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!


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.


Epilepsy and Time…

It’s been a while since I’ve written. Truthfully, my mind has been battling epilepsy in more ways than one and my ever-present tendency to depression has been growing stronger as we head toward the festive season….

I still don’t understand the letter from the consultant. I asked for clarification and was told that, yes, my brain is “shedding excess electricity virtually all the time”. My questions surrounding the link with sleep were studiously ignored and my plea for help in understanding pretty much dismissed out of hand. In the 10 months since the last major cluster of fits, I’ve not really moved forward at all. Time. The great healer?

Nah. The passage of time, for me, has concentrated the feelings. The more time has passed, the more frustration has built up, the more fear has squeezed at my heart and the more blackness has wrapped itself around my soul. Time maybe is a healer, if you are able to forget or accept. I can’t. I need reasons, I need understanding, I need to be able to rationalise out what I’m feeling.

The fear I work so hard to combat every day is winning. It’s clutching at my throat and slashing through my mind. I can’t trace any thought path without coming up against a rip of fear through my mind. Scared to do something and terrified to do nothing. I never envisaged that my life would be so filled with fear. 43 years of age and terrified of the “what-ifs”. Epilepsy. Why me?

I hate that expression. “Why me?”. It’s so whiny and moany and self-pitying. Yet, it’s prodding it’s bony fingers into my grey matter and tapping out the “why me?” beat. I have no real reason to feel sorry for myself, so why am I pointing myself down that path? I don’t know. I’ve done the tests and asked the questions and no-one is giving me answers to the new set of questions. I’m telling them I’m tired all the time and asking for the link with my epilepsy to be investigated, understood, hell even just acknowledged and getting nowhere.

So, I find myself at the “what’s the point?” stage. Time is marching on, keeping religiously to its mission, and I’m out of step with the beat. I can’t keep up with it. I want to yell at it to just stop for just a few beats so I can catch my breath, recalibrate my mind and give myself a chance to think. Time doesn’t work like that though. Time actually doesn’t exist if you think about it. Time is something that man created as a measure. No-one mentions 24 hours or says “I’ll be there in an hour” in the bible or the Koran or in Buddhist texts do they? A day was the passage of light to dark to light and it changed with the seasons. Right now, I need that lack of time. I need to be able to live with what nature has been doing since the big-bang or the creation or whatever it is that you believe. But before I know it, the alarm clock will be screeching at me, because it has been decreed that I must be at work by a certain man-made time. I must eat lunch between a certain man-made time of day, I must finish a task by a certain time, I must pay a bill by a certain day. Oh yes, I know, anarchy would reign supreme if we didn’t measure time, but if you stop to really think about it…, if we hadn’t began to measure time the way we do, would anarchy reign or would we just live in mute acceptance at the passage of light, dark and season the way we live with unthinking acceptance of markers of time?

Right now, I need a reset button. I need some days or maybe a whole season to get to know me again. Not depressed-Kirsty, not epileptic-Kirsty, not worker drone-Kirsty. Just Kirsty. Time has made me forget what it’s like to be me.