‘Share Similarities, Celebrate Differences’ – M. Scott Peck

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Some say depression goes hand in hand with epilepsy.  Frustratingly, I have always found that it is impossible to differentiate between the effects of epilepsy, the effects of the anti-epileptic drugs or whether under those two black clouds it is simply a characteristic of me.

There is plenty of research and literature backing up the possible causes for depression but as always, each and every one of us is different; therefore, we’ll never quite know the truth. Here’s a basic out-line which Epilepsy Action have put together.

https://www.epilepsy.org.uk/info/depression#epilepsy

Trying Keppra was the one and only time that I knew those feelings didn’t belong to me.  The side effects of this particular AED were feelings of suicide.  I slowly fell into a black hole. I remember my mum coming into my room as I was slumped on the floor against my bed.  She told me enough was enough and I needed to come off the drug.  I had been taken over by a force stronger than me so I listened and did what she said in my haze.

During the time of having regular seizures, at that young age I wasn’t able to understand how I could deal with it in a positive manner. Being able to use your mind as a tool to improve my quality of life at the age of ten or eleven is near impossible as you don’t have that capacity.  That comes with wisdom, experience and learning from the mistakes you make.  If only you could go back knowing what you know now!

I decided this week to reflect on my life and list three situations which include fear, the difference between me and others and the interference epilepsy has had.

  1. Every day I’d clock watch when I got home from school with an increasing fear as it got closer to bedtime.  Every night I’d lie down wishing that I could stay in my own bed for the entire night rather than having to do the ‘bed swap’ that was necessary.  Perhaps one of the greatest difficulties was never getting past the loneliness and isolation I felt.  That nobody was able to hop into my body and feel it getting twisted and beaten then left to dry like a wet dishrag like I did.
  2. Due to various nutritional plans I was on to improve my seizures and allergies, children’s birthday parties were always significant. I’d have a great time with friends and playing party games but when it came to food there were fairy cakes, crisps, sandwiches, sausages, cheese and pineapple on sticks and birthday cake, but I never ate any.  I brought my own food which made me unlike the others.
  3. Memory loss. Working at a law firm although I was admin, it still had its stresses. With a cheque having been submitted by a client, it was not be found.  The amount was a couple of thousand pounds and was eventually located.  I had taken it and had absolutely no recollection of doing so.

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Turning these situations into positives.

  1. It was the norm. I didn’t like it but I accepted it because that’s how life was.  I had an amazingly supportive family who kept life as normal as possible enabling me to do things other kids did, just sometimes with a compromise.  To ease the fear I kept the light on and listened to music as a distraction as I went to sleep.  I also began visualization which calmed and relaxed me.
  2. It was actually quite fun having my own lunch. Probably the only item I can remember was sausage rolls.  My eyes always lit up with glee because every time without fail all the things I loved were in that lunchbox.  It had been made with thought and love.  My mum always made a point of, if things had to be done differently then she’d go all out and make them the best of different which I loved and appreciated.
  3. So that was a mortifying experience for me!  It happened but you just have to let these things go.  Communication is the key with epilepsy and my employer was fully aware of my condition but had no issues.  I had a boss who understood. I would often ask if there was a problem with my work or if I should be doing something different.  He always told me during those conversations that I didn’t need to worry because he knew I was doing a great job.  Even though he knew about mistakes he would tell me that people without epilepsy make mistakes and some worse than mine which made me feel better!

So it just goes to show, depending on how you handle a situation and your perception of it; sometimes it can alter the outcome.

A Love Story… Technology & Me

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Technology. The days of knowing how to deal with electrical problems, (more like mashing the buttons and putting unknown leads in unknown places whilst hoping for the best) have long passed me by.  It leaves me looking on enviously at the kids (and adults) with their new-fangled gadgets which I wouldn’t even know where to begin using.

