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Have I done “this” to myself?

The great unanswerable question.

What if I have?

I created this blog to try to keep me honest (if not sane). I wanted to share my tales with you (note to self – get some real friends haha). Maybe some of it will resonate with you, maybe it won’t. Feel free to let me know. But be constructive, please; there are enough real bitches in my day-to-day! As with most folks, in my experience, my skin is thick and thin. Some days negativity just washes over me and other days it sends me quivering into the corner with alcohol of choice to contemplate why everyone hates me and is it because I didn’t do (fill_in_the_blank) when I was six?! So, be constructive, be pleasant, be funny, be quirky, be you. Just don’t be nasty for the sake of it, please – you’re free to jog on to the next blog any time you like.

I’m 47 and yes, I should know better. I have no kids, 3 cats, a mortgage, crippling anxiety,  epilepsy, MS, credit cards and a 9-5 that is never 9-5. I don’t have a criminal record, I have travelled some and my sarcasm is more than occasionally off the scale. I’m overweight, I have a potty-mouth and opinions coming out of my ears. But, I’m not nasty. I care about people more than I let on and though I often believe I prefer animals to humans, I’ve never been outrightly or deliberately cruel to any living creature. Basically, I’m an ok person. I have neither celebrity nor notoriety. I’m not poor, yet I’m not financially rich. I have lost my way a little in life. I have a need for a reset. I believe “focussed” has a double-s and I was always taught there are 2 spaces after the full stop at the end of a sentence. However, language is fluid and while I will never resort to a single-s focussed, I have bowed to single-space-after-a-full-stop pressure.

Recently, I decided to start having an organic meat and veg box delivered weekly. All part of me trying to be healthier, cut back on single-use plastics and enjoy lovely, fresh, local produce. Awesome. So, the delivery arrives a couple of days ago, jam-packed with fresh greens, grass-fed beef, natural yoghurt, eggs…you get the picture. I felt a swelling of joy and healthiness just welling up in me as I gazed at my bounty. Yesterday, surrounded by this wonderous nutrition, I decided to have toast, peanut butter and red wine for tea. The glass of red wine turned into two bottles and today I felt not just jaded but disappointed that I couldn’t be arsed to rustle up a quick whatever with all the gorgeous food I had or even stuck to the glass or 2 rather than the bottle.

Have I done “this” to myself? This is the question that is keeping me up nights at the moment. A throwaway comment, an endless supply of medical opinions, too many books read with too many differing approaches, too many conflicting ideas and my perceived intelligence is just not cutting it. I do the research, I read the opinions, I ask the questions and still, I can’t help wondering if there was something I could have done differently that would mean I would not be suffering from MS.

Epilepsy, it took a while, granted, but I’ve come to terms with it. I’ve learned to live alongside it. I don’t like it but compared to MS its a known quantity. I know it will hit me out of nowhere, it will knock me on my arse, I’ll spend a fair amount of time depressed and then I’ll pull myself together, get back up and move forward. MS though? Nope, I don’t know which way is up.

Maybe its because I sort of grew up with epilepsy, google didn’t exist and I wasn’t tying myself up in knots trying to figure out which scientific, peer-reviewed journal piece is the most reliable. MS hit me. Hit me hard and then ran away laughing. I feel like a baited bear sometimes. Chained. Tormented. Beaten. There is nowhere to run and the groups dedicated to saving and supporting can only do so much. MS is the stick, there is no carrot.

As is often the case when my mind is in overdrive and I’m desperately trying to find a way to answer a question that can’t be answered; I’m thinking about the past. Particularly friendships. I’m a big believer that not everyone who comes into your life should stay forever. Yet there have been some people that have been in my life for a period of time that I can’t quite come to terms with how they left my world. Sometimes, people just drift away naturally. Folk move away, get married, travel, whatever and they drift out of your life. There is no deliberate severing of ties, no harsh words, no event that causes a fracture. It’s all very natural and perfectly normal. Then there is the intentional ending of a friendship. There is a specific event or series of events that means the relationship is no longer healthy, reliable and productive. Then there is the loss that you don’t really know what happened or how it happened.

It’s this last scenario that has been on my mind a lot of late. I don’t really understand why some folk left my world and why I allowed it to happen. Now, there aren’t many that fall into this category, only 3 in fact. But I’ve never quite been able to understand what happened with the friendships. I wonder if they feel the same way. It doesn’t do to rake over the past. Yet, for me, the past holds the answers. It’s like I have this need to look back before I can look forward. I need to understand where I went wrong. And, in the same way, did I bring MS on myself?

