3

What next…?

It gets to the stage when you seriously question just how many times you can pick yourself back up.

10 days ago I was travelling home after spending the weekend with my oldest friend. My parents had kindly picked me up and we were driving north. A few miles outside of Edinburgh, I started to have a seizure in the back seat of the car. My head banged hard multiple times off the car door. I was taken straight to A&E where it took some time to persuade me to leave the car and when I finally did I started the second of the seizures. This time I thrashed on the gurney. Truthfully, I don’t remember any of this. I suspect the story I’ve been told has been softened up a little. I did spend 3 days in hospital. I did have 3 seizures and I did give myself a small bleed in my brain as proved by a CT Scan that I don’t remember having.

I was discharged from hospital a week ago. I don’t remember too much about any of that, but I do remember starting to feel really unwell as time was going on. When it became a bit more apparent to me that there was something not quite right with my face, I called NHS24 & was given an appointment at a hospital.

Long story, short. I have been diagnosed with Bell’s Palsy. Half my face is paralysed; one eye doesn’t close; my ears are constantly ringing and yet there is a sense of deafness in my right ear. I can’t speak very well. I can’t eat very well. And without putting too fine a point on it, I’m pretty scared.

Apparently, there isn’t really anything that can be done for Bell’s Palsy. There is a small chance that steroids can help if they are given soon enough after initial diagnosis, so I am currently on a high dose of them, but there are no guarantees. I’ve been told that it’s hard to go out with my face looking the way it does – reassuring! I’ve also been told to try to do it as soon as possible – terrifying! I’ve been for more scans, so perhaps that counts as being in public?! I’ve also got another appointment tomorrow, so maybe that is good enough to reinforce the “get out there” mentality?

A few weeks ago, I wrote about wondering whether I’d done any of “this” to myself. Here I am again. Where to go from here? At what point do I get to feel sorry for myself without inviting the comments about being a victim? Surely, it’s ok to feel a bit hard done by, no?

Epilepsy. MS. Depression. Bell’s Palsy.

Can that not please be enough? Please! Apart from the headaches and the pain, I feel a bizarre kind of emptiness. A sort of “what’s the point”? I don’t quite know the purpose of these struggles. What am I supposed to be learning? Isn’t there an Idiots Guide to… I can read instead? Who the hell have I upset so much that these afflictions are my punishment?

Ah, here they come. The tears. I can blink them away from one eye, but the other just streams. I know it’s going to leave my eye red, sore and swollen. Yet, there is nothing I can do about it. Just something else, that I have no option but to put up with. When does it end? When will it end? What can I do to make this all go away?

Yep, feeling sorry for myself now. Who cares? I’m not strong enough to take this and if I want to dissolve into buckets of tears then where is the harm in that? I’m not hurting anyone by doing that and maybe I just need to know that it’s ok not to be ok. Right? We get told that don’t we? That we don’t have to be strong all the time and that it’s ok to be scared sometimes?

So, here I am. Another affliction I can’t control. Another solitary journey. Another route I can’t explain to another and more feelings of inadequacy.

I don’t know how many more times I can pick myself back up.

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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.

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!!

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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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If sleep is for the weak…

No sleep for me again. My levels of fatigue at the moment are incredible but not in a good way. I want to sleep all the time and not because I’ve been burning the candle at both ends. I have a visit to the MS nurse this week and I’m really hoping she can suggest something that doesn’t come in a pill form to help me. I’m terrified of sleeping tablets and I’ve been on the losing side before, of a drug that was just meant to invoke mild drowsiness as a side-effect to dulling the effect of some of my MS symptoms. Coffee is my best friend at the moment.

Apparently though, I’m “strong”. I get that a lot. It sometimes makes me inwardly laugh as it seems my highly strung out, totally stressed and complete terror manifests itself as strength…in the eyes of others anyway. I wonder if my complete inability to acknowledge my fear and ask for help comes across as strength? Surely not. Perhaps it’s the fun I poke at myself and my epilepsy that makes people think I feel the same about my MS? I don’t.

God knows, when all this kicked off I tried really hard to be positive. Really hard. I changed my lifestyle to try to give myself a better chance of beating the odds, it didn’t last. I think the fatigue plays a massive part in this game. The more tired I am, the less convinced I am that I can scupper the negativity and regain the rosy view.

So that all got me to thinking invention and reinvention.

Invention, I suppose, is best described as the creation of something that didn’t exist. Then reinvention is taking something that exists and changing it to create something new. But, if necessity is the mother of invention, then what is the mother of reinvention? Evolution?

Take the wheel. We are often told that we should not try to reinvent the wheel, but was the wheel ever actually invented or rather did it evolve from something else? Around 5000 years BC there wasn’t any knowledge of a wheel per se. People – think Egyptians – used other methods to move objects. Logs for example. Logs are round(ish); wheels are round. So did the use of logs precipitate the evolution into wheels? The invention of the wheel can not be attributed to a single person. Around 3500 BC, across several cultures there is evidence of a wooden wheel being attached to carts. Then the wheel evolved further into the multitude of different “wheels” that we have today. As populations grew, trade increased and with other developments, I guess the invention of new circular objects, for example cogs, was required. Evolution is then the mother of reinvention, yes?

How does this relate to me then? Well, my life is evolving. Rapidly. These changes mean I need to make adjustments too. Is it time for a reinvention of myself? I don’t know. I’m rambling. It’s the tiredness…

The last few weeks have seen a new set of challenges. My Mum is in hospital, my Dad is using a washing machine unsupervised and the shower has started shooting water from the wall instead of the shower head.

The camel is, once again, being stacked with straw.

Sleep is for the weak…coffee is for the strong!

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.

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Rambling weebles

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

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

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

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

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

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

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

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

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

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

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

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