0

Is your battle my battle?

I agree. Fatigue is a big part of this post. I’m tired. I’m emotional not hormonal. I’m grateful for what I have, but feel short-changed. I feel guilty for feeling that way.

I read about a lady battling to get her husband the support he needs to live with his mental health problems. He’s homeless because he can’t be around his kids, he is being over-looked by an over-whelmed healthcare system. His kids know he’s homeless but don’t understand why he isn’t being helped. He doesn’t tick the right boxes so he isn’t a priority. He is deteriorating on a daily basis, his wife is desperate to help him but is being blocked at every turn. Yet, she keeps fighting. She fights every day.

People like her give me hope for a future that I struggle to see. She’s doing it for her kids. She’s doing it for her husband. The side effect of that, is that she is doing it for me and for you too. What society as a whole, I think, tends to forget, is that we are are ALL a single, unexpected event away from the situation this lady finds herself in. She didn’t marry a man with obvious mental health issues. She didn’t have children with a man with obvious mental health issues. Yet a single circumstance sees her on a 9-year battle to get help for him. I feel humbled by her battle and in awe of her strength.

And yet.

I, like so many of us, can’t comprehend her situation. Can’t see past our own circumstances. Is this wrong? On so many levels it feels like it is. I feel guilty because I can’t give the wider issue that she raises the due attention it deserves because I’m wrapped up in my own. Aren’t we all? On another level, I feel grateful. I feel such a sense of relief that I don’t have to live everyday raising small humans to be decent citizens while trying to explain to them how society, as a whole dare I say, is letting their father down. Is it enough to think “that’s terrible, I wish there was something I could do” and move on to the next story? Well we all know the answer to that. At least I hope we do. Yet, it really isn’t that clear cut and simple, is it.

My issues, my mental health problems seem minor in comparison. I equally hate myself and commend myself for saying this. My situation is different. Completely different. Yet, the facts remain. I have epilepsy, I have MS, I have depression (& before the pedantic police pull me up, yes I know I’m supposed to say “suffer”), I have mental health issues and I struggle to see a way forward. I’m still functioning in society though and for this I feel grateful. Or am supposed to feel grateful.

I just don’t know that a society by which it’s ok to let a man and his family suffer for 9 years because the man doesn’t fit the right boxes to get him adequate help is the society I want to live in. It seems all I can do to try to change that is continue to help the lady raise awareness of her situation and to vote. Oh don’t get me wrong. A huge part, the vast majority indeed, of society are good people. People who are shocked and saddened when they hear of issues like this. That’s a good thing. Yet, I feel that we are gradually moving toward a time where this lady’s circumstances are the norm.

How very sad.

My own issues, when compared to this lady’s pale in comparison. But they are still valid. They are my day-to-day. And I suppose that’s what we all have to remember. It’s all relative. I can’t compare my situation to hers because it’s so very different. I can sympathise, but struggle to empathise. Perhaps because I really, simply just don’t want to imagine what it must be like to walk in her shoes.

I feel tired. I bet she does too. I feel emotional. I bet she does too. I’m battling my own demons, I bet she is too. I am utterly fatigued. I wonder if she is too. Her kids are suffering more than a child should. I don’t have to deal with that. Her husband is suffering more than a husband should. I don’t have to deal with that. She is battling hard to raise awareness. I wonder if I do enough of that. She is battling every day. I wonder if I have the strength to do that. Her pleas for assistance from the relative bodies are, effectively, being ignored. I struggle to raise to the relevant bodies my pleas.

The differences are pronounced, but the similarities can be found.

The moral of the story, in my eyes at least, are epically biblical. “There, but for the grace of “xxx”, go I”.

Another disjointed outpouring from a fatigued and emotional mind.

4

Tired?

It’s been around 3 months since I last wrote a post. It’s not been the best 3 months of my life. I seem to say things like that a lot these days. I don’t think I’ve had a great 3 months since before the MS diagnosis. Nothing has been the same. Everything is different and I’d be lying if I said I was finding coming to terms with it all has been easy. I thought I was possibly starting to get to grips with things finally when the epilepsy episode premiered in November last year. Armistice Day to be precise.

I haven’t written because I’ve been scared. Scared of the consequences of truth. In my experience, the truth is often the hardest to hear but the most useful. The odd lie to save a hurt is fine, in my book, but ultimately lies lead to nowhere happy. But my truth, I’m having issues uttering. I can’t say that I really know why. I said it was fear of consequences but I think that is only part of it. I don’t want people to be more afraid for me than they should and I don’t want a blog post of mine to be the catalyst that throws a person into thinking that I’m suicidal. I’m not. Don’t get me wrong. Dark, troubled thoughts plague my mind 24/7, but am I actively planning my end? No.

