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.


What next…?

It gets to the stage when you seriously question just how many times you can pick yourself back up.

10 days ago I was travelling home after spending the weekend with my oldest friend. My parents had kindly picked me up and we were driving north. A few miles outside of Edinburgh, I started to have a seizure in the back seat of the car. My head banged hard multiple times off the car door. I was taken straight to A&E where it took some time to persuade me to leave the car and when I finally did I started the second of the seizures. This time I thrashed on the gurney. Truthfully, I don’t remember any of this. I suspect the story I’ve been told has been softened up a little. I did spend 3 days in hospital. I did have 3 seizures and I did give myself a small bleed in my brain as proved by a CT Scan that I don’t remember having.

I was discharged from hospital a week ago. I don’t remember too much about any of that, but I do remember starting to feel really unwell as time was going on. When it became a bit more apparent to me that there was something not quite right with my face, I called NHS24 & was given an appointment at a hospital.

Long story, short. I have been diagnosed with Bell’s Palsy. Half my face is paralysed; one eye doesn’t close; my ears are constantly ringing and yet there is a sense of deafness in my right ear. I can’t speak very well. I can’t eat very well. And without putting too fine a point on it, I’m pretty scared.

Apparently, there isn’t really anything that can be done for Bell’s Palsy. There is a small chance that steroids can help if they are given soon enough after initial diagnosis, so I am currently on a high dose of them, but there are no guarantees. I’ve been told that it’s hard to go out with my face looking the way it does – reassuring! I’ve also been told to try to do it as soon as possible – terrifying! I’ve been for more scans, so perhaps that counts as being in public?! I’ve also got another appointment tomorrow, so maybe that is good enough to reinforce the “get out there” mentality?

A few weeks ago, I wrote about wondering whether I’d done any of “this” to myself. Here I am again. Where to go from here? At what point do I get to feel sorry for myself without inviting the comments about being a victim? Surely, it’s ok to feel a bit hard done by, no?

Epilepsy. MS. Depression. Bell’s Palsy.

Can that not please be enough? Please! Apart from the headaches and the pain, I feel a bizarre kind of emptiness. A sort of “what’s the point”? I don’t quite know the purpose of these struggles. What am I supposed to be learning? Isn’t there an Idiots Guide to… I can read instead? Who the hell have I upset so much that these afflictions are my punishment?

Ah, here they come. The tears. I can blink them away from one eye, but the other just streams. I know it’s going to leave my eye red, sore and swollen. Yet, there is nothing I can do about it. Just something else, that I have no option but to put up with. When does it end? When will it end? What can I do to make this all go away?

Yep, feeling sorry for myself now. Who cares? I’m not strong enough to take this and if I want to dissolve into buckets of tears then where is the harm in that? I’m not hurting anyone by doing that and maybe I just need to know that it’s ok not to be ok. Right? We get told that don’t we? That we don’t have to be strong all the time and that it’s ok to be scared sometimes?

So, here I am. Another affliction I can’t control. Another solitary journey. Another route I can’t explain to another and more feelings of inadequacy.

I don’t know how many more times I can pick myself back up.


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!


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.


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.


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.


