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.


Ruminations with Rumi…

I feel like I’ve been fighting my whole life. There is a war that rages between my physical deterioration and my mental or emotional strength. The weapons used are cruel, there is little respite and the stakes are fricken enormous.

Rumi referred to emotions – all kinds of emotion – as “unexpected visitors”. Rumi thought we should let these callers in and let them visit with us for a while. Give them a cup of tea and get to know them type thing. This concept from the 13th century passed the stiff upper lipped British by. Why do we feel the need to be restrained and remain resolutely defiant when an emotion comes calling?

Rumi writes beautifully. Well, the way he has been translated from Persian to English is beautifully done anyway. I’ve only relatively recently been introduced to his writings and they resonate with me pretty deeply. I read all sorts for all sorts of reasons.

I read because I desire to understand. I read because I want to learn. I read because I need to get lost in a world that isn’t mine. I read because I long to escape. I read because I must. I read because I can. For now, reading is an ability that has escaped the tortures of my mind and body. Reading takes it all away. It’s my shelter and my comfort. It reaches into my soul and makes it laugh, makes it think, makes it feel invincible and makes it forget. Reading nourishes me. Language fascinates me. Evolving language, at once, gives me joy and makes me long for the days when Mr. Marshall taught me that “focussed” has a double s!

When I hear someone describing reading as boring, I can only think it’s because they haven’t found the right book yet. Going back to Mr. Marshall for a minute (he was one of my English teachers at school), he always said there was no such thing as a boring activity only boring people. I’ve turned that over in my mind a lot over the years between him first saying it (he said it a lot) when I was 14 and now when I’m 46. I came to the conclusion a few years ago, that what he was trying to say is that everyone is different and will feel differently about every activity, be it reading, playing football, singing…whatever. That means the activity in itself cannot be described as boring. Boring people, however, are those that choose not to engage in any activity at all. That’s what I think he meant. He’s dead now though, so I can’t ask him. I wish I had at the time. But, well, if wishes were horses, beggars would ride.

Anyway, I’ve digressed. I do that a lot. So, why do we find it so difficult to sit with our own emotions and acknowledge that we have them? Are we conditioned to believe that we should only feel positive emotions? Are we only allowed to feel happy, excited, thrilled, delighted, amused, loved, loving? Why do we feel its ok to acknowledge that we feel angry about something but not that we feel hurt by it? Why do we feel it is a weakness to be able to show vulnerability, but at the same time not be shocked when we get hurt? Why do we see it as inevitable that if we display an emotion that is not perceived as socially acceptable that we will somehow be thought of as a lesser person? Who decides what is socially acceptable??

My experience of showing emotion has not always been positive. I didn’t show my true feelings for years after I was told that my tears were pathetic and weren’t going to be put up with. I was 15. In order to swallow down the emotions I felt (& god knows at 15 I felt them ALL), I built some bloody fantastic walls. My grandad, a builder, would have been mighty proud of my structures. The wolves were not going to huff and puff and blow my house down! My house. There was no door. There didn’t need to be. I wasn’t coming out and you weren’t getting in. Simple. I was described as having ice water running through my veins. Apparently, it was discussed at length by people other than me, that I felt nothing. I felt baffled by this. If I showed that I was upset or hurt or confused or in pain then that was wrong, but if I showed nothing at all then that’s wrong too?

As a consequence of this inner conflict, when my emotions burst out of me as they are want to do, they were generally inappropriate. I couldn’t control them. I tried to channel them in the various sports I engaged in, although I didn’t know at the time that’s what I was doing. I was young, I was scared and I felt alone. So, I stuck everything in my solid house, climbed out the one window and tried to live a life that wasn’t full of anger and frustration. And I did.

I’ve had many, many wonderful adventures in my life. I’ve seen a lot of things others can only dream about. I’ve done a lot of things that others can only wonder about. My memory bank is full to brimming with wonderous colours, sights, sounds, people, noises, feelings, music and laughter. The flora and fauna of many a country are stored away to be brought out in writings or in musings or just to give a little colour to my day. All of this is juxtaposed with my house.

