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Is your battle my battle?

I agree. Fatigue is a big part of this post. I’m tired. I’m emotional not hormonal. I’m grateful for what I have, but feel short-changed. I feel guilty for feeling that way.

I read about a lady battling to get her husband the support he needs to live with his mental health problems. He’s homeless because he can’t be around his kids, he is being over-looked by an over-whelmed healthcare system. His kids know he’s homeless but don’t understand why he isn’t being helped. He doesn’t tick the right boxes so he isn’t a priority. He is deteriorating on a daily basis, his wife is desperate to help him but is being blocked at every turn. Yet, she keeps fighting. She fights every day.

People like her give me hope for a future that I struggle to see. She’s doing it for her kids. She’s doing it for her husband. The side effect of that, is that she is doing it for me and for you too. What society as a whole, I think, tends to forget, is that we are are ALL a single, unexpected event away from the situation this lady finds herself in. She didn’t marry a man with obvious mental health issues. She didn’t have children with a man with obvious mental health issues. Yet a single circumstance sees her on a 9-year battle to get help for him. I feel humbled by her battle and in awe of her strength.

And yet.

I, like so many of us, can’t comprehend her situation. Can’t see past our own circumstances. Is this wrong? On so many levels it feels like it is. I feel guilty because I can’t give the wider issue that she raises the due attention it deserves because I’m wrapped up in my own. Aren’t we all? On another level, I feel grateful. I feel such a sense of relief that I don’t have to live everyday raising small humans to be decent citizens while trying to explain to them how society, as a whole dare I say, is letting their father down. Is it enough to think “that’s terrible, I wish there was something I could do” and move on to the next story? Well we all know the answer to that. At least I hope we do. Yet, it really isn’t that clear cut and simple, is it.

My issues, my mental health problems seem minor in comparison. I equally hate myself and commend myself for saying this. My situation is different. Completely different. Yet, the facts remain. I have epilepsy, I have MS, I have depression (& before the pedantic police pull me up, yes I know I’m supposed to say “suffer”), I have mental health issues and I struggle to see a way forward. I’m still functioning in society though and for this I feel grateful. Or am supposed to feel grateful.

I just don’t know that a society by which it’s ok to let a man and his family suffer for 9 years because the man doesn’t fit the right boxes to get him adequate help is the society I want to live in. It seems all I can do to try to change that is continue to help the lady raise awareness of her situation and to vote. Oh don’t get me wrong. A huge part, the vast majority indeed, of society are good people. People who are shocked and saddened when they hear of issues like this. That’s a good thing. Yet, I feel that we are gradually moving toward a time where this lady’s circumstances are the norm.

How very sad.

My own issues, when compared to this lady’s pale in comparison. But they are still valid. They are my day-to-day. And I suppose that’s what we all have to remember. It’s all relative. I can’t compare my situation to hers because it’s so very different. I can sympathise, but struggle to empathise. Perhaps because I really, simply just don’t want to imagine what it must be like to walk in her shoes.

I feel tired. I bet she does too. I feel emotional. I bet she does too. I’m battling my own demons, I bet she is too. I am utterly fatigued. I wonder if she is too. Her kids are suffering more than a child should. I don’t have to deal with that. Her husband is suffering more than a husband should. I don’t have to deal with that. She is battling hard to raise awareness. I wonder if I do enough of that. She is battling every day. I wonder if I have the strength to do that. Her pleas for assistance from the relative bodies are, effectively, being ignored. I struggle to raise to the relevant bodies my pleas.

The differences are pronounced, but the similarities can be found.

The moral of the story, in my eyes at least, are epically biblical. “There, but for the grace of “xxx”, go I”.

Another disjointed outpouring from a fatigued and emotional mind.

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If sleep is for the weak…

No sleep for me again. My levels of fatigue at the moment are incredible but not in a good way. I want to sleep all the time and not because I’ve been burning the candle at both ends. I have a visit to the MS nurse this week and I’m really hoping she can suggest something that doesn’t come in a pill form to help me. I’m terrified of sleeping tablets and I’ve been on the losing side before, of a drug that was just meant to invoke mild drowsiness as a side-effect to dulling the effect of some of my MS symptoms. Coffee is my best friend at the moment.