Epilepsy and Solitude…

I’m worn out. Had a touch of flu, I think, and basically spent the last 4 days in bed. I may well have missed summer…
It’s been a while since I’ve written! Thank the lord for small mercies I hear you all cry! Yet, it’s back to the hospital for round two of sleep-related tests. So, even while life goes on and all is quiet, epilepsy ticks away in the background. Always.
Since someone took me seriously about how badly my sleep was affecting me, things have turned around a little. There is a strong chance that the lack of sleep was mainly down to being in a habit. As with all habits, the more you practice the better you get! I became an expert at not sleeping. The more worried about it I got, the worse it got. Then no-one really believed me – you don’t look like you got no sleep etc. Well, doh, it’s called make-up! Then, someone in the medical profession, took me seriously. In a way, it felt like a weight had been lifted and that someone was going to help me deal with the consequences of no sleep and at the same time investigate the reasons why I was sleep-shy.
Well the world didn’t get better overnight! After numerous forms and tests and a lot of habits to be broken, I have a feeling that things are getting better. I do sleep better. I know that for sure. I still have to go back to hospital, but I don’t feel like I’m going to get the news that means it actually is my medication causing the issues, or that I do have a form of sleep apnoea. It’s a strange feeling to be confident going to hospital. It’s certainly not one I’m used to.
I worked in the library service for a number of years before I went travelling. I love books. I love everything about them. If I’ve said this before, then I don’t apologise! Books hold knowledge, beauty, art, answers, questions and escapism. They have it all. And unlike the computer chip, usb stick or iPad; books have a delicious aroma that’s musty and fresh all at once. They’re tactile and forgiving, fragile yet strong. Hold a book in your hands and you can be transported on a sensory adventure in a way that I’ve certainly never been able to experience via an electronic version.
So, it’s a Tuesday. I’m working in an inner-city library in a poor, very poor part of the city. I’m surrounded by beloved books and I decided to rearrange a few shelves-worth as I collapse. I was not really thinking about the Dewey Decimal Classification system. And oh what a racket I must have been making….ssshhhhh!! I wasn’t alone in the library, but I could have been. There wasn’t much that could have been stolen, paperbacks are not really a strong currency. There was probably a few pounds in the cash register, but paying fines wasn’t the highest priority in the area. Yet, it was mentioned on more than one occasion that I wasn’t safe to be left alone. I didn’t really like that.
I remember coming to, lying on the floor of the library. Not a pleasant place to be. Not in that particular library anyway! It turned out the library had only been open a few minutes when I started to fit and there were no patrons in at the time! So, the library was closed until the ambulance came and took me away. I really didn’t want to go. The paramedics didn’t really want to leave their ambulance unattended for long in that particular area of town. Isn’t that a sad fact? Anyway, carted off I was. Ambulance intact, me less so.
Occasionally, I think about being alone and being epileptic. Sometimes it crossed my mind that they weren’t so much bothered about me, as about the contents of the library. Maybe that’s grossly unfair, but it is what goes through my mind sometimes. I worked in a bar for a very long time and it was never even mentioned that it could be an issue; me, alone, in a bar, surrounded by glasses, bottles and money. I digress. I do that often too! So, back to being alone and being epileptic. I’m lucky. I don’t require round-the-clock care, I don’t need to wear a helmet and I don’t seize multiple times a day. That, in my opinion, gives me choices and options on how to live my life. I took the decision fairly early on in my epileptic life that I wasn’t going to be a victim to it. It was and still is, the best choice for me. Oh how I wish I could have made better decision on other parts of my life! Hmm, maybe we’ll get to that later! I chose to not allow epilepsy to rule my life. It isn’t always the easy option believe it or not! There are times, probably more times, than I can even admit to, when it would be sooooo much easier to just conform. To just stay in bed every single day, in a shared house or a hospital, or god-forbid, at my parents place! To not live. It would be easier, sometimes, to hide away. Stay as long as possible in that hospital bed after an episode. Be utterly truthful as to how difficult it can be to be alone. I actually quite enjoy my own company though. I can’t stand being fussed over and being treated like a child. I quite like sitting in a quiet corner, yes, you’ve guessed it, with a book! I flatly refuse to allow the fear of epilepsy take that away from me. I enjoy, sometimes even crave, solitude.
When I’m unwell, I do get scared. Actually, scared is probably too strong a word. I get a little fearful. I know when my epilepsy defences are compromised. And I know that when I’m not feeling well, that’s when the cracks can really appear. I also know, through experience, that just because I’m not feeling well, doesn’t mean that I definitely will have a fit, but it’s the time when I’m most aware of how I’m feeling, whether my reactions are slowing because of the illness or is it because of the epilepsy…? It’s a difficult path to walk sometimes. But, I choose that. I accept that I may be alone when something happens. I accept all that comes with that. In choosing that, I also accept and take full responsibility for my choices and my life. My hand isn’t forced. It would be easy to give up and exist as others would have me do.
Life is choice. I wonder if my GGG Agnes felt the same way as I do and if she was able to act on it. I’m forever grateful that I am in a position to choose.


Epilepsy and Hope renewed…

I got a letter from the hospital today. When I saw the envelope I didn’t want to open it because I thought it was just going to be the written version of last week’s session. It wasn’t. It was an appointment with the person at the hospital who can perhaps help me find the link between my epilepsy and my sleeping problems! Yay!

Year-1. Renewed hope. A tweak in attitude. The continued support of those around me. New beginnings. In order to have the rainbow, you need to have the rain. I can’t quite remember who said that (memory issues are still abundant!), but I have the feeling it was Dolly Parton! Feel free to correct me if I’m wrong! The point being that, to truly appreciate joy, experience wonder, or find peace, then having endured the opposite is what makes that possible. Of course, you can feel all of those things anyway, but the experience is sweeter, sharper, and more potent if you’ve experienced the opposite. So, should we be actively looking for pain and problems??

I believe, in the course of living life, pain and problems present themselves naturally as time passes. How we choose to deal with the issues is up to the individual. That said, our own actions occasionally (often) exacerbate the issues that knock on the door to our life. I haven’t always viewed my life, life itself, that way. It’s often easier to push responsibility onto another, either actively or passively, rather than shoulder the consequences or confront the situation. I know I’ve done that in the past. I know there are certain situations in my present that I’m struggling to confront for fear of the consequences. But, this is Year-1. The past is gone, the future isn’t promised and all there is, is the present.