It’s only been in the last 10 years or so, that the window to my house has been cracked open. There is still no door. So if you want in, you have to really WANT it. One of Rumi’s most famous quotes is “the wound is the place where the Light enters you”. I liken that to the cracking open of that window and allowing someone other than me have a bit of a wander around. It surprises me to this day how hard I find it to let people into my life. This blog helps me immensely in my journey toward sorting through my house and throwing out old rubbish. I know now and acknowledge that I’ve been suffering from depression for most of my adult life. Acknowledging that was probably the hardest thing I’ve ever done, but liberating at the same time. For a few years, it was only me and my GP who knew. (When I think about this, it isn’t so. I suspect a lot of people knew that I was suffering, but god forbid they suggested it to me.) When I decided to go public, it was done so casually that when I think about it now it makes me giggle. I would just drop it into conversations. As an adult, I’m better at knowing when it is and is not appropriate to do certain things. So while I would throw out this comment about “my depression” it was always in the right place in the conversation. It had to be.

So, my mental state is on one side and the deterioration of my physical packaging is on the other. The MS diagnosis is still fresh and raw and I struggle every day to find positives in it. At the moment, most days, I don’t see any bright side at all. Well, other than the one that lets me say “it could be worse”. I was at the hospital a few days ago and tried to get answers to the muscle weakness, the internal inferno, the other changes that are happening to my body. There are none. No-one can tell me if the weakness is a relapse. They think it probably isn’t, but they can’t be certain. No-one can tell me if the weakness is the beginning of my MS getting worse. Right now, there is nothing to be done. There is nothing that can be done. Although I feel the time is right to start saving hard for whatever future is ahead and what kind of walking aid I may need. I contemplated building an extension to my metaphorical house. I decided not to. I can’t always articulate my feelings, but I no longer want to bury them. Mainly because I simply can’t be bothered anymore. Its hard work pretending to feel something that you don’t and it’s even more exhausting trying to deny a feeling that is pervading every cell in my body.

So, I know to expect my depression to be with me. I know that the medication I take for it allows me to deal with it, in the main. I know that the medication doesn’t make the depression go away, but it does give me a bit more of myself (if that makes sense) to be able to cope. I also know that, for me, I have to sit with it alone for a while so I can process it enough to share it. I’ve learned there are no hard and fast rules when it comes to dealing with depression. I know that what works for me, won’t work for everyone. I know that just because I’m willing to share my story, doesn’t mean that everyone wants to hear it. That’s ok. That’s actually how it should be. We aren’t all wired the same way. We aren’t all moved by the same things and we aren’t all disgusted by the same things.

Thank goodness!

So back to the words of Rumi…my body may seem meek, but my spirit does somersaults in the sky! At least it will when depression has finished it’s cup of tea and it’s visit is over.


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.


Rambling weebles

The past 6 months or so have probably been the worst of my life. Worse than the passing of a loved one? In some ways, yes, I felt like I lost my body, my brain and my self. Worse than breaking up with a partner? Yes. I felt like I was splitting from my health.

Recriminations were rife, even though I tried not to indulge. Looking for something to blame was common. “It’s not you, it’s me!” my brain was screaming at my body. There have been tears. Oh so many tears. There has been much rage and anger. There have been threats of giving up – what’s the point? There has been a darkness that I didn’t know was possible and some realisations that may well have come too late in my life. There has been a lot of soul-searching. A LOT of soul searching.

Epilepsy has caused me much anguish over the years and a lot of pain both physical and emotional. I feel like I should have been better prepared, in some ways, because I’ve already been dealing with a neurological disease for 30 years, so adding in another one, while not ideal, shouldn’t be that hard. Right? Wrong. Epilepsy knocks me on my ass and then I get up, go through the depression and get on with life. I’ve made my peace with the limitations it placed on my life. I don’t like them, but not being able to drive, not being able to deep sea dive etc, while not what I would have chosen for myself, have not proved to be the end of the world. It took me a long time to get to that place of peace and it’s not always been a stable place!! In some ways, because I’ve grown up with it, epilepsy didn’t/doesn’t hold the same level of fear that MS has introduced. As my life evolved so did my coping mechanisms. I haven’t always got it right, but the humour that I can sometimes find in the situations seizures have put me in, made things easier for those around me and that in turn made it easier for me. Sometimes, the laughter is hard to fake.