Apparently though, I’m “strong”. I get that a lot. It sometimes makes me inwardly laugh as it seems my highly strung out, totally stressed and complete terror manifests itself as strength…in the eyes of others anyway. I wonder if my complete inability to acknowledge my fear and ask for help comes across as strength? Surely not. Perhaps it’s the fun I poke at myself and my epilepsy that makes people think I feel the same about my MS? I don’t.

God knows, when all this kicked off I tried really hard to be positive. Really hard. I changed my lifestyle to try to give myself a better chance of beating the odds, it didn’t last. I think the fatigue plays a massive part in this game. The more tired I am, the less convinced I am that I can scupper the negativity and regain the rosy view.

So that all got me to thinking invention and reinvention.

Invention, I suppose, is best described as the creation of something that didn’t exist. Then reinvention is taking something that exists and changing it to create something new. But, if necessity is the mother of invention, then what is the mother of reinvention? Evolution?

Take the wheel. We are often told that we should not try to reinvent the wheel, but was the wheel ever actually invented or rather did it evolve from something else? Around 5000 years BC there wasn’t any knowledge of a wheel per se. People – think Egyptians – used other methods to move objects. Logs for example. Logs are round(ish); wheels are round. So did the use of logs precipitate the evolution into wheels? The invention of the wheel can not be attributed to a single person. Around 3500 BC, across several cultures there is evidence of a wooden wheel being attached to carts. Then the wheel evolved further into the multitude of different “wheels” that we have today. As populations grew, trade increased and with other developments, I guess the invention of new circular objects, for example cogs, was required. Evolution is then the mother of reinvention, yes?

How does this relate to me then? Well, my life is evolving. Rapidly. These changes mean I need to make adjustments too. Is it time for a reinvention of myself? I don’t know. I’m rambling. It’s the tiredness…

The last few weeks have seen a new set of challenges. My Mum is in hospital, my Dad is using a washing machine unsupervised and the shower has started shooting water from the wall instead of the shower head.

The camel is, once again, being stacked with straw.

Sleep is for the weak…coffee is for the strong!

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What’s the difference?

I’ve always tried to be open and honest about my epilepsy and how it affects me and therefore, potentially you. There are several reasons for this, the main one I admit is for a selfish reason – it is better for me if you know that I have epilepsy and so if you see me having a seizure you are less likely to panic as you know its “normal” for me. Secondly, I always offer to talk about the disease, the effect it has on me, my family and my friends; this, I believe, helps to raise awareness and go some way toward dispelling the stigma that unfortunately still surrounds the disease. I’ve talked about my own experience with stigma before (Epilepsy and Stigma…) so I won’t labour the points here, but it saddens me that it is still something that we have to cope with along with everything else. I also, selfishly again, like people to know that a diagnosis of epilepsy doesn’t have to be the end of the world. Although, I admit, sometimes it can feel that way.

Often, one of the first pieces of information a newly-diagnosed epileptic (yes, I know that in this modern world “epileptic” is a label that we shouldn’t use, but as far as I’m concerned I am epileptic, in the same way, that I am brunette and that I am green-eyed. It’s a descriptor in my book and not a bad word) is given, is a list of the things they can no longer do. Driving, swimming, diving, etc. Few, in my experience anyway, are given a list of things they can do. I like to believe that this is because the list of cans far far outweighs the list of can’ts. Even then, what we are told we can’t do is often a slight misnomer. For example. I was told I couldn’t swim anymore. I virtually lived in the pool. I swam every day for my club, I also was a regular high board diver. Being told that I could no longer go to the pool was devastating to me. And, it wasn’t true. I emphasise here, that there are many people who suffer far worse than me from their seizures and for them, perhaps, it isn’t safe. What I wasn’t told, was that providing I was accompanied by someone who knew of my condition and how to help me and that I informed the lifeguards on duty, then there was no reason why I couldn’t continue to swim. I did lose my driving licence and I’ve never been able to get it back. This is because my seizures can be unpredictable and while I have gone the required 12 months (it used to be 24) and so I could apply to have it reinstated, it would not happen as I can’t demonstrate that I am controlled and my GP would not sign it off. I think I miss the freedom that being able to drive would bring on so many levels, however, I balance this with the knowledge that I will never cause an accident through having a fit at the wheel and so potentially ruin another life.