Could the issues I have that fall under the scarred umbrella of MS, have been prevented. Did I do something wrong? Could I have ensured the health of my genes? If I can find those answers, could that mean I can reverse the damage done? Or is it too late? Is all I have left acceptance?

Unanswerable. Not unquestionable.

I’m reading this back through and it’s so disjointed. I apologise for that. I’ve opened my mouth and let my tummy rumble. Heyho.

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Epilepsy, Janet & KitKats…

I was supposed to be in Krakow last week. Instead, I was at home, hiding in my family tree where I made a discovery of another epilepsy-related death in the family. This time on my mother’s side of the family. The not travelling thing is something I’m going to have to deal with quite soon. My confidence is just shot to ribbons.

Anyway, I’ve written before about GGG Agnes, she died during a seizure in 1914. GGG Agnes was my Dad’s great-grandmother. Janet, my Mother’s second cousin, died during a seizure in hospital in 1933. I wonder just how different their deaths were. What was it like to die at home in 1914 compared to a hospital in 1933?

Today, I spent another long day at the hospital, thankfully courtesy of a scheduled appointment, rather than my usual drop-in-uninvited-via-an-ambulance visit. More scans, more blood tests, more eye examinations, more questions. No more answers. No reasons as to why my body attacks itself. Nothing to help my mind understand so that it stops attacking myself.

I wonder if answers are what its all about though. I mean, it only really matters if the answers enable a resolution? Understanding the why is only part of the story. The next chapter is fixing the why; the prequel is prevention. For me, though, I need to understand the why. I don’t mean the “why me?”; I just mean the why. It’s the only way that I can sort of come to terms with my situation, even if I may never be able to change it. I participate in clinical studies fully in the knowledge that any discoveries made are unlikely to be able to help me, but they could change the life of another human being.

The consultants went to great lengths to explain that I didn’t do anything to give myself MS. On an intellectual level, I kinda get that. I want to get that. But, there is a niggle. An itch that can’t be scratched. With my epilepsy, I spent a long time believing it was the solely the result of a terrible skiing accident. My brother spent a long time believing it was solely the result of him breaking a snooker cue on my head when we were kids. My parents never offered an opinion and it wasn’t until I found out they knew about GGG Agnes that I understood their lack of opinion. In actual fact, it turned out that I was genetically pre-disposed and that in all likelihood the near-death experience in the Alps had simply triggered the faulty gene. It is virtually impossible that the snooker cue incident was the cause.

There are at least two incidences in my family tree to confirm the genetic disposition to epilepsy. I wonder how common it is to have at least one incidence of death by epilepsy on both the maternal and the paternal side of a family? Of course, knowing these relatives died during a seizure is different from knowing how many of my kin suffered from epilepsy but died from an unrelated cause.  I find myself looking through the death certificates amassed for my family to see if I can find anything that may point toward MS. I know its probably a futile exercise and I know that it would be virtually impossible to prove a link, but I feel like I have to do it. It’s a kind of compulsion.

MS can be genetic. You’re apparently more likely to get MS if someone else in your family has it or had it. So, I wonder if I will find that link, whether the gene is inherited or whether I’m just bloody unlucky. If both conditions are inherited then perhaps it’s a good thing I can’t have kids.

It’s interesting, to me anyway, to look back and see what kind of medical research was going on throughout the ages. Given that 1914 and 1933 seem to be featuring heavily for me at the moment, this is part of what I found (paraphrased of course!).

Most of the interest of the day seems to centre around electroencephalography. In 1912, a Russian physiologist, noticed the electric changes in the brain during experimentally induced seizures. In the same year, Pravdich-Neminsky, a Ukrainian physiologist, published the first animal EEG and two years later the first photographs of electroencephalography of a dog were published. Important discoveries in electroencephalography were made during the 1920s and 1930s. In 1924, Berger, a German neurologist, recorded the first human electroencephalogram. His results brought controversy and scepticism within the scientific community, but he was not ignored and his results were confirmed later. In 1932, Berger reported sequential postictal EEG changes after a generalized tonic-clonic seizure, and in 1933 he published the first example of interictal changes and a minor epileptic seizure using an EEG. Also in 1912, Alfred Hauptmann was able to synthesize phenobarbital, one of the first anti-epileptic drugs. Fascinating times and great strides forward being made in the clinical side of epilepsy, unfortunately, the social side was still lacking far behind.

