The Pink Effect

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Frey

This week I begin anew, a fresh with none of the days tainted by prior events.  It is simply a blank canvas.  Some elements may carry over but they will be innovative in their content and will ultimately bring me to a place of peace and good health.  I watch as the last seven days are transported into the distance, I wish for the rollercoaster of emotions to follow as its traveling companion.

I originally thought that I rattled with my two AED’s alongside the vitamins in my system, I was proved quite wrong.  With a current plethora of antibiotics and painkillers differing in brands and levels of strength, I’m at the stage where I could probably run my own internal pharmacy.

Over the last nine weeks I have attended doctors and hospitals like it’s going out of fashion.  It’s never a good thing when you call the doctor to make an appointment and they ask, “Is that Freya?”  A sense of wanting to sink through the floor with embarrassment instantly washes over me.  Despite this, I do cling to the hope that it is due to my English accent rather than the fact I’ve been calling on a regular basis!

Aside from the other hospital visits related to the epilepsy, I have shaken up the conventional ‘pub crawl’ and added my own spin on it adapting it to a hospital crawl.  I have probably broken all records by frequenting the most hospitals in Seattle.  I’m sure you’ll admit this isn’t bad given that I’ve only been living here seven months!

It is also over the last week that I have really considered the concept of mortality.  How life is lived and the notion that we assume we are exempt from ill health.  We tend not to contemplate this until a friend or family member passes or we ourselves are diagnosed with a serious illness.  It is then that we sit back, take stock of our lives and appreciate just how fragile life is.

With this belief of invincibility, we act in such a way that it takes advantage of our bodies.  In its complexity, it both manages and rectifies the harm we impose upon it. I sadly took advantage of my body and looking back it’s amazing that it was able to cope with the damage I inflicted on it.  Being on the AED I was, I soon learned that it allowed me to drink like a fish, smoke like a chimney and get very little sleep without any repercussions other than maybe a few more absences but I figured that was a drop in the ocean.

At that point I was running away from problems I wasn’t ready to deal with.  Starving my body of food in order to punish it and binging two weeks later from pure hunger still saw it functioning in the scrupulous way it always had.  In hindsight, I am extremely lucky that my body didn’t rebel causing significant health problems.  In many instances, it is only as time goes by that the payback slowly begins to happen.  When the body isn’t as competent as it once was the consequences become visible. As we become older we are given the opportunity to acquire the wisdom and awareness to change our ways.  The respect and care we have for our bodies is exhibited through the decisions we make.  As they say, ‘Your body is a temple’; however, many continue to miss this fact pushing their body and abilities to its limits.

Having been in pain for a while now, it was last week that I had a lucky escape.  With a potentially grim prognosis it made me reflect on how I live life and the changes I would make if life altered dramatically.  After a hospital appointment, I walked down the hill in the sunshine thinking about the possibilities.  When I thought of things I should change I realized that actually I live life exactly the way that I believe it should be lived.  With my awareness, positivity, gratitude and the desire to help others, I decided that I am an overall good person.  My attitude towards my existence is something that I felt I wouldn’t need to change and I am proud of myself.  We all make mistakes and aren’t perfect so I am in no way blowing my own trumpet but we all make choices reflected in our actions for the type of people that we want to be.

With a sense of calm and peace, I learned that whatever life throws at me I shall work through a step at a time.  I will find my inner strength, grab hold of it with both hands and look for the silver lining in each situation.  Everybody possesses this strength it’s just a matter of rooting around deep down to locate it.

 

 

 

Epilepsy – The Options

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Continuing from my last blog concerning all the wonderful options that are available for those with epilepsy, I shall now go into greater depth.

It was only when I moved to Seattle, attended the support group and got involved with the Epilepsy Foundation that I discovered all the various possibilities.  It showed me how out of the loop I was with the research and the developments taking place.  On a personal level, I believe it was an indication of a lack of acceptance on my part of my condition which led me to be disinterested and subsequently ignorant of what was taking place in the medical field.  However, after a swift catch up, I’m in the know and back on track!

So where to start?  Well, medication is always the first port of call and if that isn’t successful then other options are considered as stated below.

Brain Surgery

The most important deciding factor here is whether the seizures fall into the generalized or partial category.  If they are generalized the entire brain is affected whereas partial is restricted to one area.  When it comes to surgery suitable candidates are those who have partial epilepsy.  This is because they remove the brain tissue from the affected area having confirmed there will be no damage to other parts of the brain which influence major body functions.  The other surgical procedure is to interrupt nerve pathways where the seizure impulses travel.