MS has caught me out. As you get older, you kinda expect certain things. The way everything goes south, the wrinkles that appear, the memory that’s not quite as sharp as it was, the tendency to utter the phrase “when I was your age…” and the knowledge that some debilitating conditions could appear in the future, But that future was my 70s or 80s, not my mid-40s. The discovery that MS may have been with me for a bit longer than the diagnosis is a shocker and the knowing that it could, and probably will, get worse is hard to stomach. My choices are stark. But they are choices and they are mine to make.

The way I see it, I have reached a three-pronged fork in the road and the time for dithering is passed.

I can go right. Right takes me to a field where I sit down, give up and wither with the coming of autumn and then die in the snows of winter. The bench I’d be sitting on is hard, the view is bleak and I forgot my scarf.

I can go straight ahead. I can take the drugs, heed the medical profession, not rock any boats and wait for the inevitable to catch up with me. This route would lead, eventually, to the same field that’s at the end of the right-hand path.

The third option is left. Left will mean taking control of that which I have power over. Left means that summer is longer, autumn is radiant and winter is crisp but faced with a scarf. Left means taking advantage of what is on offer to me in terms of treatment and supplementing it with what else I choose to put inside my body and hence my brain. Left means making my body and mind stronger. Even stronger than they had to be through the trials of not just epilepsy, but life in general.

That is the clincher. Life wouldn’t stop just because I’d decided to. Life goes on. Life finds a way. Sometimes its a crappy way, but it is a way. Why should I not try to take part in that? Would it really be easier to just give up? I know there will be days to come, when giving up is all I want to do. I’ve already tasted that. I’ve already come through some of that darkness. I know there are days coming up when I might actually not physically be able to get up. The numbness might give way to weakness in my limbs. My brother has a saying, that if you put your head in the sand, then you leave your ass exposed. How true. I’m aware of what my future could hold for me. I’m aware that there could be immense difficulties ahead. That lucidity means I damn well know that there could also be some bloody awesome times ahead. I’m ONLY in my mid-40s. My life isn’t over because of 2 letters! My life can still be what I make of it. My life WILL still be what I make of it.

This is where the vast amount of soul searching that has been done and is still to be done, comes in. You have to figure out what is important. I’ve had to work out what is important to me. What am I prepared to put up with and what am I not prepared to have in my life. That isn’t easy. That hasn’t been easy. It won’t be easier in the future. Yet, I have a backdrop to weigh it against. MS, Epilepsy and maybe Ocular Sarcoidosis. Thats my back drop. Thats my canvas. In the grand scheme of my life what is worth it and what isn’t. Is putting up with a nasty, vindictive person in my life a good way to spend my time? Yes, it makes it easier for other people to play nice, but what does it give to me? This is one of many questions I’ve asked myself. I don’t have all my answers. I don’t think I will ever have all the answers. But, again, that is part of my tapestry. That’s my jigsaw. My attitude towards the pieces that are laid out before me is changing. I’m ok with that.

There seems to be a helluva lot of bird crap on my path of life just now. Regardless of which road I choose to travel. I suspect there will be more to come. I try to remember that people pay money to spread crap on crops to make them grow bigger, stronger and healthier. The crap on my path is free, albeit I don’t want it sticking to my shoe.

Just as weebles wobble but they don’t fall over, well hell, I’m still standing!


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 ???????

This is going to be a hard one to write I think. Although, the good thing is that, unlike with the last post, I’m actually not having to use voice recognition software. My sight has improved a little. What hasn’t changed, is that I have a second neurological disorder. In reality, I don’t know much more than I did when I last posted, but I need to write this down in order to get my feelings out and some of you have been with me on this journey from day one. If I can’t share it with you, then who….?

