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Epilepsy and Friends…

I have the best friends in the world. You do too.

My friends, my close friends, are small in number. I know a lot of people, I like a lot of people, I have a lot of people in my life that I care about. A massive part of my jigsaw is made up of those people and I wouldn’t be without them. Yet, there is an inner-circle if you like. I think we all have that inner-circle of people in our life. These are the people that aren’t necessarily always near us physically, but their presence and essence support us completely. I rely heavily on my inner-circle to be truthful with me, even when that honesty is brutal and sometimes hard to hear. It makes me love them all the more, because I know that, in their honesty, they love me.

A good friend of mine recently left her job. Things weren’t what she hoped they would be, so she summoned up her strength and she left that which was making her unhappy. She was true to herself and her desire to give her family the best life they could have. It was a tough decision for her, really tough. Yet, rather than stay unhappy, she chose to do something positive about her situation. She made her life-changing decision, while still finding the time to be strong for me when I needed her. She is another of my amazing friends who has been there for me through thick and thin. She is another who makes me question my truths.

A good friend of mine recently lost her job. It came as a massive shock to her, but she’s pulled herself round and has decided to take the opportunity to travel and see some of the world. One of the things that she said to me, really resonated. She said that she never thought that she would put so much of her sense of self down to a ‘job’, but she did. This friend was one of the angels that I didn’t know I had. She’s been one of the friends that’s always still been there when I come through one of my dark periods of epilepsy and battles. That one statement that she made, has got me thinking about what my sense of self is made up of. How much of that is influenced by epilepsy, how much by fear, how much of my soul is misplaced. Am I true to myself or am I true to what others expect of me?

Regardless of how often I try to make myself believe that epilepsy is only a tiny piece of who I am, I know it’s not true. Epilepsy doesn’t run my life and it doesn’t define me, but it has played a significant part in shaping who I am. I’m quite a sensitive person. I think about things a lot, I dwell far too much and I emotionally feel my way through life. I find the negative actions of others’ really hard to shrug off, even if their intentions are good. Having epilepsy, for me, is a very personal battle. I have lost friends through it. Even one or two that were part of my inner-circle have stepped out of my life because of it. They left a gap and a probably a bitter lesson.

But, I do have epilepsy. It is part of my life. It is a consideration in everything I do. My friends know that a trip to a rugby match, a trip to the cinema, a trip to the pub, could all result in a trip to the emergency room. In fact going anywhere with me could result in an impromptu medical excursion. I know that when I get out of bed in the morning, I might end up going to bed in a hospital ward. I know when I get dressed up to go to a wedding I might end up wearing a modesty gown with my dignity hanging out the back of it.

Am I true to myself? Yes, in some aspects of my life. But in others, if I’m brutally honest with myself, then no, I’m not being true. I’m living the life that’s expected of me because I don’t want to let others down and I don’t want to see disappointment scrawled over their face when they look at me. I don’t want to have to explain myself. Being true to myself would be hard, but ultimately so much more rewarding. I’d be happier, I’d be fiscally poorer, I’d be emotionally richer, I’d be fulfilled, and I won’t go to meet my maker with a lifetime of what-ifs. Sounds like a no-brainer really, so why is it so hard?

I’ve supported my friends in making their life-changing decisions. I’ve actively encouraged them to live a life of joy. So why can’t I take my own advice? It would be easy to say its because of the restrictions I have because of epilepsy. It would be easy to say that and I could probably convince all but my inner-circle that it’s true. But I would know its a lie. It would be easy to say its because I can’t afford to, but can I really afford not to?

In order to be true to yourself, you have to know yourself. In order to know yourself you have to push out of the comfort zone and test your limits. You may fly and you may fall but your friends are your support network and I have no doubt that mine would catch me.

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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 Mont Blanc…

Picture the scene. Azure skies, shimmering burnt-orange sun, pristine white snow glistening under the sun’s rays. The majestic peak of Mont Blanc as the backdrop. Yes, I’m on a school ski trip.

