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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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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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Jigsaws and New Beginnings…

Everyone is entitled to a second chance, right? A chance to pick back the pieces and build new connections? I think that has to be true. I don’t really know how I feel about that in the context of evil people, but right now, they don’t really concern me.

So this is the first kinda proper musing since I plucked up the courage to change what has worked for me – Epilepsy and … –  and turn it in a new direction. Those particular puzzle pieces worked beautifully for me, but now they aren’t so easy to push into place. It’s time to take a new chance in a new direction. This is something I’ve been procrastinating over for far too long.

Procrastination is something I do bloody brilliantly, even if I say so myself!! If I can put something off, I totally will. I’m not sure I even do it deliberately. I think all my latent fears and worries are so ingrained that they do it for me! So changing the way I write this blog, for example, it’s something I’ve turned over in my mind for a very long, long time. But I was worried about how it will be received? I mean, how could I go from writing about how one particular aspect of my life affects me, to writing about, well, how life affects me? That’s when it kinda dawned on me, that I’m being daft. Epilepsy is a part of my life, but it’s not my whole life and I was really writing about that anyway. So, what difference would it make to just change the titles of the blog posts?? That’s really it. Oh and spending hours trying to figure out how to make the new blog posts go on a different page! A tech-whizz, I am not! So, if you know how to keep the previous blog posts on one page and direct the new ones to the new page, please feel free to drop me a line – I’m clueless. What I did, finally, figure out is how to make the new posts go on a new page (categories rule!) but not how to stop them still appearing on the Epilepsy and … page. Heyho. Into each life, a little rain must pour – right?!

So, my jigsaw. I think most of the pieces are in the right place to date. Most of them. I know some of them aren’t sitting comfortably and so they will need to be unpicked. I don’t expect this to be something I find particularly easy to do, so I guess I’ll just have to take my time. The first thing I need to do is accept that they are in the wrong place. I can’t force it anymore. Forcing them, or rather forcing the actions that they represent, is becoming too draining. I know in my heart that they aren’t right, but making the changes seems too overwhelming, too hard and too downright scary! I do know, however, that those pieces need to be in a different part of my life. They need to be attached to the past. The pieces, I believe, are correct for my life, they have served a purpose, but they are not in the right place. Other elements in my jigsaw have built up around them and proved that, while at the time, it seemed like they were a perfect fit, they simply aren’t. I’ve spent a great deal of time and far too much energy pretending that they are.

There is a lot going on in the world right now. War, famine, new presidents, old leaderships, protests, acquiescence, ignorance and fear. The world seems like a more vulnerable place to me than it did even a just a couple of years ago. The feeling of a global hope is something that seems like a far-fetched fantasy right now. That’s my feeling. I watched the inauguration of the new President of the United States the other day. As I watched and tried to comprehend the speeches, I was struck by something entirely different. I don’t think it was my imagination, it very much seemed to me that there was a lady standing up there who simply did not want to be there. A lady who seemed completely terrified at the position she was occupying and one who firmly believed she shouldn’t be there and didn’t want to be associated with it. That lady finds herself standing next to POTUS. She stands next to her man, rightly, because she married him. But I kinda wonder if the reasons why she married him were running around her mind. Maybe she is waking up and thinking about her jigsaw and how the merry hell it ever came to this! She will forever now, be compared to the ladies that have come before her. And probably to the ones that come after her too. Her position, to me, seemed even more painful because of the speech the outgoing POTUS made about his lady wife taking a role she didn’t ask for and making it her own. I found myself wondering how the present FLOTUS is going to do that, or even if she will. I felt for that lady standing up there. That lady who is lying in the bed she made, but under the duvet she probably didn’t want. That lady is now bound by something more than a marriage vow. I thought she looked lonely and scared.

There are lots of sayings that sort of fit with how that lady is where she is. They apply to her and they apply to all of us. The first one that springs to mind is “you reap as you sow”. What you put out and lay the foundations for are what you will gain in return. Yet, it just isn’t as simple as that. We all know how it feels to put our heart and soul into something, only to find that it fails or isn’t reciprocated. (Reciprocated. One of my favourite words). What does that mean in real terms? Well, I can’t be 100% sure because god knows I’ve put my heart and soul into a lot of things and got, what feels like, nada in return. But what I think it means, is that if it’s the right action, at the right time and for the right reason, then the reward will be bountiful. But if it isn’t, then reward is in the form of a lesson learned. Those lessons are bloody difficult. It’s often nearly impossible to pick up all the scattered pieces of a broken heart and dream and accept that all the effort was merely for a lesson. My personal experience has been that its far easier to pick up the bits that are within reach, leave the other bits behind and retreat. Retreat and stay afraid of the same outcome and so not try again. Does that make sense? If I’m being honest, though, that approach hasn’t really got me far.

So my jigsaw. It’s a work in progress. That’s the best way I can describe it. There are some bloody lovely parts, there are some not so pleasant pieces and there are too many bits in the wrong place for my liking. I find I can no longer live comfortably with that knowledge. It’s time to pick them up, turn them over and around and have the courage to place them where they truly belong. Then thrust myself back into the box of pieces, there are millions of them, run my hand over a few of them and choose some new parts. I can do that. Life is full of chances and opportunities after all. If I’m not in that metaphorical box of pieces, then I can’t take advantage of those that are there for the taking.

Life is a choice. Life is a chance.