When I think about my childhood, I think about my Gran. Ever-giving. My brother and I would spend a few weeks in the summer with her during school holidays. She took us to Portobello beach, the zoo, the castle and gave us endless stories to laugh about well into our adulthood. She would knit us jerseys that implied she thought we had pea-sized heads and arms like an orangutan! We often talk about Wee-Eenie. She was hospitalised after a stroke in 1998. My brother and I visited her every single day the entire time she was in hospital. He would feed her, I would make sure she always had clean clothes to wear and would read to her. Towards the end, she didn’t really know who we were. There was not one day that one or other of us, or both of us were not there. It wasn’t easy. She had provided for us unconditionally; I had lived with her when I first moved to Scotland. It was the very least we could do. The nurses were amazing in the hospital, they got to know us and they pretty much allowed us to come and go as we pleased. I’m grateful for that. Her main source of nourishment was given to her through a tube. The day came when the decision had to be made as to whether food should be withdrawn. My Dad made the decision that it should be, over the phone with the hospital, and my brother and I went together to formally request that the feeding tubes be withdrawn. The hospital had assured my dad that there would be someone at the hospital, a nurse or doctor that we knew, who would be there to see us and who would explain the procedures. That’s not quite what happened.

When we arrived on the ward, there was not one nurse or doctor there who either of us had seen before. We had to explain who we were and why we were there at that time. We stood next to my Gran’s bed. Without a word of warning, the nurse pulled the tubes out of my Gran and just walked away. My brother said to me “I can’t be here” and bolted from the hospital. He never went back. We both felt like we killed her. I stayed, but I understand why he didn’t. That was a Tuesday evening. She wasn’t lucid very often, but she did have moments. She said to me one evening, that she would see her birthday, “but I’ll not see past it”. The following Saturday at 5.30am the hospital phoned me to say she’d had a bad night and I went straight to the hospital. Wee-Eenie died on October 17th 1998. Her 85th Birthday.

I often wonder if my Gran is looking down on me and is proud of what she sees. It is my Gran’s side of the family that possess the epilepsy gene. One of my cousins had a seizure when she was a teenager, but nothing since and 1 episode is not enough to be classified as epilepsy. To my knowledge, I’m the only one of my family that has/is displaying the telltale signs of epilepsy. I’m the special one…When I reflect on the time I knew my Gran, the lady I remember was one with a great sense of humour, a great giggle, a ready smile and a generous heart. The memories of her make my soul smile.

My Year-1 is going very well so far. I’ve made some tweaks. I feel hope. I feel a sense of connection to my present that has been absent a long time. I feel joy in my heart. We are each of us responsible for our own happiness. It is not the job of someone else to make me happy. It is up to me to actively seek out that which brings me joy and peace. I know what those things/people are likely to be because I’ve experienced the opposite. The pain and struggle of the past, will make the joy of the present and the plans for a future not promised, sweeter.


Epilepsy and Year-1

So, it begins again. 2015 will see the battle of the meds. Drugs fight dirty.

Today saw the first visit of the year to my consultant. Every time I see him, I leave feeling worse than when I arrived. He is an odious little man. He has no answers and he almost seems proud of that fact. I want answers, of course I do. Do I think there is an immediate answer for every ailment or symptom? Of course I don’t. What I do expect is a commitment to try to find answers and try to help me manage my condition successfully. Is that too much to ask? I left the hospital feeling despondent, hopeless and fearful. The tears began on the bus.

2015. What will it bring? Well, I know now it’s going to bring changes to medication. I know that the weaning off process will begin soon and the introduction of something different will begin. It’s not a short hop, it’s a long haul. It’s a battle I’ve fought many times and it’s a battle that’s brought me to my knees many times. But, who knows, maybe this time will be different. Maybe. It always looks like rain, especially if you look at the clouds. I heard this somewhere a while back It’s true though, don’t you think?

Epilepsy. It’s a piece of my jigsaw. It’s woven into the fabric of my life. It’s a special thread. All the other threads are bound to it. Sometimes the strand is thin and easily supported by the other threads and sometimes the strand is coarse and it’s hard to hold it in place. 2015 will be an exercise of pulling the threads of my life into position to support the rough battle that’s coming. I’ve done it before and I’ll do it again.

A new year should bring new hope. It doesn’t matter when that new year starts, it doesn’t have to be January 1st. After all, as I’ve said before time doesn’t exist, only timepieces. So, as the dark of what we call night deepens, it will without fail, be followed by a period of light. So it is with life. We only know joy because we’ve lived through pain. We know peace because we’ve experienced struggle. And so it will be in 2015.

