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.


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!


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 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.