So far, in my family research, I’ve not been able to find any clues as to whether MS has played a part in any of my family history. Apart from those deaths during seizures, there has been a worrying amount of heart disease, one “burned to death” in 1834 (must investigate whether she was attached to a stake at the time – the dates would fit with epilepsy=witch!) and an unfortunate dock worker who was hit on the head by a falling wooden beam. Nothing suggestive of an MS symptom, but there is much out there still to research about my relatives…

So, I’m left knowing I need to spend more time in the hospital next week. More tests! I do wonder if its worth it sometimes. I wonder how things would be if I didn’t have MS in particular. I don’t know what “normal” should feel like anymore and I miss knowing myself. It feels like the questions are designed to catch me out. Yes, I’m so very very tired, but I don’t know how much of that is related to the MS, depression and epilepsy! Why aren’t the doctors able to answer that question? Why does it seem to be down to me to know that answer? It’s frustrating in the extreme. I didn’t go to med school. I don’t know the answers and whereas I’m fully aware there is very little definitive info that can be given to me, I want to hear the consultants’ opinions and reasonings as to what is going on. It’s hard to know there are no answers. Phrasing questions like “could it be that…?” – well, of course it bloody well could be anything, but I don’t know! That’s why I’m here asking you the questions!! It’s like saying to me “well, you’ve highlighted there is a problem here, but how would YOU fix it…”.

Ok, so I’ve established I’m frustrated. Tired and frustrated actually. Stressed out? Yep, tick. Burning red twice a day? Yep, tick. However, on the positive side, so far at least, I’ve not burned to death; I’ve not been crushed by a log (my bro tried that one, when we are kids – didn’t work then, won’t work now); and I’ve discovered the wonders of Dark Mint KitKats. I don’t think you’re supposed to eat as many as I have, but to date, my hand-to-mouth co-ordination has not been affected by either MS or Epilepsy, so I’m bloody well going to make the most of it!

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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.

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Soul Mining…

I sponsor a goat. Her name is Ellen and she was rescued, along with 2 little friends, from a life of agony because of a disability. Ellen is a Nigerian Dwarf goat. Her illness is not hidden, but she was all but abandoned because her front legs are deformed. Thankfully, the owner of the farm where the goats were, agreed to hand them over to the Barn Sanctuary and she is being well looked after and having braces fitted to help with her deformity. Ellen is a lucky little goat. Someone saw her life and knew it needed to change.

I also sponsor, through Marine CSI, a Great White shark. Seamus isn’t deformed, but if you get in his way, you very well may be. Such is the nature of a shark to have to bite to know if it can eat you. The water is his domain. You’ve been warned.

It has been a very strange few weeks. Things just don’t seem right. It’s hard to describe what I mean, it seems that nothing is sitting comfortably for me and my feet are getting itchy. For once, that’s nothing to do with the MS! As well as dealing with all that comes with MS and epilepsy, sufferers also have to deal with the everyday ailments the same as the rest of the population. For me, this week anyhow, that’s been the dreaded stomach bug. There is no need to go into detail here, but I know you all get it. Well not necessarily the stomach bug, although…Anyway that, the fatigue which has moved in, unpacked and shows no sign of leaving, and the general feeling of unease, has left me unsettled. I don’t know what is wrong.

I don’t know if anything is wrong! Perhaps that’s the issue. Maybe everything is just too darn familiar. Familiarity breeds contempt, right? That could well be it. I know that I can’t take a deep breath, I know that I can’t shift the fog and I know that I can’t put my finger on what the problem truly is. Or maybe I just don’t want to. I search my soul a lot. It seems to be never-ending, but I guess that’s the whole point of a soul right? I search and look and pry and dig deep. I turn things over and put things back and return to familiar hunting grounds and see the same things. My soul is where I go when I need to research. My soul is my personal Google. I’ve been here before. Many times. The aching chasm of my soul that’s shrouded in mystery and yet alive in glorious, unashamed technicolour. It’s rich and deep and yet can be mean and shallow. It is comforting and frightening in equal measure. It sits on my sleeve and gossips with my heart. Then it retreats after it’s whispered its fears and joys, leaving me with nothing to grasp.

My soul. The keeper of all my secrets. My friend, my conscience, my harshest critic, my biggest fan, my brightest light and my darkest shadow. There lie all the answers. I know that because I believe, our souls – yes, all living beings have one – encompass everything you can’t touch or see but just know instinctively is there. Every book, every article, every column ever written about so-called self-help, tells how it all starts within. And that’s all well and good, but the only way you can start that process then, is to know what is within. Know thyself. I can’t remember right now who that phrase is attributed to, I think it was Socrates that probably coined it, but it could have just as easily been Plato. Thinking about it, neither of them probably said that phrase at all but their writings will have been a long version along the lines of how you can’t really know anything unless you know yourself. But, how can you truly know yourself? (That last sentence was put there by me, I don’t think either of them actually questioned it, but willing to be corrected on that point).