Suitability for surgery is a rigorous process, the pros and cons are weighed in respect of post-surgery with the speculation of improvement as well as benefits and risks. For some, this procedure is successful in eliminating all seizures but for others this doesn’t always guarantee a seizure free existence.  It may minimize their regularity offering a better quality of life or for others there may be no change.

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Vegas Nerve Stimulator

This option is used for those with partial seizures.  It is a device implanted in the upper chest issuing electrical stimulation to the vagus nerve allowing impulses to extend to the brain in a variety of areas.  In addition, there is a magnet provided which is used in one of two ways which activates or prevents the electrical impulse.

Slowly gliding the magnet over the VNS will switch it on sending an impulse to the vagus nerve.  The other technique is to hold the magnet over the VNS which turns it off and prevents an impulse from being sent.

Many people have auras prior to a seizure which allows them to swipe the magnet over the VNS to prevent the seizure from occurring; however, it can also be used during a seizure.  The technique being relatively new is known to reduce seizures but rarely offers complete control.

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Medication

Medication I covered in my previous post but an additional piece of information is that surgery becomes an option if three or more medications have been tried and have failed to provide seizure control.

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Ketogenic Diet

This is a method that I have tried and tested.  Predominantly used for children, it has also been proven to assist some adults as well.

It involves a high fat low carbohydrate diet, similar to the Atkins diet.  It is based on starving the brain minimizing carbohydrates within the body and increasing the fat levels.  The brain burns fat rather than carbohydrate which increases the number of ketones in the body.  This puts the brain into a state of ketosis which has been found to possess anti-epileptic effects.

This requires a great deal of dedication and I will be the first to say it is tricky!  It requires a great deal of commitment from the whole family both as a support as well as maintaining responsiblity of preparing meals.

This diet is started in hospital under the watchful eye of a doctor; however, in my case I was directed by my herbalist.  Unfortunately for me it was unsuccessful in respect of my absence seizures though for some it is effective.

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Lifestyle Changes & Complimentary Therapies

Doctors promote that certain lifestyle changes can decrease seizure activity.  It’s adapting ways of living in order to reduce the activities that create seizure triggers.  In my experience and I speak for many when I say this, stress plays an enormous part in their frequency.  Factors such as diet, stress minimization, an appropriate amount of sleep, emotional states and reducing alcohol all have a positive impact and with additional activities such as yoga, meditation, maintaining fitness and even making sure you get fresh air all can make a difference.

The journey of finding wellness with this condition or any other condition is all about research and experimentation.  Epilepsy isn’t generic therefore the condition affects everyone differently so what works for you may not work for someone else and vice versa. This makes the situation a voyage of exploration!

Diagnosis – The Realities

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Finding myself a little behind in my blog ‘kick off’ time (most appropriate with the World Cup having finished yesterday!), ironically the delay has provided me with today’s subject matter.

Since my diagnosis of epilepsy at the age of three I have known nothing else.  Life progressed with changes in my condition being dealt with and moving forward.  Decisions had to be made taking into account what the doctors advised was in my best interest along with consideration for my parent’s choice of what they felt was best knowing me as a whole.  In hindsight, my mum did a flawless job in her decision making, plus all the love and support she and the rest of my family provided me with.

As I got older, I thought about my ability to drive in the future.  I counted down the years getting excited at the prospect of learning how to drive, getting a car and gaining more independence.  I’m sure sub-consciously I had acknowledged it but I never really thought that driving would be something I couldn’t do.  I remained positive and continued to count down the years.  Seventeen came and went and it was only in my early twenties did I realize driving would probably not be an option for me.  I have always made my way on public transport and England has a great transport system, (as much as I would grumble about delayed trains, buses etc.!) as has the US and Canada.  Good transportation has dictated where I live; with the need to be independent, towns and cities are ideal for me.  As much as I love nature, (and I truly do) I am a city girl at heart.  I thrive on the people, the focus, getting from A to B, the ability to remain anonymous and even, dare I say it, the insular attitudes on the bus or train which many find a negative.  Depending on my destination, particularly if I’m off to work, I like the opportunity to be with my own thoughts in preparation for the day ahead.

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I count myself as one of the lucky ones.  ‘Why?’ you may ask, well with a diagnosis at three I have known nothing else.  Living life with epilepsy has me prepared for the unexpected, ready to to catch whatever life throws at me throwing it right back and giving it a run for its money.  However, if you have a ‘normal’ childhood and continue in the same vein into your teenage years without restrictions if your first seizure happens out of the blue in your teens or later life is partially or fully established.  Therefore, the diagnosis at that stage I think is harder to deal with.

