0

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.

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

Epilepsy and Plans…

Three weeks ago, I woke up lying in a pool of my own vomit. I’d been in and out of consciousness and alone. I have no memory of it. I’m struggling, really struggling, to process this.
I don’t even know where to start. It’s been 3 weeks and I’m still not firing on all cylinders. I hate that. My head is full of cottonwool, my mind is muddled and my thoughts are dark.

I keep thinking back to GGG Agnes who died because of a seizure. Did she choke on her own vomit? I make no apologies for the graphic nature of this post. I don’t know how to put it politely and to be honest, I just want to get the thoughts out of my head and onto paper. Writing helps me, it doesn’t make my feelings less intense, but it does allow me to process them a bit better.

I was alone. No-one missed me. That sounds dramatic doesn’t it, but it isn’t. I like my own space, I like my own company and it isn’t unusual for me to go a few days without speaking to or seeing anyone. I’m ok with that. Several people, some good friends, some acquaintances, have suggested, understandably, that I check-in with someone at least every day. For my own safety and, maybe, for the sake of others’ peace of mind too? That just doesn’t work for me. Does that make me selfish? No, it doesn’t. I’ve had a diagnosis of epilepsy for over 20 years and no-one has bothered before to suggest I check-in. I know the suggestion is currently borne of genuine concern for me, but it doesn’t take into account “me” and how I like to live my life. And it is my life and that means I get to make the decisions that affect it.

This is the first time in my epilepsy career, that I’ve not been able to piece together the jigsaw and account for the time between the lead up to the physical seizure and the coming to. To suddenly start changing my life to check-in everyday with someone, to me, feels like an imposition and pressure on the recipient of the check-in, and an infringement of my human rights! It feels like an Epilepsy ASBO if you will. It’s bad enough that I get electronically tagged as a potential flight risk when I go into hospital! I don’t want to start having to account for every single hour of my day to someone else. However, I do accept that this was a potentially dangerous, dare I say life-threatening, situation and I recognise that it is the responsible thing to do, to have some kind of plan.

So, my very good friend, the lady who persuaded me to write this blog, has agreed to be my buddy as well as a my friend. The theory is, we are in touch virtually every day by electronic communication anyway, so it doesn’t feel intrusive to get a message from her. Our agreement is, if she doesn’t hear from me for a period of 48 hours, she has permission to contact family members and/or the medical profession to flag that I’ve gone off radar. I’m comfortable with this arrangement and it’s gone some way to alleviating the worries of some others. The suggestion that I have a panic button installed was dismissed very quickly, given that I would be in no state to recognise that I needed to “panic” and press the button!!

So, future plan is in place; present pickle persists. I simply can not get my head around this episode. I can’t forget about it and move on; I can’t compartmentalise it; I can’t stop turning it over and over and over and over again. I’m a little lost.

Actually, I’m more than a little lost. I know it. I can persuade others quite easily that this will pass, but I find myself questioning whether it will. I’m the first person to shout from the rooftops that an epilepsy diagnosis is not the end of the world; I stand by that. I firmly believe that it’s simply an obstacle that can be overcome often more easily than other illnesses. That said, I don’t take epilepsy lightly. It’s a seriously misunderstood, under-advertised condition that affects a not insignificant proportion of the population. It is often a life sentence and it’s rarely an openly discussed topic.

What happened to me 3 weeks ago, happens to someone every single day through misuse of drugs and/or alcohol. That scenario is often discussed, laughed about, advertised on social media and occasionally worn as some kind of bizarre badge of honour. I never have understood, and never will, why some people choose to see waking up in a pool of vomit as something to be proud of. Maybe I’m missing something?