion around the condition which in turn leads to discrimination, isolation and mental health issues. We are so much more aware of other conditions but it seems that there is an embarassment for people to come forward and admit that they have epilepsy, to demonstrate that you can achieve in all areas of life despite the condition and to ensure that the image of someone with epilepsy is not that of someone shaking uncontrollably on the floor but of a person who has their own mind, beliefs, ideals and future who has to cope with the risk of seizures but who does not want the condition to define them.

I will continue to raise money for the Risk Assessment App and further research. I hope to raise awareness about what is is like to have have epilepsy, to raise awareness about what those with epilepsy can achieve. We must educate and raise awareness in the rest of the population to reduce the fear around seizures in order to reduce the stigma of the condition. This needs to be done so that people can live their best lives.