My mind and body have been through a lot. It’s the same for most people. There are few of us in this life who have lived untouched by struggles of some description. I owe it to my mind and body to fight the best I can for them. I have spent a long time seemingly putting my life into the hands of others. Making them responsible for my health. I always thought that I was doing the best I could for myself, but perhaps that isn’t true. Perhaps I haven’t shouldered enough of the responsibility for the shape I’m in?

This isn’t 2015. This is year-1. It didn’t start 8 days ago, it begins right now. The medical profession aren’t responsible for my health, I am. Perhaps, he is a repulsive little man, but I don’t know what battles the consultant is fighting. I have no control over him, I can only steer myself. My brain is special. It malfunctions and yet it keeps going. It proves its power multiple times a day, every single day and I feel if the electricity could be harnessed I could probably light up the dark. Funny really, because that’s all I’ve ever wanted to do.

Year-1 is hope renewed. It’s accepting the inevitable while participating in the process. The battle is inevitable, but I can actively influence how I choose to feel about it. What is this thing called life if we consciously choose to let it unfold as it will without putting the rudder in the water and trying to steer it? Life. It’s an attitude. I want my year-1 to be a fresh start. My epilepsy is hard to control, I’ve always known that. The fatigue is something relatively new and just as I’ve had to learn to live side-by-side with the falling sickness, I have to learn to manage the fatigue. Simple.

I hope your year-1 is as special as I’m determined to make mine.

Love it
Instigate it
Feel it
Enjoy it




Epilepsy and Hope…

Two months ago, one of my inner-circle was in a job, in her own flat, surrounded by friends who love her and living her life. Fast-forward to today. She’s out of work, she’s rented out her flat, she’s still surrounded by friends and family who love her and she’s about to embark on the next chapter of her life. She’s bought the ticket and she’s taking herself off travelling for the next year. She’s terrified and excited. She’s going to have the best time of her life. She will see friends she hasn’t seen in a long time and she will experience things that most will never. She’s brave, she’s hopeful and she’s pressed the f*ck-it button and she’s doing it. Personally, I’m absolutely delighted for her. I absolutely believe it really will be the best thing she ever does. The door to her office closed behind her but the hundreds of doors to a thousand different paths, experiences and people have just swung open, ready to accept her and her backpack.

I hope she experiences the phenomenal, she deserves to. I hope she reinvigorates the friendships with those she hasn’t seen in too long. I hope she takes all that she is and shares it with the world. The world will then be a richer place. The actions of this lady, give me hope.

Hope. A four-letter word. It’s an amazing feeling to experience. But, sometimes hope just isn’t enough. Sometimes, hope falls just a tad short. Hope is a good thing. But hope needs a helping hand, it’s not enough on its own. Hope needs action to become reality. Hope needs what my friend is doing. Hope needs that bravery and the willingness to try, to make an effort. That which you hope for can be that which you live (another four-letter word) but not without effort.

The actions of others gives me hope for a great deal of things, from the mundane to the sublime. But hope without action is destined to remain forever a wish. Aspects of our life are sometimes outwith our control, having epilepsy, having cancer, being hit by a drunk-driver for example. We can hope that these things don’t happen to us, but there is little we can do to prevent it. Hope, I think, in this case is directed at the actions of others. I’m not a scientist, but the actions of scientists to find a cure for the currently incurable, gives me incredible hope. I hope that the action of a drunken person handing their keys to a sober friend means one less devastating accident.

Having epilepsy gives me cause to live on hope. I hope that I don’t have a seizure today, I can’t fully control it, but I have done all I can in terms of taking the advice of doctors. I hope that if I should have a seizure, I don’t hurt myself badly or anyone else at all! I hope I can find it in me to live today as well as I can. I hope I don’t give myself up completely to epilepsy, depression, wine or chocolate. I hope I can find the courage to take action to turn my hopes into a reality. I hope I can find it in me to press as many of the f*ck-it buttons between me and my dreams as I can. I hope I can give hope to those who are struggling. I hope that I can be the friend, the relation, the partner that I want to be. I hope I am the friend, the relation, the partner that I think I am. I hope I can find meaning in having epilepsy, I hope I can continue to live alongside it and I hope that I can help find a route through it and share that with others.

We are on this earth for a nanosecond. 80 human years if we’re lucky, that equates to the blink of the eyelid of time. Some of us will be able to achieve greatness that’s recognised by millions in our lifetime and by millions more after we’re gone. Others of us will be the action that allows the greatness of others to become more than hope. The people who find the cure for cancer are driven by the cancer-sufferers’ hope to find the solution. The names of those people will be written down and celebrated for decades to come. The names of the hopeful will be forgotten by all except those who love them or were touched by their hope, but without them there could be no cure. The life of the celebrated is worth no more than the life of the hopeful.

We are all here on earth for such a short time, that it makes no sense not to be hopeful. So live with hope in your heart, action on your mind and be happy. Life’s too short and fragile.