If we are ever evolving and I think we are. We all act and react differently to different stimuli and as we age our tolerances change with us and so we are always becoming something new. If we are changing all the time, then how do we keep up with who we are. Let’s take me for example. This time last year I was reeling from an MS diagnosis. Everything I thought I knew about me and my body was suddenly ripped away from me by those 2 letters. I was numb for a bit. Highly emotional for a bit. Terrified virtually always. Angry, stunned, confused, depressed and lord knows how many more adjectives could describe the feelings that coursed through me. I never returned to the Kirsty I was the day before. I tried to recover me. But that me was gone and I’m left to shape a new me. Ever evolving. What I knew to be true then, doesn’t seem to be true now. How I used to react to different situations and different people has changed. I used to know how I would react. I only know now that I won’t react in the same way.

Sounds a bit confusing and it is. A bit like the Titanic, my soul doesn’t want to give up all its secrets. I can find new ways to search it and develop techniques that help me deal with its depths and caverns, but it seems unwilling to yield to my constant requests for it to help. I know the answers are there, but I just can’t seem to dig them out. So, my soul has swallowed every old version there ever has been of me and so all that I need to know is there somewhere, but I don’t have the right combination of search terms to unlock them. Soul searching is hard to do. Any search will always uncover something you’ve worked hard to forget and bury. Soul searching will always point you in the direction that you need to go, but it doesn’t give you the strength to put your boots down on that path and walk it. Soul searching is best done when it’s been sat with your heart. That’s when the answers are closest to the top. Your soul can give you the directions, but it can’t make you take the journey.

The soul is never going to say the answer is 3 doors down on your left. (Although it could be, if that’s where your heart has told your soul it’s desire is…). The soul is going to give you the piece of unmoulded clay and an idea of what the finished article could look like. It is still up to the current you, you as you are now, to take the search results and action them.

As a matter of interest, as well as Ellen and Seamus, I also sponsor Amur Tigers through WWF, Rhinos through Care for Wild, dogs through Dogs Trust, a young girl through PlanUK, plus I donate to UNICEF and help remove plastic from the oceans through donating to 4Oceans and my cats consist of one adoption and 2 rescues. They all have souls and their souls all whispered to my heart.

And yes, I stole the title for this post from The The. Credit where credit is due.

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MS, Tomatoes and Jackfruit…

About 3 hours ago, I took my very first dose of MS medication, alongside tablets for epilepsy and for depression. Apart from the fact I rattle every time I move, I also now look like a tomato and feel like I’ve eaten a pound of Carolina Reapers. I am on fire! My face feels like it is burning and a red flush has appeared head to toe. Apparently, this is normal. Awesome. (Insert appropriate level of sarcasm). I absolutely won’t be leaving the house today, but if you happen to see me later in the week then please feel free to snigger but if I see you giggling, I may have to unleash the nuclear arsenal that is now at my disposal.

Many of you are probably aware that I’ve been changing my diet to see how that would/could help me feel stronger in order to deal with killer tomatoes – sorry, multiple neurological conditions. I thought I would give you all a little update on how that’s going.

About 3 weeks ago, I more or less completed my transition to a plant-based whole food diet. I have cut out meat, fish, dairy and eggs and have greatly reduced my dependence on processed foods. My kitchen is in a permanent state of chaos but I’m loving cooking again. Experimenting with different flavours and textures. I’ve tried not to be too evangelical about my new eating regime and I’m ok if the odd splash of milk or egg has crept into my food through the ingredients in another ingredient (think dried spices, condiments etc), so I won’t call myself a vegan more that I’m eating a vegan-like diet. Anyway, I’ve digressed. So, dietary habits changed, I went to Krakow for the weekend with my non dairy-, meat-, egg-, fish-free Mother. I had previously decided and agreed with said parent that I wouldn’t force my eating habits on her and if that meant eating the aforementioned foods then so be it.

While I did manage to avoid meat in the main and fish entirely, dairy and eggs did feature quite heavily. As I was eating them, I can’t say with my hand on my heart, that I’d actually missed them. This surprised me. I thought I would really start craving them and go back to my previous habits, once I’d savoured a mouthful of scrambled eggs in butter or cheesy pasta sauces. What actually happened sealed my confidence in my decision to change my habits.