Telling people I have epilepsy usually elicits two responses. The first, the most common, is that there is simply no acknowledgement of the information. That’s totally fine with me. I recognise that while I’m comfortable talking about it, others perhaps aren’t and for a myriad of reasons. The second response, is generally, “thanks for telling me that, it’s useful to know. Perhaps you can tell me about it?” Yet, what I only very occasionally hear, is “I have a friend with epilepsy” or “my xx has epilepsy”. In the 20 years or so that I’ve been extremely open about my disease, I can count on one hand the number of times that response has come. My experience sharing my MS diagnosis has been vastly different.

Telling people I have been diagnosed with MS has been a completely different kettle of fish, to announcing I have epilepsy. Firstly, it took so long to get a diagnosis, that I couldn’t tell people what was wrong, all I could give them was a range of afflictions of varying severity that it could be. The medical debate as to whether my optic nerve issues are MS or something else still rages on, but for the purposes of this post (and my mental well-being) let us pretend that it’s all MS related.

The initial similarities between the reaction to the MS diagnosis and the one for Epilepsy are actually pretty similar. Although, I guess that’s not really much of a surprise. Shock, terror, panic, tears etc were all present on both occasions in the early months following diagnosis. My lack of knowledge about both diseases was a factor. Epilepsy when I was 17 simply wasn’t discussed, I didn’t have Google (this was 1988 people) and I dealt with everything by internalising it. If I didn’t acknowledge it, it wasn’t happening. The classic, as my brother often describes it, sticking your head in the sand and hence leaving your ass exposed. I knew nothing at all about epilepsy and my knowledge of MS started and ended with horror stories, Jacqueline du Pre’s death springs to mind as being the only real story I knew of where MS was the destruction of her career and life. She was younger than I am now when she died. The only other exposure I had to MS was hearing about other tragic stories in the media. So my complete lack of any factual knowledge of either disease was total. As an adult, I think that I dealt with my MS diagnosis in a bit more of a mature way. At 17 I didn’t know what to ask and of who. Being as I’d basically shut down, then chances are I wasn’t going to ask anyway, but perhaps if I’d been pointed in the direction of a support group, then it may have changed things for me. Who knows? At 45, I asked questions. Sometimes, I didn’t get answers, sometimes I didn’t want to hear the answers, but ultimately, I had/have to face up to the facts as they present themselves.

When I did start to tell people I had MS, it usually elicits two responses. The first is along the lines of “oh shit” or “chr*st” or words to that effect. These responders are generally the ones that had the same negative exposure to MS that I’d had. The other typical response was a complete surprise to me. It’s along the lines of “my xx has MS” or “I have MS too” or “I know a couple of people with MS”. I did not expect this. Perhaps I was vain to think I was the only one!! It’s estimated that about 100,000 people have MS in the UK in 2016, while the figure for epilepsy is 500,000. It’s mainly for that reason that I was so surprised just how many people who I know and see regularly, have firsthand experience of living with MS or know someone who does. Given there are 5-times as many people with epilepsy than with MS, I’d have thought I’d know more people with exposure to epilepsy.

Does this mean anything? Does it mean there is less stigma attached to MS and so people are more likely to admit they either have the disease or know someone who does? Or does it mean that people with epilepsy are less likely to acknowledge their condition, especially if it’s well controlled? I don’t know the answer. I find it fascinating though.

The first person to be “officially” diagnosed as having MS – albeit posthumously – was Augustus d’Este, the grandson of The Mad King, George III. Although he wasn’t diagnosed during his lifetime, the diaries that he kept detailing his symptoms allowed for the diagnosis to be made. He kept diaries of his condition for 22 years, with the final entry being made 2 years before his death in 1848. However, the disease can be traced back to the 14th century to Saint Lidwina of Schiedam Although she died in 1433, historical texts tell of difficulties in walking, pains in her teeth and terrible headaches. This gave rise to the probability she suffered from MS. However, epilepsy has been documented as far back as 400BC with Hippocrates, no less, dismissing epilepsy as being no more sacred than other diseases in response to the belief at the time that epilepsy or the falling sickness was some kind of supernatural affliction.

There are long lists of famous people who have lived or do live with epilepsy. Bonaparte, Julius Ceasar, Dostoyevsky, Alexander the Great, Lewis Carroll and Prince to name just a few. Yet, I can’t find a similar list stretching through the ages for MS. The lists for those suffering MS seems limited to those currently living with the disease or those, such as Ms du Pre who have passed relatively recently.