Everything going on in my head is exacerbated by fatigue. I’m not tired. At least not tired as most folks relate to it. A few hours sleep ain’t gonna fix this situation. You know what it feels like to be tired right? Long days at work? Small children? Overdone the gym? Gardening too much? You know that tired. That tired when you sink into bed and sleep soundly and feel refreshed the next day, right? Oh I know, everyone is tired these days. No-one rests enough, there is always a deadline to meet or a task to be done and lord forbid it doesn’t get done! I hear everyone saying how tired they are. Yet, I wonder, are they tired, like I’m tired?

A long time ago someone said to me after I’d complained of being tired, that I had no idea what “tired” is because I don’t have children. Apparently, only those who have kids are capable of being truly tired. I beg to differ. I still don’t have children and I definitely know what it feels like to be so exhausted you can’t see straight. Can’t think straight. Can’t function in normal daily life. I know it because that is my daily life. That is the gift that MS has given me, one of them anyway.

Tiredness has always been with me because of my epilepsy. I’ve complained of tiredness a lot over the years. Yet, now, I’m not tired. I am utterly fatigued. Mentally and emotionally overdrawn in every account. This fatigued isn’t something that will be fixed by a cup of hot chocolate and a night’s sleep. This fatigue comes after the sleep (if you can sleep that is) and appears before you’ve got out of bed. Sometimes, it feels like you can’t get out of bed. It’s too much. Everything is a trial. Everything is an effort. Everything. Having a shower, getting out of bed, getting dressed, you name it. The fatigue is all-encompassing. It controls every aspect of your life. I don’t want to cancel the evening out, but I simply haven’t got the energy to go.

There are days when I simply can’t think straight. Tasks that used to come quickly, easily and even naturally to me, I have to think about and really focus on completing. The fatigue is front and centre the whole time. There is no pill I can take, no amount of Red Bull is gonna give this girl wings and, though I rest when I can, no amount of downtime really helps. It is soul-destroying trying to live with this level of fatigue. Utterly soul-destroying.

The MS diagnosis changed my life in ways that I couldn’t have even imagined. Over the past 3 months, my level of acceptance of my situation has depleted rapidly. I’ve tried really hard to stay positive and see that having MS isn’t the end of the world. God knows I’ve tried. I spent years coming to terms with epilepsy. I truly don’t think I have it in me to accept, embrace and live alongside another life-changing condition. I follow umpteen folks on social media who seem to be able to deal with their MS. I do wonder, given what I know about my situation, whether they are telling the truth, the whole truth and nothing but the truth. Trying to spread positivity is fantastic, it really is. Yet I can’t apply it to my situation. And part of the problem is the bloody constant fatigue.

I actually deleted my FB account a few weeks ago. There were a couple of main reasons. Firstly, I was totally fed up with reading about the wonderful life of others. Yes, I’m completely aware that it’s not all sugar and spice and a lot is covering up a much harder truth. But I just couldn’t stand to see it. The second reason was seeing the bitterness creeping into my own posts. I could see what I was writing was oozing it. I didn’t like that and so I deleted the account. Do I miss it? No, not really. It’s a shame I don’t get to connect with some people as often, but I can put my hand on my heart and say, no, I don’t miss it. I’m left with other forms of media though and I’m able to contain my bitterness on those forums.

I was posting a bit about my fatigue. I thought by writing it down I might see a way through it. That didn’t work. I feel consumed by it. How do you accurately portray that? I’m trying to explore this with a neuropsychologist. It’s become really apparent to me, that I need help to deal with this diagnosis and find a way to accept it and live with it successfully. I’m crying as I write this, because, right now, I simply can’t see a way through it. I can’t see how I can regain Kirsty. It seems to me she has gone.

To be fair, I cry a lot these days too. Being so fatigued you can’t see straight isn’t conducive to dry tear ducts.

This post has been tough for me to write. It represents an opening of a window in the outer wall that surrounds me. My neuropsychologist, I may call him NP from now on, asked me why I don’t accept the fatigue I feel as physical, but rather as emotional. I couldn’t answer him, because I don’t know. It’s something I’m trying to explore. He wants me to try to accept that the fatigue really is real and it affects me in a physical way. That, obviously, is the high-level overview, there is obviously a lot more that has passed between me and NP but perhaps I’ll get to that…

I know this post is disjointed and I know it’s because it’s been really emotional for me to write it, but there you go. I was going to re-read, correct, amend and make it flow better, but you know what…I’m tired and I simply can’t be bothered. Perhaps there will be a part 2 sometime!