A diagnosis of epilepsy will be overwhelming, a shock and likely to turn your life upside down.  It will be a challenge to get your head around, let alone conquering acceptance.  Life will require a review and adjustment potentially bringing your independence into question.  Driving, if able, is the one factor I am told that can be one of the most difficult life changes, particularly if it is work reliant.

If one seizure occurs, a diagnosis of epilepsy will not be given immediately.  It is only after two maybe three seizures that a diagnosis is issued; however, many go years before reaching that point.  Having your first seizure is frightening; the necessity to face more can generate a great deal of fear not only for the person experiencing the seizure but also for those who are responsible for their safety and care.

Seizure type will dictate the life modifications that will need to be made.  This can include living arrangements, employment and driving; studying, pregnancy, drinking and socializing amongst others.

However, adapting to epilepsy does not always have to be as challenging as it may seem.  Life can still be lived to the full and I am living proof.  In this day and age the research that has been undertaken offers so many options for seizure control dependent on seizure type.  There are twenty five different AED’s which have been approved by the FDA (Food & Drug Administration) and it’s the first method tried for control.

If one AED is unsuccessful, there are others to try alongside combinations which can be extremely effective.  If you are ‘refractory to treatment’, the term given to somebody who does not respond to medication, there are other options.  I will cover this in greater detail in my next post but they include the Vagus Nerve Stimulator, Ketogenic diet or brain surgery, if you are an appropriate candidate.

Having touched on the diagnosis of epilepsy with brief coverage of some of the considerations that accompany it, I have included a number of useful links below for further information.

https://www.youtube.com/watch?v=pZHKfXAWVvI

http://www.epilepsysociety.org.uk/just-diagnosed#.U8RuyPnMSAg

https://www.epilepsy.org.uk/info/employment/transport

https://www.aesnet.org/clinical_resources/practice_tools/employment_resources

http://www.nhtsa.gov/people/injury/olddrive/Seizures%20Web/

https://www.epilepsy.org.uk/info/law

 

 

Camouflage, One Of The Great Superpowers

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Mother Nature, such a treasured entity and highly underrated.  She surrounds us in so many ways but goes unnoticed as we become caught up in the everyday trivialities.  My eyes were opened when her creations of inexpressible beauty were bestowed upon me on the stunning island of Kauai.  From the majestic craggy canyon dotted with plunging waterfalls to the petite little lizards darting in and out of the foliage containing intricacies that overwhelm the human mind if you choose to really open your eyes and see past the immediacies of life.

It was during this time that I realized just how small and insignificant we humans are in comparison to the big wide world.  The elements and the beings that evolved for hundreds of years before we existed continue to maintain the legacy of their species with a silent strength.

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As I sat on my lounger basking in the warmth of the sunshine and reading, every so often I lowered my book to watch the palm trees swaying from side to side and admiring Mother Nature’s splendid work which quite frankly, isn’t too shabby!  On peeking over the top of my book I had the unexpected delight of seeing a little lizard wandering around in the hot sun.  Unaware of my presence and watchful eyes, he proceeded to go about his business.  His coloring was various stripy shades of brown.  It supplied him with a camouflage effective enough to exclude him from the prying eyes of birds should they mistake him for a tasty snack.  Perfectly motionless whilst he checked his surroundings, he intermittently cocked his head to the side extending his dewlap.  He had one back leg lifted in a ‘yoga-esque’ position which was held with such stillness that I was put to shame when I was reminded of  the stamina (or lack of) that I had when attending my yoga classes!

It was his camouflage that got me thinking.  How useful a tool to possess to use in everyday life?  From the perspective of living with a condition such as epilepsy, at times it could be a real saving grace.  With the experiences I have had over the last thirty years, the absence seizures have understandably presented occasions when there has been a need to explain my situation primarily for safety reasons.  Many didn’t know about epilepsy so there was a need to convey the details and educate which is the basis of raising awareness. The knowledge provided could potentially be used in the future if necessary; however, this process is a little exhausting for me!

I liken it to an actor attending an audition.  I have a monologue that I have rehearsed which includes all the related aspects for the role.  In order to fit with the character, for each audition I will need to tweak the monologue so it relates to the different elements required by the director. Additionally, I will need to be prepared to answer any questions.