I find the differences and similarities between MS and Epilepsy absolutely fascinating. The stigmas, the discussions and the history of both diseases being a source of both wonderment and inspiration.

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MS, Epilepsy and Cooking…

There has been carnage in Kirsty’s kitchen the past couple of weeks! I have made a few conscious decisions based on my health situation and it’s time to follow through.

Those who know me well, know I like my food. I enjoy my food and I prefer it with either coffee or wine. Yet, for the sake of my health and to feel like I have a modicum of control over my body, I have chosen to change my lifestyle and that includes reviewing my diet.

I have decided that I am going to switch up my previous carnivore ways and move toward a wholefood, plant-based eating plan. In case you’re wondering, this means no meat, no fish, no dairy and no eggs. Why? Why? Why? I hear you cry (unless of course, you’re already eating this way and are whoop, whoop, whooping instead)! Let me explain…

Just a couple of weeks ago, I was delivered news that put my world on it’s head. In all honesty, I was (& probably still am) devastated by the news that I had MS. Brave public face aside, I was/am crushed. All I could see were dashed dreams & tattered hopes. But, I chose me. I’ve decided not to admit defeat to a disease. I’ve resolved to do what I can do to make positive changes in order to have the strength to meet the challenges ahead, head on. One of the few aspects of life I can change is what I eat. My brain does have an input (think cravings) but it also desperately needs proper fuel to fight disease.

So, for me, moving toward a wholefood, plant-based way of eating is a way of having some control and an attempt to make myself feel better and stronger. The benefit to animals and the environment, I have to admit, are secondary in my thinking at the moment. This is all about me, me, me. I’ve known for quite a while now that my lifestyle didn’t really do me any favours, so regardless of whether the changes to my diet and the fact I’m working out with Edinburgh Fitness Solutions have any affect on my neurological afflictions, they should have a hugely positive impact on how I feel in myself. 

So that’s the “why”. The “how” is where I’m at!!

Changing a long-standing habit isn’t easy. Especially if, like me, you find it a struggle to “give things up”. So, I decided that I’m going to do things a little differently. This is where it is useful that I’m doing this for myself and not because I’ve been told to by any medical professional. As far as I understand, there is no proven way to eat yourself out of MS. So, that gives me both a comfort blanket and a safety net. It also means I don’t have to give up habits overnight. I’ve done my research and I’ve decided that for me, my body, my lifestyle and my health, trying a wholefood, plant-based way of eating could be beneficial. There is no guarantee that it would work for everyone, but I want to know if it will work for me. So, I’ve been transitioning.

I’ve sought out and spoken to people who choose to be vegan (yes, that’s the generic label), to find out their experiences and get any hints and tips. I’ve done some research and am fully aware that being vegan doesn’t automatically make you healthy. And that’s why I’m also reducing the amount of processed foods I eat and why chaotic carnage reigns supreme in my kitchen! One of the people I spoke to advised me not to think of it as giving up certain foods (cheese, milk & eggs being my biggest worry) but to regard it as an opportunity to try new flavours, textures and foods. That way, you will be less likely to feel deprived and that you’re somehow missing out. This is working for me. 

So, I’ve been going through this transition for about 3 weeks now. It’s going well, I think. I’m rediscovering my taste buds and some foods that I previously decided I didn’t like, I’m finding that actually when I try them, they’re not so bad. Meat and fish have been the easiest to let go of. The meat surprised me, as I thought of my self as a major carnivore! Cheese was a little more of a struggle, but through trial and error I’ve found an alternate that I can happily live with. Milk in my tea – wow. Tough!! Coffee, if it’s good quality, I can happily drink black, but tea? No way. Tea with soya milk? Bleurgh! Tea with oatmilk? No way Jose! Tea with hemp milk? Not a chance! Tea with coconut milk? Like hell!! Black tea? Well I’m getting there. I’m finding that rooibus is working black and my favourite, Earl Grey, if it’s good quality and bizarrely decaf, then yes, I can do that.

Most folks don’t know that I’m moving toward this new way of eating. I’m not being evangelical about it (there was no way I was missing out on a surprise Afternoon Cream Tea on Saturday) but the more people find out I’m choosing this way to eat, and the more eateries I discover to cater for this way to eat, then all the better.