After 3 days of eating as I used to, my skin erupted in large, hard, sore lumps under the skin on my face (not having much luck with skin just now!). My digestive system went into complete revolt and I spent a full day in the hotel unwilling to be far from a bathroom. I had to leave my Mother to her own devices and I’m relieved to say she managed not to cause any diplomatic incidents. To me, this could only have been a reaction to the rich foods that I’d spent weeks eliminating from my diet. An egg and cheese overload, previously welcomed with open arms by my stomach and skin, was no longer welcome. I was actually craving something green and fresh.

Who’d have guessed?! Me, a person who previously had very little control over food and happily would eat whatever was there, no longer wanted or craved that food. Even if this new way of eating doesn’t have any demonstrable effect on any of my neurological conditions, I now have evidence that proves, to me at least, that it is actually better for my system. It is less inflammatory on my innards and it doesn’t cause my skin to be sore to the touch and lumpy!

While it only took my irritated insides a couple of days to settle down once it had some fresh fruit and veg, my skin took about a week to stop being a moody teenager and start getting back to, what is now, my new normal.

With a new sense of why I had changed my diet, I attacked the kitchen with a vengeance. Homemade this, homemade that, freezer full, grocery bill cut, I felt a bit smug. Well until the sheer volume of washing up hit me! Oh, how I long for a dishwasher! I decided to experiment with a completely new ingredient for me – Jackfruit. I’d tasted it when out for dinner with a friend but had no clue what it actually was, where you go to buy it and how to cook it. Google can definitely be man’s best friend. Jackfruit is a species of fig that is native to South India but is found throughout the tropical regions. Explains why it’s not often seen in Scotland. Apparently, it’s also the national fruit of both Bangladesh and Sri Lanka! Who knew? Not me.

Having established that the most Scottish-friendly way to get the fruit is from a tin and sourced a location for buying it, I brought this wondrous new food into my home. My first experiment, while not disastrous did provide me with a few lessons. Unlike other tinned fruits, jackfruit takes a bit more prep once its decanted. Don’t buy the kind in syrup but go for the one in brine and be prepared to have your mind blown. Ok, so that’s an exaggeration, but once I got the sizing and timing for the cooking, even if I say so myself, my BBQ Pulled Jackfruit (think pulled pork texture and look) was nothing short of awesome. An unmitigated triumph. A bit of a faff, but easy and a longer cooking time than I would have liked, but oh so worth it. Sweet, sticky, smokey awesomeness on a plate.

So while I wait for the test results that I talked about last time, MS and Pizza. Here we go again…,and now knowing that I’m being tested for Ocular Sarcoidosis (yes my medical file just keeps getting bigger), I shall comfort myself with my new find and probably overdose on BBQ Pulled Jackfruit.

I think tomatoes will be absent from my meals for a while though…

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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.

 

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Dear brain…

Dear brain,

For 30 years now, you, my body and my soul have been fighting. My body and soul are exhausted from the constant feuding, the intermittent bloody battles and the never-ending war. You have waited, until this time, to play your trump card. You held the hand that no-one saw coming. You were nurturing another neurological affliction alongside, perhaps marginally overlapping, my epilepsy. Well played.

The past 3 weeks have been the most frightening of my life. You still refuse to give up your secrets though and confirm what, exactly, you have in store for me next. My sight is failing – will it return? The nerves I so desperately rely on are scarred and battle weary – will they ever heal? You know the answers, dear brain, please reveal them.

I’m tired, I’m scared and I don’t know how to deal with this. The irony is not lost on my soul. You, brain, control this. You, in all your wonder and secrets, hold the key to everything that I know as “life”. What did I do to wrong you so? Are the 23 tablets I took this morning to help you, along with the 3 more I have to take tonight, not enough for you to know I want you to heal? My soul needs you to heal, my body can’t live without you.

I’m on my knees and begging you now. I’ve tried hard to be strong these past decades. I know that I haven’t always been able to meet your expectations and I know that I have often shrouded you in a dark depression. I haven’t had the courage to ask for help when I needed it most and I know that must have caused you pain. Please don’t punish me.

I resolve, here and now, to be better. I want you to heal, I need you to be well and I will do whatever it takes to make that happen. Please don’t take my sight. There are so many wonders in this world that I’ve been too afraid to explore. I want the chance to see them.

I don’t want to have to use this voice recognition software, I don’t want to be afraid. I know that my sight can be restored, maybe not to as good as it was, but enough to do the things that still need to be done. I want you back brain. Remember how it used to be for us? It can be like that again, just tell me how. Show the doctors what you need. Please.

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Jigsaws and how do you know its the right part?