Questions are an important component in the education of epilepsy and I am always so pleased that people have an interest and that they want to ask questions.  If anything, I find they don’t want to ask because of a concern of causing offence!  I am very open about my condition; however, it does create a certain amount of vulnerability to be in such a position.  As I open up and communicate the necessary information, which at times is of an extremely personal nature, to a degree there’s a feeling similar to that of being naked (yes, strange I know!). It’s almost like everyone can see your body in all its glory which can bring a sense of embarrassment and self-consciousness.  It’s on these occasions when providing the details and actually having the absence seizures that the camouflage would be desirable.  Being able to go unnoticed to avoid explanations or the concern that people will assume you’re being rude or unintelligent if unable to keep up would, at times, be a blessing.

Purely by chance, I stumbled across a wonderful quote associated with the subject of camouflage which sums up how often some people with epilepsy can feel.

“I quickly, swiftly, reach in, pluck out, and peer into the mirror.  ‘I am still here.’ I am in the glass, in this moment. After this moment, I may not be here; I may be a person who does not know where she is, or why. I leave the kitchen table to bathe, and to dress for church. If only my closet held on its shelves an array of faces I could wear rather than dresses, I would know which face to put on today. As for the dresses, I haven’t a clue.”                                                                                                                        – Tim Cummings ORPHAN stories

 

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Painting by Masood Kohari

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“I quickly, swiftly, reach in, pluck out, and peer into the mirror. ‘I am still here.’ I am in the glass, in this moment. After this moment, I may not be here; I may be a person who does not know where she is, or why. I leave the kitchen table to bathe, and to dress for church. If only my closet held on its shelves an array of faces I could wear rather than dresses, I would know which face to put on today. As for the dresses, I haven’t a clue.” – Tim Cummings ORPHAN stories

Once Upon A Dream…

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Danny Glover

What creates a dream?  When I say dreams I’m not referring to aspirations, I’m referring to experiencing what are often bizarre circumstances with pieces of your conscious world thrown in for good measure.  It lets you know that you’re in this enigmatic situation till the bitter end. It means attempting to combat a lion chasing you despite having lost the ability to run and/or scream, it means finding yourself in a town stark naked only to discover your dignity slipping down the same mysterious road your clothes did a number of moments (which felt like hours!) ago.  Positively in this delightful scenario people haven’t realized there is a stranger stood utterly nude outside the local Starbucks. However, should you happen to move or focus on your lack of apparel, they’ll notice and the mortification (and cold) will set in.   I ask this question because a couple of nights ago I woke up leaving a dream that not only felt vastly real but was also highly entertaining!

Early morning in my sleeping state I found myself at a summer camp having to perform a gymnastics routine.  The gym where it was taking place was entirely colored blue.  On starting I helpfully managed to forget a number of moves, upon realizing it saw me having to fly by the seat of my pants and make the whole thing up. This wasn’t a success because on coming up with the genius idea of doing a forward roll to ‘fill in’ the time, I couldn’t perform it for love nor money.  I tried six or seven times but I just couldn’t get my head on the floor to get in the position and roll.  However, when it came to the ropes I climbed with a monkey like agility when in reality I can’t climb a rope for taffy.  After a tremendous cheer, I continued on to attempt the forward roll which clearly had been presented in my dream the wrong way round (helpful!).  Post energetic activity, I trotted off to root around for a specific item of clothing.  I looked through a jumbled mess comprising of every piece of clothing imaginable.  Unsurprisingly, I never found what I was looking for.

Late for my next engagement due to the disaster which was the gymnastics event, I walked in to a dance studio where my mum was having ballroom dancing lessons only to find her dance teacher was Danny Glover (naturally).  My sister was there along with a number of others.  What made this rehearsal even more wacky was the fact that all who were watching were sitting on the floor like ballet dancers wearing wedding dresses.

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I remember having a veil and a big poufy skirt the sides of which I was holding as I ran in.  It was actually a spectacular sight to behold.