The next time someone tells you they are tired before you make a wisecrack, be sure they aren’t covering up something much bigger.

 

0

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.

1

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!

2

Dear Brain…prt2…

The last time I wrote an open letter to you, brain, I was on my knees and begging for answers. I sure as shit did not like the response.

I’m back again. Well, not that I really left. We’re intrinsically linked. I can’t live without you, but I do find myself wondering if you can live without me. I’m finding it hard to keep up with you, you see. You just never stop. You never give me a moment’s peace. That’s why I’m writing this at 11pm on a Tuesday night. The voices just won’t shut up!

Oh, not those kinds of voices. No, I’m not quite there yet. But someone rabbits incessantly all day, all night. It can only be you, brain. I need to find a name for you. I can think of several that are apt, but none of them look good in print. It seems bizarre talking to you in this way. Because I’m not really talking to you, I’m talking to myself. You are me and I am you. Could drive a person insane trying to figure that one out. But does make me wonder how I can shut myself up…

My brain. Lobelia.

Lobelia presents me with many challenges. She particularly likes to ask me difficult questions in the wee small hours. She knows I need to sleep, but apparently she doesn’t care. Fatigue leads to problems for my epilepsy. Lobelia knows this. Lobelia has known this since she short-circuited when I was 15. Please don’t get wound up on the gender identification I’ve placed on Lobelia. For the sake of clarity – I am woman! Lobelia is going to be a woman too, whether she bloody well likes it or not. Anyway, I digress. Lobelia was triggered into electrical action when I was 15. It’s amazing what a combination of a faulty gene and a skiing trip can do! Maybe Lobelia blames my physical body (which she controls) for this. I don’t know that answer. She only seems to like asking questions at inopportune moments (hours); she’s not really one for giving answers.

Anyway, Lobelia knows that fatigue and epilepsy are not great bed-fellows. One of them really should take the spare room. But still, she insists on making them co-habit. And to make things just that little more interesting, she introduced MS into the mix. MS is like the mother-in-law from hell who moves in, just as your already fractious relationship is teetering on the brink. Lobelia has got a really sick sense of humour. If I am her and she is me, then how come we can’t get along?

Lobelia is average weight – around 3lbs. She is about 15cms long. And she lives the phrase – “good things come in small packages…and so does poison”. She allows me to function on a day-to-day basis, but the price I pay for that is heavy. She leaves me exhausted, but won’t let me sleep. She relies on drugs to soften the hard edges of the living arrangements she created herself; but not the soporific type. She asks me questions that have no answers; she drags up my history and replays it; she loves to play the “what if…” game. She tells me just how tired I am and then sinks me into a depression that is immeasurable. She uses that state to get more drugs. Well, we call them medications. They’re all legal and above-board. Even though one of them gets delivered to my house in a grey package and it always seems a little weird to have that happen. I find myself looking around furtively to see if anyone is witnessing the transaction. I’m glad I don’t live on a street corner!

Is this how it’s going to be for the rest of my days? Lobelia knows that she will live forever. Actually, we all live forever. Forever, can only be determined by an individual. Your forever, isn’t my forever. Has anyone ever promised to love you forever, only to leave you 5 years later? I rest my case. Cynical? Perhaps. Best ask Lobelia. Not that she’ll give you any answers.

Dear Lobelia. I am your physical shell. I hold in one place all of your nerves. I know you’re having issues keeping hold of the myelin sheath around those nerves. I know that according to Pakkenberg et al. the length of myelinated nerve fibres in you Lobelia = 150,000-180,000 km. That is a helluva lot of fibres. I know you started with around 20 billion neocortical neurons and I know you lose them at a rate of around 1 per second. I don’t know how quickly you can replace them. I know you pose these questions to me late at night. You throw them in there along with the frivolous musings and the rehashing of conversations I had 20 years ago that could have gone better. I just don’t have the capacity to think about these things anymore. There is no room. You can remember the random facts from a different life, but I can’t remember the birthday of my best friend. You want to torment me with the failings of a previous inning, but I can’t continue to function at a high enough level to keep the current one successful. Lobelia giveth and Lobelia taketh away.

Lobelia. We need to reimagine how this is going to go. What could it be like? What say you let me sleep for a few hours? Hold your questions and accusations for a dedicated time slot during the day? Will that work for you? I know, I know, I’m asking the question and you won’t want to answer. Think about though, please. My sanity depends on it.

What Lobelia doesn’t know is…I’ve donated her to research when my forever comes to a close. Hehehehe.

0

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.