Epilepsy has been part of my life for nearly 30 years. I came to terms with having the disease (yes, I can call it a disease…Epilepsy and Words…), a long time ago. Of course, I still have bad days; days of “why me?”, but on the whole, I think I deal with it pretty well. The last couple of months, a new distraction has come my way. It turns out, final diagnosis pending, that I have a second neurological condition. Aren’t I the lucky one! Multiple MRIs, innumerable blood tests and antibody tests, medication galore, a stay in a hospital and the threat of a lumbar puncture later, I still don’t have a name for this new affliction. All I know for sure is that it’s degenerative, it’s cruel and it’s brutal. It tried to take my sight. It preyed on both my optic nerves and brought a degree of terror to my life that I haven’t felt for decades. My eyes aren’t the only recipients of this torture. Other parts of my nervous system have also been attacked. The severity of those attacks is still up for debate. Apparently, it’s “early days” and “too soon to be certain”. I’m still trying to get what’s left of my brain around that!

I’m still finding it all hard to take in. I can’t say I have fully come to terms with what’s going on. I think that’s mainly because I don’t really know what is going on! What I do know is this. I’m not the same person I was just 2 months ago. I can’t help but think I’ve been given a kind of challenge. My brain has thrown down a gauntlet; I have no real choice but to respond. How to reconcile the brain and the body? How to balance the head and the heart.? How to rise to the challenge, fight what is proving to be a bloody battle and not lose my essence? The past weeks have shown me some hard truths and tried to teach me some tough lessons. I say “tried to”, because I don’t think I have really come to terms with enough of this situation to truly be able to know what I’m being taught.

Epilepsy tried to teach me to be strong – but I’m not strong enough. Epilepsy tried to teach me resilience – but I’m not resilient enough. Epilepsy tried to teach my humility – but I’m not humble enough. Epilepsy tried to teach me to be brave – but I’m not brave enough. Epilepsy taught me so much, but it seems I have so much more to learn. I haven’t worked for 2 months, my sight isn’t good enough and another seizure floored me a month ago. Suffering a fit was no great surprise. A combination of stress and the, almost, total lack of sleep really made it a bit of a foregone conclusion! That being said, seizures always knock me for 6 and this one was no exception. I’d only got my chipped teeth fixed at the beginning of the year too!!

Anyway, as is always the case following a fit, reflection takes over at the top of my list of things to do. This time though, my mind was in overdrive anyway and I find that I haven’t been able to fully process the seizure and piece together the events that lead up to it. I’ve blogged before about how I need to be able to put together the timeline in order to start the process of acceptance that I need for me. So, while I know what the trigger for the fit was, I’ve lost time and I don’t know how to fill those hours. Maybe I’ll get to that later…

My jigsaw is featuring heavily in my thoughts at present. The corner pieces are still valid, 45 years worth of the big picture are in place, but what is next? Someone I trust said that you don’t have to have all the jigsaw pieces gathered to know how the picture is going to turn out. That’s very true. So, what do you do when you can see the pattern and don’t like what is forming? Well, you just pick new pieces and use those, right?!

Easy! Job done! haha – if only!! Picking up new pieces means forming new patterns and changing, what may well be, deep-rooted behaviours. For some folks, I dare say those changes may be easy, for others it may require them to embark on the toughest of journeys. It is true that some changes are easier to make than others and it’s also true that what is easy for one is another’s worst nightmare. That’s what makes us individuals. That’s what has been going through my mind. I look at the pieces already laid and I see patterns, I see a lot of habits that aren’t helpful to anyone least of all me. I don’t have all the bits, but I can predict what will happen if I don’t choose a new colour scheme for my brain!! So, it’s time to redecorate. Re-evaluate what is important and what is just window dressing and learn to adapt.

I’m removing toxic people from my life. If they don’t notice, then it proves they have no real place in my life anyway. I’m trying to care less about things of no real consequence; I’m trying to figure out what those are! I’m persuading myself to be open to opportunities and to stop letting fear (or laziness!) from making my life little.

None of us knows what will happen tomorrow, or indeed in the next hour. We can plan what we want to do and map out our days and hours by the minute if we want to, but we simply have no way of knowing what life is going to throw at us at any particular point. There is a saying I can’t quite remember how it goes but it’s along the lines of – “there is nothing more certain than death and nothing more uncertain than the hour”. In broader terms, death truly is the only real certainty in life, but when it will happen is anyone’s guess. So, this leaves the terms of life wide open really and it’s up to the individual how they choose to live it. Life throws spanners at us all the time. Some miss and some get stuck in the wheels, it is up to us to decide what we do about them.