The last blog I wrote stated “I choose me”. I stand by this. I’m doing this for me. So far, most have been supportive and those that haven’t? Well that’s fine too.

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Still Standing…although…

…my knees are a bit wobbly!

In grand terms, I’m still trying to get my head around having Epilepsy and MS.

It took me quite a while to accept epilepsy into my life (and into the lives of those around me), I know it will be the same for MS. Yet, it somehow feels like I have a bit more to lose now.

Frankly, today, yep I’m on a bit of a downer. The whole situation seems very overwhelming for me and I know it also is for my family. Although this is my blog and these are my thoughts and feelings, I am extremely aware that it’s not just me this affects. I have the luxury of being able to get my thoughts out in writing, as I know me better than most and I know I would struggle to successfully say what I am able to write. I don’t know why that is. Although, I suspect it’s because this is my chance to free-wheel, as it were!! I get to write without having to clarify, justify or question what I’m feeling.

Don’t get me wrong. I want people to ask me questions. They often ask about things I haven’t thought of for myself and they often help me see with fresh eyes. Sometimes though, the questions I don’t have answers for scare the living bejesus out of me. It often feels like it’s all “me, me, me,” and do you know what, sometimes it is!! That said though, I know there is no way at all I’d be standing on wobbly knees if it weren’t for the people around me. My family aside, my friends and loved ones are what makes this situation bearable. The ones who call me out on my crap (Sarah – I’m thinking about you especially here :0) ) because they care. The ones who are brutally honest with me and can deliver that honesty with just the right amount of tenderness, keep me strong. The ones who just allow me to be me whether I’m wallowing or moving mountains, without saying a word. The ones who go out for lunch or dinner with me, knowing there is a good chance I’m going to talk/moan about my situation. The ones who sit next to me while we watch tv. The ones who push me on in the gym. The ones who make me laugh when I think I will never laugh again. The ones who let me cry and then ask if I’m “done now, because I’m missing the rugby”. All of them, serve to remind me that I’m not alone and I can do “this”.

So wobbly knees to hell with you!! Hmm – except after a million squats, then you can be as shaky as you want!! I’m changing my life to adapt to that which I need to adapt to. Some of you may not recognise me when I’m done, but that’s ok. Some may choose not to stand with me anymore, but that’s their choice. Others may decide to walk with me, though they’ve never travelled my path, that would be brilliant and I thank them. 

I choose to accept there will always be birdshits on the path of life. I choose to remember that if I stick my head in the sand, I leave my ass exposed. I choose to recognise that if I don’t make decisions about my life, then someone else will do it for me. 

I choose me.

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Epilepsy and Labels…

There is a difference between having something and being something. I have green eyes; I’m not a green eye. I have a broken arm; I’m not a broken arm. I have epilepsy; I’m not epilepsy. There is a huge difference between having and being, that said, I do use the phrase “I am epileptic”. I also use the phrase “I am brunette”. For some reason that doesn’t seem to conjure up the same negative connotations that announcing I am epileptic does. Why is that?

There is an entire minefield out there called “political correctness”. It’s huge. There is such an enormous amount of pressure to use the correct terminology to refer to certain conditions that it’s a wonder anyone talks about them at all! Sometimes it makes me really angry that there is more discussion about whether someone “is epileptic” or “has epilepsy” than there is about treatments. And it seems to change every 5 minutes. No-one is blind anymore, they are “visually impaired” or should that be “visually challenged”? I don’t know! Lord forbid you call anyone disabled! Yet, when I was growing up, there was absolutely nothing wrong with calling a person what they were. Nowadays, though, it’s a label apparently and we can’t be seen to be labelling people!

I’m not sure how calling a person what they are, is labelling them. Why does it have to be negative? I am brunette – call me brunette. I am epileptic – call me epileptic. I’m not offended. Why should I be? I am, after all, a brunette epileptic!! Is the fear of getting the term wrong, actually contributing to the lack of open discussion about certain diseases? Are we so scared of saying the wrong thing that we say nothing at all? I don’t want to use the wrong “label” so rather than talking to you about your disease, condition, disability, challenge (whatever!) I just won’t say anything at all. Then that will save me getting embarrassed and you getting riled up because I may have used a term that was perfectly acceptable in the ‘70s, ‘80s and beyond but is shunned today.