I’m full of how? How do you know if something is right? How do you know if the piece fits? How do you make a choice, and not just any old choice, but the right choice? The best choice? The good choice? So, the box I’m thrusting my hand into in order to choose the new parts for my life; how do I know its the right part?

Trust your gut? Trust that hidden, internal feeling? That instinct? How can you trust your gut when the only good decision it’s made recently is whether or not chocolate counts as dinner; and even that was a bit of a questionable one. Apparently chocolate isn’t a sensible, nutritious, filling dinner option. Who knew?? My gut thought it was. My gut enjoyed it actually. Is enjoyment enough to make it a good choice, though?

Joking aside, I’ve heard most of my adult life, that the way forward is to trust your gut. Listen to that small, internal voice that gives you a direction. In hindsight, I’ve often wished I’d listened to my quiet little communicator, the one that’s tucked away in a part of me that isn’t yet tainted by that thing we call life. Sometimes, it’s hard to hear, though, don’t you think? There is so much white noise in this life, that it’s not always immediately easy to close that off and tune into instinct. Or maybe we can actually always hear our own vibe, but don’t trust it. Rather we question it and find ways to negate the suggestions. Sometimes, we find it easier to listen to others and their opinions, rather than take full responsibility for our own desires. I think it makes it easier to accept when it doesn’t work. There is someone else to blame. “Well xyz told me to do it this way…, I thought it was a bad idea and it turns out I was right!”. We then relieve ourselves of the responsibility. It’s a bit of a cop-out, but we’ve all done it to a lesser or greater degree.

For me, all the how questions feed my procrastination habit. I know that I should have done things differently a long time ago, my gut told me that (through bellyful of chocolate)! Yet, I got bogged down with all the how?, what?, why? and when? that meant that instead of listening and acting; I sort of heard and found excuses not to. The only question I chose to answer faithfully, was the who?. It has to be me. I’ve palmed many parts of my jigsaw off onto others. I’ve given endless advice on what someone else should do with their particular issue, problem, windfall or situation. But I have not taken full advantage of my glorious insights into the workings of the world and pointed them at myself. Oh hell no. I’m quite happy to tell you how you should live your life but I’m sure as sh*t not going to apply all that common sense and wisdom to my own! Actually, that’s not strictly true. I don’t think I’ve ever told anyone how to live their life, although I have thought it on multiple occasions, but I’ve never shied away from giving my thoughts/opinions when asked for them.

So why is it easier to fix someone else’s issues, than it is to deal with your own? Well, that’s easy. You don’t have the responsibility of action and consequence. If you offer advice, the recipient has the choice to act upon it or not. At that point, you are absolved of guilt, erm, responsibility. “On your own head be it”. I’m self-aware enough to know that, on occasion, when I ask my friends “what would you do?”, I’m hoping they don’t come up with a totally tangible action that any argument against would make me seem more ridiculous than I am. If I get an awesome response, I like to pretend I didn’t hear it, in order to continue with my procrastination. And yes, I’m perfectly well aware that this is daft. So, my way around that little pebble on the path is to not ask for help. I stick to asking the really important questions that involve billions of dollars to fix (I don’t have that therefore I can’t fix it), billions of people to fix (ok, slight exaggeration, but you get my drift) or existential questions to which there is no right or wrong answer. See, no flies on me!

Yet, this cunning little plan of mine hasn’t got me far. This not asking for help malarkey has seen my drugged up to the eyeballs on anti-depressants, terrified of any questions (actually answers) that relate to “me” and stressed to high heaven and back. If I don’t ask the questions, I don’t have to hear the answers, so I don’t have to change anything and so my comfort zone isn’t breached. Yet, I will quite happily jump out of a plane at 12,000 feet or cage dive with apex predators in murky waters. I’m very proud of these achievements. My gut demanded I did them, demanded that I followed through and swore blind I would enjoy them. My gut was spot on. When I get to the jumping off point that marks the switch from conscious living to whatever comes next, those experiences will be on the 7-minute highlight reel, that apparently plays.

So, how do we choose those pieces and how do we know they are the right pieces. There is the don’t pick any new pieces and change nothing road to the left; then there is the don’t know, don’t care, just grab the first piece you can road to the right; or the tune into your own vibe, allow your own instincts to flourish and sing and go with them road that lies straight ahead. Easy right?

Of course it’s not!! When has anything worthwhile ever been easy?! I know you’ve heard that said a million times before (yes, as well as a procrastinator I also tend toward exaggeration). It boils down to allowing yourself to trust yourself. Why should the advice you would give to the one you love most in the world, be any different to the advice you would give yourself? Get your best friend, your parent, your lover, your partner, your lawyer(!), your pet (I talk to mine, I’m certain they give awesome advice) to turn your what if back on you. Answer the question as if it’s not your life and your responsibility but a desperate plea from a friend. See what answers that gives you.