I have achieved much in my 45 years. I’ve seen and experienced extraordinary delights, cultures, people and places. Adrenalin has coursed through my body and driven me to experience some of my wildest dreams. I want to stop saying that in the past tense. Epilepsy taught me so much; this new test will teach me so much more.



Epilepsy and Labels…

There is a difference between having something and being something. I have green eyes; I’m not a green eye. I have a broken arm; I’m not a broken arm. I have epilepsy; I’m not epilepsy. There is a huge difference between having and being, that said, I do use the phrase “I am epileptic”. I also use the phrase “I am brunette”. For some reason that doesn’t seem to conjure up the same negative connotations that announcing I am epileptic does. Why is that?

There is an entire minefield out there called “political correctness”. It’s huge. There is such an enormous amount of pressure to use the correct terminology to refer to certain conditions that it’s a wonder anyone talks about them at all! Sometimes it makes me really angry that there is more discussion about whether someone “is epileptic” or “has epilepsy” than there is about treatments. And it seems to change every 5 minutes. No-one is blind anymore, they are “visually impaired” or should that be “visually challenged”? I don’t know! Lord forbid you call anyone disabled! Yet, when I was growing up, there was absolutely nothing wrong with calling a person what they were. Nowadays, though, it’s a label apparently and we can’t be seen to be labelling people!

I’m not sure how calling a person what they are, is labelling them. Why does it have to be negative? I am brunette – call me brunette. I am epileptic – call me epileptic. I’m not offended. Why should I be? I am, after all, a brunette epileptic!! Is the fear of getting the term wrong, actually contributing to the lack of open discussion about certain diseases? Are we so scared of saying the wrong thing that we say nothing at all? I don’t want to use the wrong “label” so rather than talking to you about your disease, condition, disability, challenge (whatever!) I just won’t say anything at all. Then that will save me getting embarrassed and you getting riled up because I may have used a term that was perfectly acceptable in the ‘70s, ‘80s and beyond but is shunned today.

I would much rather someone talked to me about epilepsy and acknowledged it, than kept quiet because they don’t want to offend me by calling me epileptic. Maybe I’m missing some huge point here. And I open myself up to correction.

Being epileptic is part of me, sometimes it’s a huge part of me and sometimes it’s not. 

To my simplistic mind, there is no offence in either of those statements. However, in some quarters the first statement is a label and we don’t want to label people. Who decides that? I know that I am over-simplifying things a little. I recognise that people are people and everyone is entitled to live a label-free life. What I don’t seem to be understanding is what makes a label negative, if the statement is true? I am not the sum total of my labels, but what if we stop calling them labels (to me, a label is a physical thing that is attached to another physical thing) and start calling them adjectives. There is nothing wrong with adjectives is there? Now, don’t get me wrong, I absolutely understand that there are some adjectives out there, that are utterly offensive and I want no part of them; but describing me using a different form (i.e. changing the ending) of the name of my disease, just isn’t offensive in my mind.

I seem to be ranting. I would much rather people talked about epilepsy openly in the same way we can talk about flu. Ignorance is far from bliss. I want to talk about epilepsy. I want the whole world to realise its existence and for those living with epilepsy to be able to talk about their experiences without fear of rejection. I sometimes find myself trying to choose a different term to describe my own life with epilepsy because I don’t want to offend anyone out there by having them think that I’m (negatively) labelling them. If I call you epileptic, then it’s not meant to be negative. Calling someone something, doesn’t make them that thing. You can call me a dog. It doesn’t make me a dog. It’s only negative, if I allow it to be negative.

Epilepsy is part of my life. It is a consideration in everything I do. I wrote in my last post about having wobbles. Yes, I have them. After reading the post, someone got in touch with me and assumed that my work trip was off. That I wouldn’t be going. I replied that of course I’m going, I mean why wouldn’t I be? I don’t think they got my post at all. My post was trying to demonstrate that I had a wobble. That I thought I was going to have a fit (ok seizure!) even though common sense was dictating that I wasn’t. I’d bumped my head is all. I was trying to demonstrate that while I do believe that having epilepsy is not the end of the world, I’m not always positive about it and that it does scare me. When I’m having a wobble, the last thing I want to think about, is how to describe my feelings in politically correct terms that won’t offend the casual reader or another person who is living with epilepsy. I want to be able to pour out my feelings raw and un-censored. Being permanently politically correct does not lend itself well to this. I had to make a decision. A decision that every human being has to make for themselves. I decided that I had to be true to myself when I began this blog. I decided that it has to be a true representation of how epilepsy makes ME feel. In order to do that, I have to use words and phrases that I use and I have to hope that this blog reaches people still holding the intentions that are behind the words I use. I guess only you, the reader, can be the judge of that.

