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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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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!

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MS, Epilepsy and Cooking…

There has been carnage in Kirsty’s kitchen the past couple of weeks! I have made a few conscious decisions based on my health situation and it’s time to follow through.

Those who know me well, know I like my food. I enjoy my food and I prefer it with either coffee or wine. Yet, for the sake of my health and to feel like I have a modicum of control over my body, I have chosen to change my lifestyle and that includes reviewing my diet.

I have decided that I am going to switch up my previous carnivore ways and move toward a wholefood, plant-based eating plan. In case you’re wondering, this means no meat, no fish, no dairy and no eggs. Why? Why? Why? I hear you cry (unless of course, you’re already eating this way and are whoop, whoop, whooping instead)! Let me explain…

Just a couple of weeks ago, I was delivered news that put my world on it’s head. In all honesty, I was (& probably still am) devastated by the news that I had MS. Brave public face aside, I was/am crushed. All I could see were dashed dreams & tattered hopes. But, I chose me. I’ve decided not to admit defeat to a disease. I’ve resolved to do what I can do to make positive changes in order to have the strength to meet the challenges ahead, head on. One of the few aspects of life I can change is what I eat. My brain does have an input (think cravings) but it also desperately needs proper fuel to fight disease.

So, for me, moving toward a wholefood, plant-based way of eating is a way of having some control and an attempt to make myself feel better and stronger. The benefit to animals and the environment, I have to admit, are secondary in my thinking at the moment. This is all about me, me, me. I’ve known for quite a while now that my lifestyle didn’t really do me any favours, so regardless of whether the changes to my diet and the fact I’m working out with Edinburgh Fitness Solutions have any affect on my neurological afflictions, they should have a hugely positive impact on how I feel in myself. 

So that’s the “why”. The “how” is where I’m at!!

Changing a long-standing habit isn’t easy. Especially if, like me, you find it a struggle to “give things up”. So, I decided that I’m going to do things a little differently. This is where it is useful that I’m doing this for myself and not because I’ve been told to by any medical professional. As far as I understand, there is no proven way to eat yourself out of MS. So, that gives me both a comfort blanket and a safety net. It also means I don’t have to give up habits overnight. I’ve done my research and I’ve decided that for me, my body, my lifestyle and my health, trying a wholefood, plant-based way of eating could be beneficial. There is no guarantee that it would work for everyone, but I want to know if it will work for me. So, I’ve been transitioning.

I’ve sought out and spoken to people who choose to be vegan (yes, that’s the generic label), to find out their experiences and get any hints and tips. I’ve done some research and am fully aware that being vegan doesn’t automatically make you healthy. And that’s why I’m also reducing the amount of processed foods I eat and why chaotic carnage reigns supreme in my kitchen! One of the people I spoke to advised me not to think of it as giving up certain foods (cheese, milk & eggs being my biggest worry) but to regard it as an opportunity to try new flavours, textures and foods. That way, you will be less likely to feel deprived and that you’re somehow missing out. This is working for me. 

So, I’ve been going through this transition for about 3 weeks now. It’s going well, I think. I’m rediscovering my taste buds and some foods that I previously decided I didn’t like, I’m finding that actually when I try them, they’re not so bad. Meat and fish have been the easiest to let go of. The meat surprised me, as I thought of my self as a major carnivore! Cheese was a little more of a struggle, but through trial and error I’ve found an alternate that I can happily live with. Milk in my tea – wow. Tough!! Coffee, if it’s good quality, I can happily drink black, but tea? No way. Tea with soya milk? Bleurgh! Tea with oatmilk? No way Jose! Tea with hemp milk? Not a chance! Tea with coconut milk? Like hell!! Black tea? Well I’m getting there. I’m finding that rooibus is working black and my favourite, Earl Grey, if it’s good quality and bizarrely decaf, then yes, I can do that.

Most folks don’t know that I’m moving toward this new way of eating. I’m not being evangelical about it (there was no way I was missing out on a surprise Afternoon Cream Tea on Saturday) but the more people find out I’m choosing this way to eat, and the more eateries I discover to cater for this way to eat, then all the better.

The last blog I wrote stated “I choose me”. I stand by this. I’m doing this for me. So far, most have been supportive and those that haven’t? Well that’s fine too.

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Dear brain…

Dear brain,

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

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

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

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

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

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

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Epilepsy and Choices…

As suspected, the blood tests revealed nothing. So, I’ve had to give more of my blood for more tests. These ones basically just to confirm the last ones. I feel fobbed off.

Options though. I have options. We’ve always got choices. That’s true. So, no-one is bothering to explain what my options are, so I guess I’ll have to work out what they are for myself and then make some choices. Epilepsy has not robbed me of my ability to make a decision. Although, Epilepsy has never been a factor in how good a decision I make!

I’ve done the right things. I’ve been through the medical profession and have got not very far. The biggest issues are: epilepsy (doh), headaches, depression and sleep issues.