I would much rather someone talked to me about epilepsy and acknowledged it, than kept quiet because they don’t want to offend me by calling me epileptic. Maybe I’m missing some huge point here. And I open myself up to correction.

Being epileptic is part of me, sometimes it’s a huge part of me and sometimes it’s not. 

To my simplistic mind, there is no offence in either of those statements. However, in some quarters the first statement is a label and we don’t want to label people. Who decides that? I know that I am over-simplifying things a little. I recognise that people are people and everyone is entitled to live a label-free life. What I don’t seem to be understanding is what makes a label negative, if the statement is true? I am not the sum total of my labels, but what if we stop calling them labels (to me, a label is a physical thing that is attached to another physical thing) and start calling them adjectives. There is nothing wrong with adjectives is there? Now, don’t get me wrong, I absolutely understand that there are some adjectives out there, that are utterly offensive and I want no part of them; but describing me using a different form (i.e. changing the ending) of the name of my disease, just isn’t offensive in my mind.

I seem to be ranting. I would much rather people talked about epilepsy openly in the same way we can talk about flu. Ignorance is far from bliss. I want to talk about epilepsy. I want the whole world to realise its existence and for those living with epilepsy to be able to talk about their experiences without fear of rejection. I sometimes find myself trying to choose a different term to describe my own life with epilepsy because I don’t want to offend anyone out there by having them think that I’m (negatively) labelling them. If I call you epileptic, then it’s not meant to be negative. Calling someone something, doesn’t make them that thing. You can call me a dog. It doesn’t make me a dog. It’s only negative, if I allow it to be negative.

Epilepsy is part of my life. It is a consideration in everything I do. I wrote in my last post about having wobbles. Yes, I have them. After reading the post, someone got in touch with me and assumed that my work trip was off. That I wouldn’t be going. I replied that of course I’m going, I mean why wouldn’t I be? I don’t think they got my post at all. My post was trying to demonstrate that I had a wobble. That I thought I was going to have a fit (ok seizure!) even though common sense was dictating that I wasn’t. I’d bumped my head is all. I was trying to demonstrate that while I do believe that having epilepsy is not the end of the world, I’m not always positive about it and that it does scare me. When I’m having a wobble, the last thing I want to think about, is how to describe my feelings in politically correct terms that won’t offend the casual reader or another person who is living with epilepsy. I want to be able to pour out my feelings raw and un-censored. Being permanently politically correct does not lend itself well to this. I had to make a decision. A decision that every human being has to make for themselves. I decided that I had to be true to myself when I began this blog. I decided that it has to be a true representation of how epilepsy makes ME feel. In order to do that, I have to use words and phrases that I use and I have to hope that this blog reaches people still holding the intentions that are behind the words I use. I guess only you, the reader, can be the judge of that.

Writing this blog has helped my confidence significantly. Epilepsy has not played a starring a role in my battles with low confidence, it plays its part though. My confidence was ruined long before I was diagnosed with it. But writing this blog helps me to put things straight in my own mind. Reaching out to others to help raise awareness about epilepsy and its effects, helps me enormously. So, please do not let words and the misperception of a negative label prevent discussion about epilepsy. Talking is good. It’s a way to raise positive awareness about epilepsy. It’s a way to dispel myth and hammer home a firm belief that a diagnosis of epilepsy does not and should not signify the end of life as we know it. All of us with epilepsy have to find a route through it. Talking about it, sharing experiences – good and bad – and generally being unafraid to acknowledge its existence is a great way to move forward.

My name is Kirsty and I am epileptic.

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Epilepsy and Firsts…

So, it was Mr Marshall’s English Literature class and I was 15 yrs old. It was the first day that I did my paper-round. It was first day I had a seizure. The first day of the longest battle of my life. The first day of the rest of my life.

My only memory of that inaugural day of my life, is being in the ambulance chair, being wheeled backwards into the ambulance and seeing a sea of faces at the window of the assembly hall. All clamouring to see who is being taken away in an ambulance. That’s all I can actually remember of that day. Apparently, I stood up in the middle of the class, made strange moaning sounds and fell to the floor to begin the battle that rages in my brain every single day. Other teachers were called, the ambulance was called, my mother was called and my 17yr old brother was presented with my shoes, schoolbag and the news I’d been rushed to hospital. At that stage in our status of being siblings, we weren’t close. We were both teens and I didn’t realise how much I adored my big brother until he left for university a year or two later. That’s by-the-by, knowing him as I do, I can only imagine how scared and upset he must have been that day. People, other than me, being in possession of my shoes and bag has become a recurring theme in my life.