Writing this blog has helped my confidence significantly. Epilepsy has not played a starring a role in my battles with low confidence, it plays its part though. My confidence was ruined long before I was diagnosed with it. But writing this blog helps me to put things straight in my own mind. Reaching out to others to help raise awareness about epilepsy and its effects, helps me enormously. So, please do not let words and the misperception of a negative label prevent discussion about epilepsy. Talking is good. It’s a way to raise positive awareness about epilepsy. It’s a way to dispel myth and hammer home a firm belief that a diagnosis of epilepsy does not and should not signify the end of life as we know it. All of us with epilepsy have to find a route through it. Talking about it, sharing experiences – good and bad – and generally being unafraid to acknowledge its existence is a great way to move forward.

My name is Kirsty and I am epileptic.


Epilepsy and Truth…

You look fine! You look great! Are you feeling better? Some of the comments and questions I’ve had this week. It’s nice that people care. I look ok, bruises have gone, scratches are healing and make-up is wonderful! Do I feel better? Hmm. Physically, I feel ok. Yay! Mentally, I’m struggling. People don’t really want to hear that. It’s hard to know how to respond. They just want the “yeah, I feel better thanks”. I can understand that. Like I say, it’s lovely that people care enough to even ask the question.

I’m not feeling better though. I’m scared and I’m worried and I’m still trying to shake the disjointed feeling that’s been bugging me for the last few weeks. I feel like I’ve fallen apart and been put back together again, but the wrong way. It feels like there is a piece of me in the wrong place, or a bit missing. The fatigue is all encompassing .My brain is trying its best and I give it so much credit for its ability to act practically and tell my body to do the things it’s meant to be doing. So, I can work, I can write, I can do things that I would normally do and I can do them fairly well, pretty quickly after an episode. So, the physical side of things is doing not bad at all. The metaphysical side though, well its taking a bit of time to sort through the feelings.

A friend said to me a few days ago, that I have to tell the truth about what happened and how it makes me feel so that people have a chance to really try to understand what I’m going through. He is right. It’s not that I’ve lied about what happened, it’s just that I’ve given a sanitised version, probably as a means of self-preservation for me and so that others don’t worry about me so much. Having to come up with a system whereby a friend has permission to contact various people if they don’t hear from me within a certain timeframe, is particularly hard for me. I know it’s for my benefit, but it feels like an imposition on my friend, even though they assure me it isn’t. It feels like I’m being constantly watched and I find that so very very difficult to deal with. Oh, I know the logic, I understand the logic, but it doesn’t mean I have to like it. Why do I tone down how I really feel? Well, there are a few reasons. I find it makes it easier for others, they’re less inclined to worry if they think I’m ok and not concerned about my condition. Secondly, it’s a means of me retaining an element of control over my own life. The emotions are complex. Hell, I don’t understand them so I’m not entirely sure how I’m supposed to explain them!

When I initially became aware that something was wrong and something had happened, I was lying on my bed. Face down, in a pool of vomit. I got up and went to the bathroom where I saw I’d also vomited. I went from there to the front room where I noticed I’d also vomited on the sofa. My thought process was to unzip the sofa covering and put it in to the washing machine. A good move, my sofa covering is washable, so a perfectly reasonable thing to do. After I set the washing machine off, I went back to bed and I lay back down in the pool of vomit. It would probably have been the more sensible thing to strip the bed and wash the linen first, no? I’m always sick after a seizure. The difference is there was no one around to hold my hair back and make sure I didn’t lie face down in it. I can remember thinking while I was putting the sofa covers in the washing machine that I really wanted a cup of tea. There was no-one there to make one for me, and I couldn’t really remember how to do it. So, I went without. I don’t know why I knew how to work the washer, but I didn’t know how to make a cup of tea.