Courmayeur. Nestled beautifully on the Italian side of the Alps in the Aosta Valley. Beautiful. At 15 years old, I’d never seen anything like it. I remember clearly my first glimpse of the mountain range and how I was struck at the sheer enormity of it. We’d travelled via coach and ferry to get here and, for me, it was totally worth that horrendous journey. So, we’re decked out in our ski-attire, we’ve been fitted for boots and skis, we’ve got our identifying yellow hats with a red bobble – the epitome of high fashion. We’re skiing! First few attempts on the baby bowl went pretty well. We were divided into small groups, attached to an instructor and dispatched to the mountain ski runs proper. My excitement was palpable. I was loving every moment.

So, we’re at the top of a run. The girl in front of me falls and I swerve to avoid ploughing into the back of her. All of a sudden, my skis are pointing straight down the mountain and I’m off on the run that will change my life forever. I knew I was going too fast, I knew that I was no longer on the marked run, I knew I could see too many rocks, I knew I was way outta my league. I couldn’t slow down, I couldn’t get my legs to snow plough. I decided that I’d try to slow myself by sitting down. Big mistake. My skis flew over my head. My poles left my side. I started to snowball through the rock outcrops. I’m head over heels. Arse over tit, as my Dad would say. The mountain tires of its game with me and spits me onto a pile of snow.

I lie there. Motionless. Then I giggle a bit and decide I better go find my skis, poles, boot and dignity. The movement sends the instructor down to me. I’ve covered quite a distance. He’d packed off the rest of the group with another instructor and he came to get me. He was a bit shocked that I was alive. According to him, I shouldn’t have survived. I looked back up to where I’d started and I saw the all the rocks and ice that I’d tumbled through. He said he was about to radio for air-rescue to get me off the mountain when he saw my bobble hat move. He checked me over, saw that I was in actual fact ok, then went to collect my belongings which were strewn over the mountainside. It took hours to traverse back up the side of Mont Blanc and rejoin my group. I was awarded Most Spectacular Fall of the Season and I thought no more about it.

For years I believed that fall caused my epilepsy. In actual fact, it probably just triggered the gene I carry that pre-disposes me to the condition. In truth, I’ll probably never know. I have skied since. I went on a school ski trip a year later. You will notice that at no point did a helmet feature in the story. This was the ’80s and thinking back I can’t remember seeing anyone on the mountain wearing a helmet. It was a few years after that fateful trip that I was diagnosed with epilepsy and the skiing incident became a suspect. I didn’t ski again until I was 29 and in New Zealand. My bf at the time was a very good skier, our friend who was travelling with us at that point had never skied before in his life and then there was me. Nervous but excited. Bf was dispatched to go do his own thing and be free. Friend and me, stuck together and laughed so much. We had great fun. He skied forwards, I skied backwards and we had hysterics. Adrenalin coursed through my body and I felt truly alive. My confidence was restored and I added that day to my list of moments.

I love those adrenalin-filled moments. Every sensation is heightened, every feeling magnified and the sheer joy of being alive bursts out of my being. Fight, flight or freeze. I’m smiling writing this as I think of other moments. My time as a bear-whisperer, hmm, I guess I’ll get to that; the first time I wake-boarded; the first time I drove a speedboat; the first time I jet-skied; the first time I jumped off the high board. So many moments.

Epilepsy, for me, is a life sentence. It will be with me always. I won’t grow out of it and it will be the bane of my life. It makes every one of my moments sweeter and every one of my depressions deeper. But it will not beat me. Sometimes it will win the battle, but there is no doubt in my mind that I will win the war. It is a life sentence, not a death sentence.

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Epilepsy and Decisions…

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

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

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

Anyway, I digress.

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

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

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

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

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

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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.

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Epilepsy and Waiting…

I hate having epilepsy. It’s been 6 months since a pretty bad episode and I’m still waiting for tests, waiting for answers, waiting, waiting, waiting!

