2

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.

0

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.

0

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.

0

Epilepsy and November…

You are not alone. 
It doesn’t always seem like that though. When that little bubble of fear is swirling in the pit of my stomach and I can’t explain it away to myself, let alone someone else. When I don’t know if I just feel a little under the weather or if it’s the pre-cursor to an episode. When my head is pounding like a jackhammer and I don’t know if I have a headache or if it’s something more sinister. When I wake up feeling a little bit confused and a wave of panic courses through me because the first thought isn’t that I’m just waking from a really deep slumber but is “I’ve had a fit”. When I simply just don’t feel right. These are some of the times I feel really alone.
It’s because I can’t explain the feelings. I can’t put them in to words that make the slightest bit of sense. If it’s my automatic thought that I must be going to fit, then it stands to reason that it will be someone else’s too. So, I usually say nothing. Sometimes I’ll tell someone that I just don’t feel “right” and that maybe they could just keep an eye out for me. Sometimes I say that and, to date, every time I have said that, nothing has happened. Weird. Maybe I should say it every day! So, generally, I try to swallow the feelings down. I try to change the road my thoughts are going down and I try to ignore how I’m feeling.
It’s isolating though. A lot of the time I don’t tell anyone else how I’m feeling because I don’t want them to worry. Because I know that 9-times out of 10, if I say I’m not feeling ok then I will be fine. Then there are the times that I feel like I’m making a big deal out of nothing and that the fleeting expression that just crossed the face of the person I’m telling is proof of that. Sometimes I’m trying so hard to suppress the feelings that I forget I’m actually allowed to have them! 
Sometimes I think about all the feelings inside me that are left unexpressed. The little bundle of hope trying to clamber its way through the maze of fear, helplessness and isolation. Every now and then it stands on top of the negative and yells “I’m here” so loud that it’s impossible not to feel hopeful. Then, it’s as if that sneaky, writhing, mass of darkness just grabs it by the ankle and pulls it down again. Hope gets buried, but it’s always there.
Lately, the feelings I’ve long suppressed have been bursting out. Usually accompanied by floods of tears, usually at completely inappropriate times and never anything to do with my epilepsy! It’s like the feelings and thoughts that I’ve worked so hard to hide for so long have got together, merged into one and are tumbling out the only way they know how. If I won’t consciously release them, then they’re going to stage a mass breakout type thing!
It’s draining. It’s confusing. The flow can’t be stemmed and I’m haemorrhaging feelings! I was told when I was in my teens that I felt nothing, that ice water flowed through my veins. Oh, how I wish that were true. I was told early on in my epilepsy journey that I was “pathetic” when I expressed fear regarding my condition. The tears that had accompanied the confession were belittled. So, I suppressed them. That made me an ice-queen apparently. The whole damned if you do, damned if you don’t scenario. Now, decades later the ice has seemingly melted and is leaking out through my tear ducts! 
I guess the issue is, the fear, anxiety and untold pain regarding my epilepsy that was pushed in, isn’t exactly what’s coming out! In order to escape the confines of my mind, the feelings are latching on to any piece of negativity that finds its way into my head, however fleeting, and are working my mouth like a master puppeteer in order to be expressed. My feelings of isolation as a teen and young adult surrounding my epilepsy, long buried, are beginning to make themselves known, albeit they’ve morphed into something that seems unrecognisable to me.
Perhaps if I’d known I wasn’t alone all those years ago, then I’d be more in control of myself now. I sometimes feel like a hormonal teenager all over again because I can not rein in the tears of frustration and anger that are rampaging through me. I can not seem to find the appropriate words to express myself properly in situations that demand propriety. I keep hoping that today will be the day that I can get through without tears.
Epilepsy is experienced differently by each person who lives with it. But there are some elements to it that bind us together. Fear, hope, anxiety, helplessness and bruising are just some of the parts that can bring us together. I might not experience these the same way as you, but I do experience them and much more. I know now that I’m not alone. I know now that there are individuals, associations, forums, groups and societies out there that are standing with me. In my adult state, I know that for me, I just need someone to listen. They don’t need to say anything, they just need to listen. So I can say, out loud, that I don’t feel right without worrying how they are going to respond. For you, it might be different. It doesn’t matter if you need something different. What’s important, is knowing that you are not alone.
November is Epilepsy Awareness Month. So, wear a splash of purple and know you’re not alone.