0

MS & Marionettes…

Today, I stepped off the bus and I didn’t know if my legs were going to support me. Tomorrow, I’m going back to the hospital.

As I write this, there is a red, angry rash covering my whole body. It’s caused by the medication I’m on and it happens twice a day. I know it’s the drugs and I know it will pass, but there is a tiny sliver of me that wonders if this will be the time when it doesn’t go away. The rash is accompanied by a burning sensation that radiates from my head downwards. It truly feels like I’m being incinerated from the inside out. The itchy feeling makes me want to claw at my skin. I just want it to stop. I try to see the funny side. I look like a tomato and feel like one that’s being grilled. I feel a bizarre empathy for griddled foods. But it isn’t funny and I’m not laughing. Quite the opposite.

I feel like a puppet and the marionettist hasn’t a clue what they’re doing. I walked from the bus stop to work and with every step, I felt a weakness in my legs. The only other time I really feel my muscles is after an intense burst of exercise. Then it’s generally pain. Today, finding words to describe it adequately is hard. My legs felt weak to the point it was almost funny. The sensation was that of overwhelming weakness but no pain at all. I’m fully aware that my gait is all over the place and I’m supremely conscious of every other person hurrying to get on with their day. I don’t hurry. I can’t hurry. I’m scared to hurry. The invisible puppeteer with his invisible wires is leading my legs on a merry little dance that has no rhythm and no grace.

I know where I want my legs to go. I see the path in front of me and I’m trying to walk in a straight line. I know I’m not. I’m lurching almost from side to side. An old ankle injury seems to be bearing the brunt of my weird walk and I can feel a yelp from the joint. Not an out and out scream, but more that it’s reminding me that it has a valid weakness and it can’t really cope with the extra weight that is being applied at a weird angle. I don’t know that I have ever been that completely conscious of any part of my body before. Other than my eyes. A year ago.

My eyes have been feeling a bit off kilter too. They seem to leak a lot more fluid these days than ever before. I think it’s what people generally call tears. I feel fairly certain that I’m losing more than my fair share of them and I wonder if tears form part of the myelin sheath that’s meant to be surrounding my nerves, but is, in actual fact, leaking out of my tear ducts at a sometimes alarming rate. I’ve always worn my heart on my sleeve, but I was never a great crier. Until recently. Well, I say recently, but I mean in the last year or so. Don’t get me wrong, I’ve never been adverse to the odd crying session. Thankfully I’m not a wailer when it comes to the expression of tearful emotions, rather they escape silently, steadily flowing down my cheeks. I want to go back to the days when I wore my emotions on my face, but they weren’t accompanied by these hot little tears that are born of frustration, anger and fear. The problem with my eyes isn’t the tears though. I feel a pressure behind my left eye that makes it seem like it will explode at any given second. The fear that this is the beginning of a repeat of those terrifying weeks a year ago is bubbling through me. I wonder (or maybe hope) that it could just be a sinus issue and that’s what I’m feeling. Nothing to do with MS, but instead, a fairly common affliction that the vast majority of us have felt at one time or another.

I also have a, sometimes overwhelming, feeling of sadness. I’m still working that one out.

The feelings of muscle weakness that I have so inadequately described are accompanied by a terror that I try to pretend isn’t there. What if. I’m scared I’m on the verge of a relapse. I’m terrified because I don’t know how that feels and so can’t be certain. I don’t know if the weakness is just because I’m so very tired. All the time. Tired. I don’t know if I’m so focussed on every little thing my body goes through, that I am making a mountain out of a molehill. If I’m being really honest, when I try to describe these feelings to people, the blank looks and the sometimes fleeting expressions of disbelief make me feel fraudulent.

I can’t describe it. Others can’t understand it.

I used to understand my body. Epilepsy is an almighty pain in the ass, but I knew what to expect. I knew how I would feel. I didn’t always see it coming, but compared to how I feel every day now, I’m glad of that. It would hit me like a ton of bricks, leave me battered, bruised and depressed and then bugger off until it stored up enough energy to electrocute my brain again. Of course, I’m describing that in the past tense, but it is ever-present. Always in the background. Always watchful for the next chance to become the puppeteer.

Through the whole “woe is me” and the tears, I try to find the positives. My legs did support me today. I felt like a newborn-Bambi on ice, but I did make the short trip from the bus stop to the office. And I also successfully completed the return journey. Some would say I was worried over nothing, Unfortunately, that couldn’t be said until after I’d achieved the short walk to the office and the subsequent activities of the day. It went through my mind every time I sat down, that the last time I have stood up under my own steam, may have passed. Then I remember that I’m a drama queen and get over myself. But it is stored away in the cupboard that houses the electrical circuits.