While you turn that little nugget over in your mind, think about this. There is an infinite number of jigsaw pieces in the box. Don’t overthink it. Pick it up, turn it over and around quickly and tune in. You do know what’s right. If you aren’t ready to dive in head first, then hold on to the piece for a while until you are ready to make the changes. Just don’t hold on to it too long. If you do, you may crush it and what could have been perfect will become an “I wish I’d…”. Then guess what, you go back into the box and you pick another piece. At least you will know you’ve tried.

I had that conversation with a very dear friend just last night. It revolved around simply knowing that neither of us wants to get to that 7-minute playlist and find something missing because we didn’t have the courage to try it. Another friend commented today that you don’t need to have all the pieces so to see the big picture. How very true. Do you like what you see in your evolving picture?

Fear of the consequences or of failure are a natural part of life, I think. Was it Edison that said he hadn’t failed, rather he’d found a thousand ways not to create a lightbulb. Or words to that effect. The point is, not to give up. We aren’t all meant to run at the same speed, some of us are better at being a tortoise than a hare. Who gives a rats ass if you don’t want to jump out of a plane? That was my dream. It doesn’t have to be yours. If you want to be the person who designs knickers that don’t ride up your bum, have seams in uncomfortable positions and actually do feel like you are going commando – please do! Undergarment design is not on my list of talents, but I sure as hell know the benefit of a comfy pair of pants!

Explore your talents (pieces); practice what gives you pleasure and eat chocolate in the knowledge that it doesn’t hinder the ability of your gut to steer you right.

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Epilepsy and Travel…

I’ve travelled to some far-flung places in my life so far. I’ve seen a lot, done a lot and met a host of superb people. All while living with epilepsy.I’ve never had a seizure while I’ve been travelling. Maybe it’s just coincidence, but I think it’s because I’m happy. I’m not the most confident of people, but I push myself out of my comfort zone so that I can experience the incredible. Having epilepsy doesn’t have to mean giving up on life. Having epilepsy doesn’t have to mean shelving all hopes and dreams. For me, experiencing the incredible is made all the sweeter because it means my epilepsy hasn’t beaten me down and taken over my life.

My life. My choices. My decisions. My brain. My body. My hopes. My dreams. 

In a way, epilepsy has made me a stronger person. I could have chosen to let it be the major deciding factor in all my options, but instead it’s a consideration and no more. Yes, of course there are days, sometimes longer, when I’m scared. I don’t love having epilepsy. The scars I have are real and some are a bit more than just skin deep. Sometimes the fear is overwhelming. Sometimes I’m scared to leave my house. But in the years that I have lived with this life-altering condition, I can honestly say that the good times have far far outweighed the bad. It isn’t always easy to face your fears, swallow the panic and put a smile on your face, but it is worthwhile.

Gansbaai. I’m living my dream. I’m about to go cage diving with Great White sharks. Sharks have fascinated me since I was little. I don’t really know why and I guess it doesn’t really matter, but for as long as I can remember I wanted to dive with them. Having epilepsy meant that it was not really going to be a viable option to deep sea dive, I wasn’t able to find a dive centre that would take me and my epilepsy on. It’s dangerous for multiple reasons. I could have lied in order to get my PADI, but I won’t put someone else’s life in danger just so I can get my own way. But, as it turned out, I was able to do a surface-cage dive. 

The water was murky, the weather, moody. The perfect day, in my opinion, to be in the domain of an apex predator and the subject of years of fascination. I was not disappointed. Steel grey body, white underbelly and coal black eyes. The first of the Great Whites was gliding past the cage, idly eyeing us behind our bars. Sleek, graceful and 4 metres of pure power. I was barely able to contain my excitement at being within inches of a shark in his natural habitat. My attempts at underwater photography were woeful, but in my mind I can still see every detail. Was I thinking about epilepsy? Hell no. 

I’ve just returned from 5 days in Moscow. Five wonderful days. I’ve seen some of the sights I wasn’t sure I’d ever get to see in person. St Basil’s Cathedral and Red Square to put a name to just two. I saw them with some of the fantastic people I met in Moscow, who gave up their personal time so I could experience just a smidgen of the city. Was I thinking about epilepsy as I wandered the streets with my new friends? Hell no. I was immersing myself in the sights and sounds of a vibrant, pulsating city of contradictions. The magnificent architecture of Lenin’s Library just along the road from the huge, gaudy, glass-fronted modern hotels. The fairytale splendour of St Basil’s opposite the massive, modern, GUM shopping centre. Did I think about my epilepsy whilst marvelling at what I’m seeing? Hell no.