I don’t understand why it takes so long. 6 months. It’s my brain for crying out loud! It’s not like I’ve broken my nail! Why is it seemingly so hard for the consultant to understand that while I’m just a patient, one of many, to him; I’m important! OK, so I don’t fit multiple times a day, but that doesn’t make my epilepsy any less important surely? It doesn’t to me!

I feel like I don’t matter. I feel unimportant and I feel ignored. I want my consultant take an interest in me and my epilepsy. Is that too much to ask? It would seem so. The technician that did my EEG asked me questions my consultant never has, he seemed to be genuinely interested in what went on with my fits. How I felt before, during and after. My consultant could do with taking a leaf out of technicians book! I know, consultants are busy people, and they have to see so many people, but I’m afraid I just can’t get past the fact that it’s my brain that’s broken, my brain. Maybe, if my particular consultant had a better way with people, then I would feel like a human being and not a number when I see him. Common courtesy wouldn’t kill him.

I feel anger and frustration. I feel it in my chest. My breathing seems shorter and I’ve got the familiar feeling of anxiety. The tears are pushing at the ducts and there’s a light prickling sensation in my nose. The tears. I want to be taken seriously. I want to walk out of his office and feel like he’s listened and he’s going to act. I want to feel reassured that he will find the best way forward for me and my epilepsy and that he will explain everything to me fully, present my options to me and help me make a considered decision that I feel comfortable with. I’m really not convinced that’s too much to ask.

I can’t end my epilepsy. This is life-long. I’m hard to control with drugs, so why bother taking them? I mean what’s the point? Are they really preventing me having more seizures than I currently do? I thought they probably did up until this last episode. It was bad, in terms of my fits. If the drugs don’t stop them and they have no impact on the seizure’s severity, in fact, to me, they seem to be getting worse, then why do I take them? I don’t know any more.

I don’t want to have tests done and wait, always waiting, for results that are often, apparently, “inconclusive” so they’ll need to be done again. More waiting for an appointment to come through the post then more waiting for the actual appointment, more tests, more waiting for answers, then more waiting for an appointment with a consultant who just doesn’t seem to care. It’s my BRAIN!

Anger is burning in me today. Am I feeling sorry for myself? No, I don’t think I am. I’ve put my trust in so many people over the years. I’ve put my hope in so many people over the years. I’ve gone to the appointments, I’ve asked the questions that I wanted to ask, but some questions I didn’t ask, because I didn’t know to ask them. My neurologist should be making sure that I’m made aware of all the circumstances, all the possibilities and all the facts regarding my condition. Yes, I do try to do some research, but I’m not medically trained so I rely on those who are, to help me navigate through the wiring and make sure that I fully understand which wire is plugged in where. Isn’t it? Am I wrong? Should it be my full responsibility?

I don’t want to feel angry. It’s not a good feeling. I’m struggling to channel the anger now. I try to ride it, usually. I try to placate it. I want to use the feeling in a positive way. Right now, I don’t know how. It’s overwhelming. I can’t help but think back to just a few days ago when I felt so unafraid. It’s times like this when I feel like epilepsy has beaten me. I feel worn down by it and deflated. The daily battle raging in my head feels like it’s being won by the dark side. Sometimes the depth of anger I feel towards my brain scares me a little. It’s just so ironic that it’s my brain that allows me to feel like that. My brain needs to work on its “soft skills”! I find that the hardest part to get my head around. The struggle in my brain is played out emotionally as well as physically. I sometimes feel like my brain is having a lot of fun at my (my brain’s!!) expense.

Back to waiting. Waiting for a letter. Waiting to see what someone who doesn’t care about me thinks is the answer. Waiting because it seems I have no option. I know my own nature though. I know that there are 3 options, I know which option is my preferred one. I know that my patience is hanging by a frayed thread. I know that 6 months is too long for me to wait.