Well, let’s see. They’re obviously all linked. I don’t have 4 individual problems, that can be sorted with 4 different sets of meds. I have a inextricably linked set of health problems that need to be regarded as a whole. My initial feeling is to go back to basics. Strip myself clean and start over with the knowledge that I have.

AEDs. Anti-Epilepsy Drugs. Anti-convulsants. Choice: keep taking them or stop taking them. What are they currently doing for me? Well. No-one knows. Are they preventing the excess electricity physically manifesting into a full blown seizure more often than I currently do? No-one knows.

Lack of sleep, to me, is the biggest issue. I’m so very tired all the time. It certainly doesn’t help with the headaches and I suspect it’s a pretty big contributing factor to my depression. It’s also a contributor to my epilepsy. When I’m tired, I’m always more prone to fitting. I’m tired all the time at the moment. What choice do I have here? Sleeping pills? Are they a choice? They’re a consideration. Truthfully, they’re not a road I want to travel again. They scare me. What else can I do though? What alternative is there to drugs when it comes to sleep? I need to do more study. I need to do more investigation. There has to be alternatives to a drug induced sleep. I don’t know if it will be dietary, but that’s definitely a route I need to investigate.

To my mind, even in its broken state, lack of sleep, good quality sleep, is my biggest problem. Everything else is linked and would be more manageable if I could get a handle on my sleep. But how? How do I do that? Nutrition? Exercise? Drugs?

I’m exhausted and exasperated. I don’t know what to do next and I can’t think clearly in order to make a decision. Helpless is how I feel. Helpless. That makes me feel pathetic and that’s a feeling I don’t like one little bit.

So, I’ve got some decisions to make. Decisions that could affect the rest of my life. They can’t be taken lightly. I’m scared.

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Epilepsy and Castor Oil…

So, the waiting is over the EEG results are in. It was abnormal. So, the waiting starts again. Now I’m waiting for an appointment to go for a sleep-deprived EEG. Then I have to wait for the results, then wait to see the consultant, then do I get to make a decision? A sleep-deprived EEG is a new thing for me, so I have to see its introduction as a positive way in that it may help really pinpoint what’s going on in my brain. The part that makes me a little angry, is that it was apparently strongly suggested that I have one of these EEGs several years ago and I was never made aware of this. It, rightly or wrongly, reinforces for me that my epilepsy does not seem to have been taken as seriously as it could have been. I hope that changes.

Anyway, I digress.

Someone once told me he could “cure” me by putting a castor oil pack on my stomach. Ludicrous I thought and said! Or words to that effect anyway…

The theory behind the castor oil cure is generally attributed to Edgar Cayce, who believed epilepsy was caused by lesions on the lacteal ducts in the abdomen. He believed that if hot castor oil was applied regularly to the stomach, then the combination of oil and heat would cure the lesions and hence stop the seizures. Cayce was an American mystic, who was believed to possess special abilities in healing, amongst other things. He is often quoted in the field of alternative healing. Castor oil is often used as a massage oil and is credited with many health benefits. I’m not so sure that it can cure my epilepsy, especially if my epilepsy is genetic, but I do appreciate the benefits of a good massage!

For centuries doctors, psychiatrists, philosophers and mystics have tried to pinpoint the causes of epilepsy. In 1825, two French students of psychiatry, Camille Bouchet and Jean Baptiste Cazauvieilh, tried to statistically establish the influence of heredity on the condition. They found that out of 110 epileptics, 79 had no relatives who were afflicted with any form of nervous disease and 31 who had a family history of epilepsy, insanity or “hysterical relatives”. Bouchet and Cazauvieilh also tried to determine causes of epilepsy in 69 patients. They found and published that while 26 of the patients had an unknown cause of epilepsy, a staggering 21 had Fright as the cause, 10 Sorrow and for 3 patients, well, their epilepsy was caused by Masturbation! A second set of stats published in 1836 by another French clinician found similar results in 67 patients. Fear was the cause attributed to 35 patients, Drunkenness caused 6 cases, Debauchery another, while Wrath and Misery accounted for 2 cases each! Fear or fright is an interesting one. In the early 1800s, it was believed that if a pregnant woman witnessed a seizure, then her baby would be born epileptic because of the fright the mother got.

The 19th Century was, what is referred to as, the Golden Era of French medicine and it was Jean-Étienne Dominique Esquirol, who gave us the terms Grand Mal and Petit Mal to distinguish between the different seizures witnessed. Bouchet and Cazauvieilh were both students of Esquirol. It’s interesting that these terms are still used today to describe seizures along with Absences, which again has its origins in the French language and can be attributed to Esquirol, I believe.

Epilepsy has been around for as long as man. Indeed, it’s been written about since at least 2000 B.C. when it was attributed, in Akkadian texts, to the Hand of Sin brought on by the god of the Moon. Babylonian texts dating to 1790 B.C. recorded that any slave sold that displayed symptoms of epilepsy, could actually be returned to the seller and the money paid refunded! St Valentine, yep, him of Valentine’s Day fame, is probably the best known of the Patron Saints of Epileptics (apparently there are about 40!). He is also the Patron Saint of Love, Lovers, Young People and Happy Marriages. He was beheaded in 269 A.D. on, yep, you’ve guessed it, 14th February…So, epilepsy has been known about, talked about, studied, feared, reviled, stigmatised, misunderstood, written about and lived with throughout time. Epileptics have been possessed by demons, considered imbeciles, regarded as insane and generally maligned since time immemorial and in the grand scheme of things, people’s perception of epilepsy and those who suffer with it, has only started to change relatively recently.