I’m still trying, in vain, to put together the jigsaw. I know I spoke to my brother on the Friday night and I know I came to on the Sunday morning. I know I must have moved around after the initial fit, because the sickness always comes afterwards and I was sick in several different places. What I don’t know, is exactly when the first seizure occurred, how long it lasted or where it happened. And I have no idea how many seizures I had. I don’t know how long I was unconscious for. I know I was present enough on Sunday to be able to get myself from my house to my parents place. I know that I behaved appropriately in the company at my parents’ house. I know I didn’t go to the hospital, but said I did. I know that after knowingly living with epilepsy for 26 years, this is the first time I remember having felt so horribly disjointed for so long after an episode. When my brother dropped me off at my home after being at my parents place, I walked off in the wrong direction because I couldn’t think where my house was. I did eventually turn around and go in the right direction, after yelling at my brother for letting me go the wrong way! He said he thought I was going to the shop – aye, right!

I’ve talked before about feeling more afraid of what comes after the seizures, than the physical act of seizing. The depressions after the episodes are deep and what feels like a tear in my soul takes a while to heal. I fear those feelings. Why? I know they change me. They change my personality. They chip away my self-esteem and they hack away my self-confidence. I fear the part of my epilepsy that I can’t see, but can only feel. Now, I find myself in the position of trying to deal with the intangible, while battling hard a terror that I’ve never felt before.

I accepted a long time ago, a very long time ago, that I have epilepsy. I made a conscious decision to live alongside the condition and to not let it consume me or dictate to me how I live my life. I firmly believe that having epilepsy is not the end of the world. Life could be considerably worse. I find myself trying to maintain this belief while coming to terms with a feeling of fear that I’ve never had before. I’m scared to leave my house. I’m scared to be among people. And no, the irony of that isn’t lost on me. I was alone, in my house when this episode happened. Yet, I don’t want to be with people and I don’t want to leave my home. It’s an effort to do anything. My workplace aswell as my friends, have been amazing. I’m not sure how other people who suffer chronic, unpredictable illnesses manage if they have a less-than supportive workplace. I’m very lucky.

I feel like giving in to the feelings. I feel like just staying in the house and getting my GP to sign me off work, so that I can just stay home. I have no need to leave it. I can do virtually everything I need to do, well, virtually. Every day I persuade myself that I must leave the house. That I must continue to fight. Every day I have to remind myself that I’m still Kirsty. I remind myself of the promise I made to me, not to let epilepsy win. The battle is constant. I know others that don’t suffer, find it hard to empathise. There are no physical signs anymore that I’ve had a seizure. Yes, I look fine. I look “normal”. I don’t feel it though.

I was telling my friend that someone had said to me that they’d noticed a real change in my personality a couple of days before the fits. He was saying that if I told more people the cold, hard truth about how epilepsy affects me, then they would be more switched on to the signs that an episode is coming. That’s not to say that the episode could be prevented, that would never be the case for me, but it would maybe mean that I could make sure that I was going to be in a safer environment in terms of me not being alone for such a length of time. It’s hard to know with me though, as I’m such a moody person, whether it’s a sign or whether it’s just me with my knickers in a twist over something! I asked him if he would be prepared to take that chance and his response was that he would rather piss me off, than have me go through what I’m going through. I thought a lot about what he said to me.

Although relatives have died through having epilepsy, it isn’t something that preyed on my mind or something I dwelled on; until now. I believed that just because it happened to them, didn’t mean that it was going to happen to me. I’m trying to persuade myself that to believe anything other than that would be a bit silly and ultimately detrimental to my overall health. Yet, there it is. It does happen.

So, the truth of this episode for me, is that it’s brought with it a whole range of feelings that I’ve never had to deal with and don’t know how to. I’m scared. Yes, I’ll smile with you. Yes, I’ll laugh. Yes, it will seem to you that everything is normal with me. It’s not. The battle lines have been redrawn and until I can come to terms with that and find a way to deal with it, life is going to be a little different.

