Well it’s been a while…

I havent updated my blog for a while, or been posting anything to Facebook other than hospital pictures or jokes recently. 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 because of this, but I will give it a try now.

So I’ve once again had a series of hospital stays and neurology appointments. It must seem I have them all the time, but the last 2-3 months have been different in terms of frequency and intensity.

The end of last year and start of the year things were going well. No “flashing taxis”, everything seemed to be sorted as well as it could be. It’s odd, each time you try something else get some hope - this med is working, two week without major seizures, a month, 3 months. The clock ticks and you get hopeful. The doctors get hopeful. Then something changes. Too many visits via a&e and one admittance from the clinic.

A result of one of these was some really good news - scans unchanged. So I’ve started new meds, one of which is apparently a real wonder drug, which I’m so lucky to get. Had an appt yesterday where we thought new meds were working, everything seemed so hopeful. It looked like they have found the solution, so much so the plan is to reduce some of the other meds. Left the hospital yesterday just so happy.

Then, days like today, my brain failed me again. Thankfully (but embarrassingly) just as leaving work so no one panicked (and a&e was full so no one wanted to suggest that). A split lip, bitten through my cheek, a migraine that makes me want to cut my head off. It’s just such a rollercoaster. One minute this intense happiness, the next, for no reason at all that anyone knows; pain, confusion and sadness. I’m so hoping that it’s just a one off, to think it’s not is probably not sensible to imagine, as if Thsi drug was the really hope what is next? Grateful to the ambulance staff who picked me up, assessed then said I could go home. To the taxi guy who ran me back and then didn’t charge as it was apparently on his way.

But after an intense month or so, I finally have a definite diagnosis: epilepsy secondary to cortical dysplasia, and an action plan which tells people what to do if they find me lying on the floor. Cortical dysplasia is something I have heard of, but have stayed away from wanting to know about. I am now, after motivation from my uni supervisor, researching it and the types of epilepsy. So I know, and need to accept, that it is something that will now change my life forever. I am now really 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. It’s very strange. I don’t feel disabled in any shape or form, and it makes me angry that there are things I can’t/shouldn’t do, even though I fully accept the reasoning why, because I cannot accept that if I could do them before why can’t I now?

Having been the staff disability network co-chair for the last 4 months I would have thought that I would have understood this, indeed I tell people I have epilepsy quite happily. But in reality, I didn’t believe it. I accept the ASD and ADHD so count them as the diversity/conditions although not disabilities. Epilepsy has seemed very unreal. I told people I hadn’t accepted it, everyone said it looked like I had. The last couple of weeks have made me realise I really hadn’t, and I still don’t even want to try to. I’m not even one small step down the path to acceptance, which everyone tells me will make everything much easier.

The requirements needed to keep safe are to quite life changing. I have always valued my independence, but now I am supposed to 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 and haven’t yet found a way to do so. It takes practice and a serious overcoming of my ego and pride. I'm not sure I will ever be able to do this as much as I should, if at all. At the moment, I find it impossible. I feel that my life as I knew it has ended. That now all hope of getting back what I had has gone. 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. I knew that the MRI was abnormal, and my consultant had discussed on two occasions that it was epilepsy. I have repeated this on social media, participated in the support groups, offered my experience, been fighting for the reduction in stigma. But it wasn’t real in a way. It was as if I was talking about another person, a different one to me, perhaps my avatar, where I could see the experiences but dispassionately, not feel the emotions,

I had managed to convince myself that as the majority of people were saying I had dissociative seizures I hoped that this would ultimately be the outcome, 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. I even hoped, and this sounds really stupid, that at one appointment I would be told “I’m so sorry, we got the diagnosis wrong”, or “we had the wrong scans”. Now as I as I do research with the neurology team and know how good they are, and also as my main job is the computers systems so know it is impossible to have put 5 scans to the wrong person, this seems very stupid. But the hope was there. I think it still is.

So when I heard the words "You have epilepsy”, even more to see it written in black and white on an action plan, 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 over the hospital stays and appointments but hadn’t been able/wanted to listen or take in any of it until I finally read the discharge letters fully.

I felt incredibly detached, very distant, as if I was watching it as an onlooker yet apparently to everyone else I everything in my stride. I really don’t. 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 am so grateful for the time taken to explain the same thing multiple times to me, to answer the same questions, to be so kind. Many thanks to the Royal Free for enabling this and to Dr Angus-Leppan for the way she takes the time to treat you as a person.

This detachment has changed over the last week or so whilst the confusion remains I have had a feeling of loss and sorrow that I cannot shake, and randomly I’m very angry at everything and nothing. 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 a piece of paper and some 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 usually months apart and there is nowhere easy to contact in between.

You would think that as I’m doing research I would be able to ask the questions, find the answers. Entirely wrong. Each time I leave the hospital, and after every appointment, I have nothing to ask, I am completely informed. One day later I have so many questions, yet no one to ask them to because I don’t want to bother anyone, be a pain, seem as if I’m attention seeking. My research tells me this is common to people with long term conditions, particularly epilepsy. But that knowledge doesn’t actually help!! Everyone has been so kind, yet you do feel that no one can provide any of the things you need. No one can give you the answers to the questions I have until my next appointment, at which I sit like a rabbit in headlights asking nothing, or the same questions I’ve asked before. To anyone who doesn’t know me I must seem very strange.

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 trying to impose their culture, belief or needs onto me, only because they want the best, but not able to hear what I say I want.

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. The issue is, I can’t even come to terms with that myself.

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 early at every appointment so I didnt hear the diagnosis? Stuck my fingers in my ears? Should I have refused the discharge letter and action plan? I know I always tried to discharge myself early in an attempt to prove I’m fine, and also because I know that I won’t get the paperwork. This time, I was asked to stay in, I promised, so I did. I guess that’s a first. I cannot break a promise, my weak spot, trouble is it helped in many ways, but didn’t help where I find myself now.

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. Im not sure what they are yet - a PHD but I can’t let myself hope that is possible, London Marathon (in 2 weeks which is not ideal!).

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, they have provided unconditional support and kindness. I am so grateful to them all.

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. Believe me, some elements of epilepsy are embarrassing, there is no way round that. But that is for me to worry about, no one else has to. And to be honest, I was genuinely pretty shy before - after a few hospital stays that is rapidly overcome and things seem a lot less embarrassing!! So don’t feel bad for me, that part is the one part I have managed to accept weirdly.

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.

So I will run the London Marathon next week. For the Epilepsy Society. And again next year for the Royal Free Charity Epilepsy Fund. 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. I also hope that the research I’ve been lucky to be involved in can really come up with some options for people with epilepsy across the world. Giving them the knowledge and reassurance that they need, allowing them to live their lives as they want to.