It’s only taken 4000 years of the written word to get us to this period of enlightenment. Wonder what the next 40 centuries can bring…

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Epilepsy and Sharks…

I was watching a programme on the Discovery Channel about Steve Backshall’s attempt to swim with the Great White sharks. The line he says at the start of his series , Swimming with Monsters, struck a chord with me. “I’ve devoted my life to adventure”.

I haven’t. It made me think about what I have devoted my life to. I came to the conclusion, pretty quickly, that I’ve devoted my life to wishing for adventure. It would be pretty easy to say that having epilepsy means that I can’t have a life of adventure. Easy to say, but untrue. It would be an excuse and I’ve tried hard never to let my epilepsy be an excuse for anything. Indeed, I have had many adventures and I’ve loved every adrenalin rush I’ve deliberately experienced.

So, I have a decision to make. Increase the meds; stop the meds; leave the meds as is. I don’t even know how to go about making that decision. The wrong one, potentially could be disastrous. The decision as to whether to skydive, the decision as to whether to shark dive, the decision as to whether to climb a ladder. Well they are made in the time it takes for my beating heart to decide whether to take the next beat. In fact, they’re not really decisions, they’re foregone conclusions. If you’re putting the opportunity to get into the sea with a Great White shark in front of me, then I can not resist. Lean, grey, elegant, streamlined beautiful sharks. But the three choices I face now? I don’t know where to start.

Not taking medication when you need to, could lead to an increase in seizures and an increase in seizures leads to an increase in the possibility of death. The words of my consultant. What if I don’t need the meds? Staying on the same dosage would, seemingly, neither increase nor decrease the likelihood that I’ll have a seizure. Non-one can say for definite whether the meds are actually working. I used to believe that while they don’t fully control my episodes, they do reduce the number I have. But do they? And at what cost? Increase the meds? Why? I’ve been on higher doses, I still fit. What about different meds? I listened to the consultant and yes, there are newer drugs, but not better ones. I try to do the research, but I don’t really understand the science and there seems to be just as many horror stories as there are success stories.

Maybe I should view the decision as an adventure? No one knows what the end result of any of the scenarios is going to be. Same as I didn’t know if a great White was going to penetrate the cage or whether my parachute would open in the skydive. Calculated risks though. The odds were in my favour. I don’t know so much about the meds decision. If I write on a form that I have epilepsy and at the same time say I don’t take medication, then I suspect the odds of me being able to do what I want to do are not going to be great. If I say I am medicated then the odds get better. But at what cost.

Meds, to me at the moment, are like a rogue shark. There are rogues in every walk of man and mineral. I don’t know what they are going to do to me and I don’t know how much of a risk I’m prepared to take. I’m having a hard time because there are no definites. No one can tell me if the drugs work or don’t work and if they are working, to what extent are they working. So many unknowns. Should I go with my heart or my head. Adventures have always been ruled by my heart and tempered by my head. I know there are things I can’t do, because, and this is the only thing the medical profession do actually agree on, I do have epilepsy. I won’t be able to deep sea dive – too dangerous for me and for others. I won’t be able to join the armed forces or emergency services – fine, I don’t want to join. It’s unlikely that I’ll ever drive – a combination of not being able to prove I’m controlled and my fear that my epilepsy maims or kills another living soul. Getting my skydiving licence is a bit iffy – there’s a grey area. I’ll never be a pilot – don’t want to be. I’m sure there are other things my epilepsy could stop me from doing, but go be honest, if they haven’t jumped out at me by now, then they’re unlikely to. So, other than the aforementioned there’s not much I can’t do. Should I choose to.

Choice. We all have choices. Even doing nothing is a choice. I can’t really explain why I’m finding this decision so hard to make. I haven’t talked it over with anyone either. I never really do talk these things over. I wonder what that should tell me? That I know I’m wrong and I don’t want the error of my ways to be pointed out to me? Or because, it’s my decision, and that means the responsibility really does lie with me. I can’t lay the blame at anyone else’s feet. I can listen to opinion but I find it so very hard to voice the turmoil in my mind.

As I write this, I’m feeling a mixture of anger, disappointment and fear. Pretty negative emotions. I’m scared of making a decision and I’m scared of making no decision. My decision-to-be feels so insignificant in comparison to some of the traumas my friends are living through. I feel small and weak-minded and I’m taken back to the knowledge that I’ve lived my life wishing of adventure and desperately afraid of disappointing people. So, I disappoint myself. Daft eh?!

My choice, ultimately boils down to drugs or no drugs. Sink or swim. No sharks or sharks.