I’ve never, ever asked anyone how they felt that day. Not my family, not my friends, not the dog. No-one. And I’ve only ever told the dog how I actually felt. Animals can sense epilepsy. Another dog proved that to me in my early twenties, I guess I’ll get to that. I got a fantastic Get Well Soon card signed by classmates and teachers. I still have it 27 years later. I sometimes look at it, but I don’t really know why I kept it. I’ve been very open about my epilepsy for much of my battle, but it’s only very recently that I’ve started being truly honest about it. With others and with myself.

My openness about having epilepsy began because it was a way that I could help reduce how much others worried about me. It was a way I could talk about having epilepsy but keep it practical. What to do, what not to do etc etc. It evolved into poking fun at myself and the condition. It was a way of body-swerving my feelings, my emotions and it helps soothe others. It also helps ensure that those around me are less likely to panic if I start to seize, because they know it’s not outwith the realms of normality for me. I’ve lived with the threat of having a seizure for 42 years, blissfully unaware of that fact for 15 of them. I’ve lived with the consequences of having epilepsy for 27 years. I have the physical scars, but as with most scars, the deepest ones are emotional. I hate having epilepsy.

I’d hand my brain back and ask for a refund if I could. I can’t. Firstly, because I wouldn’t know where to return it and secondly because it may be damaged, but it’s bloody good at other stuff. The fact remains, parts of my brain malfunction. I know the terror that comes with that. I feel the terror. I know the terror that comes with the knowledge that having epilepsy could one day kill me. I spend chunks of my life terrified of my brain. There are times I cry myself to sleep through the sheer frustration of having epilepsy and being under the influence of it. I can control many things in my life, but not my own brain. My brain controls my brain; how mind-blowing is that! My brain does this to me, it causes me so much physical pain and then compounds it by giving me the ability to feel emotional pain about it too! How is that fair?? Well, it’s not fair. Plain and simple.

So, it isn’t fair. But I still have choices. I can give over my life to fear, depression, anger, bitterness, terror, hatred, self-pity, self-hatred, helplessness, loneliness, frustration or I can acknowledge that having epilepsy causes me to experience all of those emotions, but that life is worth getting up each day and carrying on for. Giving up is the easier choice. I feel like doing just that on a regular basis. After my latest episode, I wanted to give up. I was so tired, not just physically, but mentally exhausted by the battle. I was ready to let epilepsy win the war. Other parts of my life were causing me stress. People were judging me on things they knew nothing about. That stress is one of the factors that put me in hospital that day, because my epileptic brain gets stressed out by stress! An apparently misplaced sense of loyalty prevents me from dealing with the cause of that stress, but I sense for the sake of my health that is going to have to change. Anyway, I digress. Sort of. Epilepsy was taking the upper-hand. The depression was deep, inky black and consuming me. Still I smiled and joked because that made others feel better and less afraid. I could feel my being, my inner-me, my soul if you like, dying. The will to keep going was seeping out of every pore in my skin. Then the doctors deemed me fit to go home (love the irony of the use of that 3-letter word in the medical world).

Physically I was improving. Emotionally I was dying. I went home. Closed the front door after my parents left. I’m alone. No-one to make me a cup of tea. Did that mean I wasn’t going to have a cup of tea? No, it meant I was going to get off the sofa, go into the kitchen and make one. I chose to make tea. I chose to have a shower and get into my pjs. I chose to watch crappy tv. I chose to eat chocolate. I chose to keep going. Yes, I felt scared, depressed, deflated, exhausted and downright pissed off that this was happening to me again. And maybe it was just sheer habit that caused me to keep going, I’m not 100% sure about that. I know I didn’t have some kind of glorious epiphany. But be it consciously or sub-consciously I lifted my chin and pointed it forward. I find myself here, now, writing this to help me and to help, hopefully, others see that there is a choice. There is always a choice.

Today is the first day of the rest of my life.