There has to be positives in this though. When I find a way through it, and I will, surely I will emerge a stronger person with a new arsenal of weapons to tackle everyday life with. That’s the first thing. Secondly, I’ve been reminded again how much people care. Support comes from the most unexpected and far-flung places and I’m grateful for that.


Epilepsy and Decisions…

I’m not very good at making decisions. I am very good at telling others what I think they should do though. There is a school of thought that to make decisions you need to toss a coin, because before the coin lands you already know which side you want it to land on. I’ve never had the courage to actually do it, because I’m scared I’ll find out that I really do need to walk the walk and not just write the blog.

So, I was meeting my brother for lunch one day many many years ago. I knew I felt strange walking along the street, but I didn’t attribute it to anything. It’s only many years later that I know it was a sign. I never made it to lunch. I did make it to hospital. I have no recollection at all of what happened. I don’t even remember being in hospital. I do remember my brother asking me not to listen to my voicemail. Well as soon as he says something like that, of course I’m going to listen to it!! There were an awful lot of expletives, something about me wasting his time and a lot about what he thought of me. As it turned out he was standing just down the street from where the paramedics were trying to get someone into an ambulance. He had no idea I was the someone.

Recalling that little anecdote makes me think about the number of times I’ve been angry, hurt or upset without really knowing the full set of circumstances. My brother couldn’t have known that I’d have a fit in the centre of the city on a mid-week lunchtime. He was miffed because in his eyes, I’d just stood him up. Something I’ve never, ever done without telling him I’m going to do it! Maybe I need to step back a little and give a person time to explain their actions rather than jumping immediately to the wrong conclusion.

Anyway, I digress.

I’ve been thinking a lot about my jigsaw lately. I’ve established 4 corner pieces (I decided that my jigsaw is rectangular rather than round…). I think of my 4 corner pieces as Health, Friends/family, Significant Other and Joy. Yours can be whatever you want them to be. The corner pieces are in place, but I’ve not built on each of them equally. Joy wasn’t always a word I associated with my life. It’s a relatively new term for me and I had to turn the piece over many times before I became comfortable with it. It seemed like a bit of a religious term to me and I’m not religious so it didn’t really sit right with me. My acupuncturist used it several times during my treatments. He used it, as I recognise now, as it should be used, as a description of pleasure and happiness. It represents the flip side of my battle with health, or more specifically epilepsy. My life isn’t awesome, but it’s not that bad. The non-decisions I’ve made in my life, have got me to this point as much as my choices have.

If you bury your head in the sand you leave your ass exposed. I pretend everything is ok when it’s not and I try to ignore issues that arise. I find it hard to make decisions. I could write a list of pros and cons, but I know I would always lean towards the easy answer. Its a complete cop-out, I know. I’ve had some spectacular times in my life and they’ve always come when I’ve pressed the “f**k it” button. The older I’ve got the more scared I am to press that button. It’s there in front of me, but the “what if’s?” are screaming so loud. Making decisions often mean I have to introduce new people into my life. Be they decorators, electricians, bankers, travel agents whoever. New people scare me. Maybe it’s because in my formative years, new people always brought bad news. New people, new situations, new surroundings. I’m terrified of them all. But I look at my jigsaw and I see years of blah. I don’t want to look back, when the time comes, and see a life of blah. I want to look back and see a life of hell yeah! To do that I need to be brave.

I use the excuse “I can’t afford to…” a lot. But the real question is “Can I afford not to….?”

On one hand there’s a life of blah. Safe, secure, good but not awesome. On the other hand there’s a life of fantastic. The difference? Choices. Sounds easy doesn’t it? What’s the problem? Take chances. Be daring. Live the life of adventure. If only. What if I have a fit in the middle of nowhere? What if I can’t pay my bills? What if I don’t have enough of a pension? What if? What if? What if? It would be so very easy to say that my life of indecision is because I have epilepsy. That would be easy but untrue. Epilepsy is actually one of the reasons I’ve done as much as I have. I take heart from that. I take heart from the hope that this blog raises the awareness that a diagnosis of epilepsy isn’t the end of the world. I hope it also shows that we all have a life to lead and choices to make regardless of any medical, gender, or race-related situation.

I find decisions hard to make, true. But I live in constant hope I’ll find my joy. Maybe I should start flipping a few coins…