Having epilepsy and travelling are not mutually exclusive. In the same way as having epilepsy doesn’t exclude a person from being a productive member of society. One life is given to us and it is up to us what we choose to do with it. I live alongside my epilepsy every single day. Sometimes it taunts and torments me. Sometimes it beats me up and leaves me bruised and bleeding. Often, it lies dormant. I’m lucky. I’m going to suffer seizures my whole life, whether I live with that or whether I just exist, is my choice. 

I choose life. I choose the incredible. I choose experiences. I choose vibrancy. I choose laughter. I choose joy. I choose.

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Epilepsy and Travel…

I’m writing this sat on a park bench, bathed in beautiful sunshine in Kraków, Poland. I am alone, I am epileptic and I am unafraid.

I’m looking out over a flat playground where only the birds are laughing. It’s a delightful sound. Soon it will be replaced by kids, but now I’m content to listen to the sounds of nature. Content and hopeful, I’m reminded again of how lucky I am. Of just how many of these moments I’ve experienced in my life. Having epilepsy has in no way diminished my life. I simply won’t let it. Yes, it gets me down sometimes, yes I feel afraid sometimes, yes I feel depressed sometimes. None of that is unique to having epilepsy.

The day after I landed in Kraków, I headed into the Tatra mountains which form the natural border between Poland and Slovakia. My intention was to stay in Slovakia for a couple of days before returning to Kraków. The weather was terrible. Wet, foggy, stormy and the stunning vistas I was hoping for were there, but hidden from view, so I returned to Kraków the same day. However, I was still able to ride the funicular up to the top of Gubałówka mountain which lies above the small town of Zakopane on the Polish side of the border. Drinking grzane piwo and buying tourist tat. Grzane piwo is a mulled beer that’s served hot, in the same way as mulled wine. I’ve never seen it anywhere else, but it’s popular here. Having epilepsy does not stop me from trying new things, seeing new places and experiencing wonder.

I’ve talked about ‘moments’ before. The vast majority of mine have happened while I’ve been travelling. It saddens me that sometimes a diagnosis of epilepsy is not accompanied by a strong reinforcement that it is not the end of the world. It is not a case of ‘abandon all hope ye who enter here’. Epilepsy becomes part of your life, in much the same way as any chronic condition does. Epilepsy does not remove free will. Epilepsy is not the end, merely the beginning of a new chapter and the chance to discover a strength within that some others never find, because they don’t have to. I’ve used my epilepsy to motivate me. I’ve taken those wayward electrical charges and plugged them into my soul. They light up the areas in my soul that crave wonder, that crave travel, that crave moments. Yes, sometimes the lights go out and I feel the darkness, the fear, the terrible crushing feeling around my heart. But, when the lights begin to come on and I can see more clearly, then life comes into focus again.

One of my favourite travel moments, if it’s at all possible really to rate moments, was when I did a tandem skydive over Lake Taupo in New Zealand. Me, my boyfriend and my bf’s brother all suited up, in a small plane, 12,000 ft in the air, each of us strapped to an instructor. My turn. Sat on the instructors lap, legs dangling outside the plane. Just rock forward he said. The adrenalin rush at that split second as we left the plane and entered that point of no return was nothing short of euphoric. Fear was replaced by freedom. Complete freedom from everything. Nothing mattered. Why would it. I laughed, giggled and waved at the guy videoing the jump. Happiness, freedom, adrenalin, euphoria rushed through every single fibre in my being. I felt truly alive. Cobwebs were being ripped from my mind as I fell through space. Time didn’t matter. Why would it. Epilepsy didn’t matter. Why would it. It was just me, being. When we landed, I was jumping up and down, I felt free and I didn’t want that feeling to end. I wanted to fly again. The feeling is addictive. I think I’ve been trying to recapture those brief moments of pure, unadulterated joy ever since. Free as a bird. I think that jump enabled me to feel what it’s like to live in the moment. The past doesn’t matter, it’s done. The future doesn’t matter, it will take care of itself. All that truly matters is the moment, the present.

I’ve never experienced a seizure while I’ve been on a trip. I wonder if that’s because I don’t feel stress travelling, only curiosity and wonder. I’m glad that I was encouraged to believe that epilepsy could be part of my life without it taking over my life. I’m grateful for the people I have in my life who support me and who provide the network that catches me when I fall.