Moving swiftly on, I found myself in a setting that couldn’t have been more of a contrast.  I was walking up a windy Hawaiian road only to find an open windowed train making its way towards me. Unsurprisingly there were no tracks so it simply floated down the hill.  Jumping into the bushes to avoid getting flattened I looked up and lo and behold my folks from the Camphill community were in there waving to me as they sailed by.  Not wanting to get stuck in the bushes again I crossed to the other side and ventured to the lookout point to admire the magnificent view.  Whilst looking, I heard a noise.  Turning round I saw a three legged fawn making its way up the hill.  Before I knew it I looked to my right and yes, you guessed it, there was an elephant walking down the hill.  He seemed sad and subdued swishing his trunk every now and again,  moving his feet and shifting his weight from side to side.  Drivers began honking their horns but it was like the elephant was alone and blissfully unaware of the blockage he was causing.  The traffic, which came out of nowhere was backing up and I was searching for a cell phone to call animal protection.  Every time I tried to dial the number it kept disappearing requiring me to repeatedly try again (see, even my phone frustrations transfer to my dreams!).  I never got to make the call and can’t tell you what happened next as I woke up.

I love the idea of dream interpretation, how precise this is is another issue entirely.  I do believe that concerns, worries and conscious events contribute to dream construction.  I’ve always had extremely vivid dreams and have wondered whether it could be attributed to the AED’s.

The cause for dreams is a concept scientists have yet to crack but in the meantime trying to understand this dream, well, go figure!

 

A Beautiful Mess

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Freya

Hello my fellow Finding Freedom followers!

I have returned from my ‘tropical rehab’ and there are no words to describe just how beautiful the island of Kauai is.  Without entirely detaching myself from the techno world I was accompanied by my phone.  Ideally I would have preferred to be completely cut off from the real world but it materialized that it was actually useful.

During the week my brain has overflowed with thoughts and ideas.  The content is scrambled in my head and I seek to find the thread to begin slowly undoing the chaos!

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Despite taking a pad and pen with me that I now know to be old school (!); I have discovered yet another extremely handy application on my phone.  I can’t help but feel a mild annoyance at how useful these things can be!  It would seem I am being whipped along with the current that is the present to future.    I found with all these notions arriving at the speed of light, my hands simply couldn’t keep up with their rapid appearance.  As I sat on a lounger by the pool under the flawless blue sky with nothing but the slender palm trees blowing gently in the breeze, the invaluable ‘colornote’ application saw me writing furiously snippets of potential blogs, thoughts and feelings deriving from the depth of my being.

Encouraged to enter the 21st Century by my beau, he lent me a kindle.  It has predominantly resided on my bedside cabinet accumulating dust.  I love turning the pages of a book, its smell and the ability to refer to previous pages if need be.  Ready as I was with my three books (yeah right as if I was going to read three books, I’m the slowest reader going!), he turned to me and asked me if it was not easier to take the kindle and save room in my luggage.  As much as I wanted to dance up and down and say it makes more sense to take books I knew I couldn’t because he was right.  He informed me that there were many free books to download onto the kindle.  As I probed into what is the size of an ocean and named Amazon, I trawled the many pages looking for inspiring books that were actually substantial in content.  There was book after book of cheesy romance which doesn’t appeal to me at all.  I want something to get my teeth into, to make me think, evaluate and stimulate my brain but it became a case of; next – next – next – next! That was until I came across, ‘Trees Tall As Mountains’ by Rachel Devenish Ford.  This book jumped off the page short of slapping me in the face!  She is a woman who at that time had blogged for eight years and has since written a number of books. She seemed interesting, I thought it should be a good read and hey, maybe I’d learn a thing or two!

I could not put it down.  Any opportunity to read I would  learning more of how she had chosen to live and making me aware of what is important in mine.  I considered what constitutes a fulfilling life and what is achievable.  She proclaimed not to be anything other than who she is and writes with an invigorating honesty.  It reminded me of how dangerous it is to look at another’s life and see what appears to be wonderful, for when you delve into the dustiest corners you will find this is rarely the case and encourages dissatisfaction with one’s own life.

I was totally taken with the simplicity of this woman’s existence.  To read of the pleasure she receives from her children and life despite her battle with depression and anxiety; the unbreakable bond she has with her soul mate; the solidity of her family unit and living in community with all the responsibility which it brings yet finding time to write.

I began to feel the prickles of reflection emerging.  Reflecting upon the life I have led, where it has taken me, how I have loved all aspects of my existence, what it has offered in its entirety and being supplemented with appreciation or in some cases not.  Hindsight provides an opportunity for thankfulness but makes no judgment if it is by-passed at the time.  It’s about the wisdom of realizing what that situation is presenting you with irrespective of whether it’s postponed or achieved in the moment.

This gave me a sense of renewed security in writing in the style that I do.  It’s safe to reveal experiences, feelings and thoughts which are felt on a daily basis.  These experiences joyful and otherwise are not transcribed onto my forehead but if people wish, they are out there with a choice to be read .