At age 45, I knew me. At age 46, I’m a stranger to myself. What is it they say about strangers? They’re just friends we don’t know yet. It would seem that this stranger is going to become a friend I will have a love/hate relationship with!

Perhaps though, that will give me more cheerful things to write about!!

0

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.

0

Short, but not sweet…

I’ve been monitoring my thoughts. Isn’t that what we’re all supposed to do these days? I’ve noticed several things. Multiple Sclerosis is there in my head every minute of every day. I brush against a wall and it’s because of the MS and if this is happening now when I’m 46, how bad will it be in 5 years, 10 years? There is a small, concurrent thought that maybe I’m just clumsy. Maybe my clumsiness is not MS and is just that. Clumsiness. That thought isn’t carrying the same weight as the other. I think about the future all the time. I used to be obsessed with the past, now it’s what will happen. On some level, I know that I can’t predict the future. On another level, I know I have MS. I know I can’t predict the course of the MS in the same way that I can’t see the future, and sometimes I think that if I don’t think about the MS then I won’t have to think about the future and I can go back to the relative safety of raking over all the mistakes in life I’ve made and all the triumphs and phenomenal things I’ve seen and done. That then makes me think that I would be denying the MS and therefore not preparing myself for the future. But I don’t know the future so I can’t prepare anyway, can I? This is going on in my head every day. Every single day. I can’t remember the last time I didn’t think about MS.

At the same time that this is all going around in my head, I’m trying to function in the other parts of my life. I’m trying to deal with work, with decorators, with finances, with relationships, with my wayward, single ginger eyebrow hair. Nothing else has stopped because I have MS, but the amount of room in my head to deal with it has shrunk. Sometimes, I try to be mindful. Allow the thoughts to come and then just go without actually thinking about them, only acknowledging them. I try. I generally fail. Sometimes, when I try to be mindful, other thoughts creep into my head. Dark thoughts, truly dark thoughts. I don’t want them there. When I’m tearing myself up about the MS, those dark thoughts don’t seem to have the ability to get in, its when I stop thinking that they pervade. Weird eh.

I’m in the final stages of the flat being sorted out. Dry rot banished, new kitchen installed and the decorators have been here for 8 days and have about another 3 days to go. I’m scared that when it finishes, I’ll have more time to dwell. Dwell on the MS. Dwell on the fear, ponder a future I can’t see in a state that I can’t be sure of. The alternative is that the dark thoughts will find their grip. I’m finding it increasingly hard to know that it might not all be doom and gloom in the future. For a while, I was able to remain fairly positive that ok, I have Multiple Sclerosis and I have Epilepsy but it could be worse. I still say that out loud because it makes everything less scary for others. The truth is that I am utterly terrified. It’s been about 11 months since the whole round of doctors, hospitals, scans and drugs kicked off and it has been about 16 months since the numbness down one side of my body appeared. It doesn’t feel that long. It’s all still so very raw. I sometimes think that I’ve processed it all and bits of it are tucked away in little parts all over my mind. It’s not. It’s there, right there. Front and centre. The focus. Everything else in my life is playing second fiddle and I can’t dedicate the headspace required to deal with those aspects. I feel like I’m no longer in control of my own life.

I function in a heightened state of total stress. All the incredibly positive changes I made to my lifestyle have fallen away and I’m not taking care of me anymore. I can’t be sure, but I wonder if it’s because I don’t see the point. Have I given up on some level? I don’t know the true answer to that. I think about it a lot, but I don’t know the answer. I told myself that I was making all the changes because it would make me strong enough to fight this bloody disease. At the time, I was able to make myself believe that while I might not win the war, I was bloody well going to be victorious in at least some of the battles. That fight in me seems to have disappeared. My candle has blown out.

Yet, I’m writing about it all. Is this acknowledgement going to be enough to find the spark again and ignite it? Or is the darkness that has pervaded my existence for most of my adult life going to gain its foothold like never before? I can’t deny that I have let a lot of things slide. I don’t know that its because I don’t care anymore, I think its just more along the lines of there seems to be very little point. Am I just depressed? Sure as shit I’m depressed. Am I wallowing? Good question. Yes, probably, a little. But isn’t wallowing in mud supposed to be good for cooling the blood? The metaphorical mud here, being the thoughts. I think that’s probably pushing it. In my situation, the mud is far from glorious and I think wallowing in the hollow for too long when you’re not a hippo might end up being regrettable.

So, I’m tired, I’m depressed, I ache everywhere, the bunion appearing on my left foot is bloody sore and all in all, right now, I will admit to being pretty low.

Ah well. Shit happens right?!

2

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.