Regarding computer issues, the conversations are always accompanied by a significant amount of mirth from others and it’s normally from the beau as he has a degree in computer science.  This makes my ineptitude magnified a hundred fold.  However, on the up side, there is always somebody in my household who I can plea with to help me.  Normally my pleas are somewhat like, “Can you help me pleeeease?  I’ll make you a coffee or put a beer in the freezer if you do!”  This is alongside a big toothy yet hopeful smile.

I am always ‘encouraged’ to figure electrical or more specific computing, out for myself.  I agree that is a sensible option – on occasions.  My train of thought is, ‘Yes I could do that; however, let’s be honest, I am extremely unlikely to resolve a complicated issue by myself therefore surely it makes sense to save time and tell me outright?

Gone are the days of Acorn computers, cassette tapes, records and videos.  I remember when I first started high school, (which looking back makes me feel dreadfully old because that was twenty two years ago), Year 7 saw computer skills classes introduced.  Everyone was in awe of the electric typewriters.  My goodness, we were so ahead of our time! It made life so much easier than the original typewriters.  But then, then came the Acorn computers.  Good Lord now we were flying into the 21st century!

Looking back, now they were ridiculously old school.  Now there are tablets, iPad Air 2, iPhone 6 Plus, iPod touch, mini and shuffle, iPad mini 3, iPad Air, iPhone 5s and iPhone 5c and lest we forget the original iPhone – the mind boggles.  That’s just the Apple products…

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I remember when I’d take this class I always had a headache.  With the concept being so new and a screen so close to my eyes it would appear the epilepsy and computers didn’t mix particularly well.  Needless to say, I ended up skipping that class.  Perhaps it has contributed to my electrical illiteracy.

Generally, I don’t care much for computers which is extremely ironic seeing as I’m a writer!!  However, it’s all about obtaining a balance for these activities.

One of my happiest times was living in an apartment where they hadn’t installed broadband which allowed television access.  I was as happy as Larry as it encouraged me to find different interests.  If I wanted to watch anything I had my laptop and a few DVD’s.  In Camphill we watched a lot less television.  We’d pop to the movies now and again and the villagers got to watch a video each Sunday.  Don’t get me wrong, I like watching some television.  Even more so if it’s a gripping television series that returns each week for the next instalment which I’ve been dying to see.  But I would also be content if it was minimal or obsolete, in my life at least.

Bottom line?  I feel it has become a metal box which controls a lot of lives.  It is relied on too much for enjoyment.  If it wasn’t in houses for one reason or another for many it would create an enormous amount of distress.  There would be a plethora of people who wouldn’t have any idea what to do with themselves let alone receive enjoyment from much else.  That’s why I feel blessed to have the best of both worlds with the ability to differentiate between the two.

A prime example of my technological crisis’ is that I recently received a new computer.  It’s wonderful but I faced the daunting task of transferring work, files, music, pictures etc. over to my new one.  Deary me.  I had absolutely no idea where to start.  I wanted to install Office on there and not only did I keep my product key,  I brought it with me too!  Anyhow, I thought it would be easy to download it and put in the product key but no, it had absolutely no intent of allowing the software instalment.  It may as well have had a sign on the screen saying ‘Just Don’t Bother’.

After giving one of my special toothy smiles, the beau came and fiddled with it and it worked like a dream – of course it did.  I must add to that what he did was what I had attempted but computers just love him so I’ve decided to name him ‘The Computer Whisperer’.

 

Where Does The Line Between Humor & Disrespect Lie?

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Race, sex, culture, religion, those with disabilities and those without, where do we draw the line at using these issues for comedy entertainment without thinking of the people who are linked to them?

Being a part of many different forums some of which regard epilepsy, I noticed one particular comment from someone who was very upset.  They had watched a television show where the characters had used seizures as the butt of a joke.  I looked at the comments that followed from many people.  It was interesting to see how varied the reactions were.  Some were scathing, projecting their wall of defence.  Others were more relaxed with their views, expressing that they can’t alter their situations so they opt for laughing as it’s better than the alternative.

I believe that it is important to be able to laugh at yourself.  Laughter can so often lighten a serious situation.  Research shows that laughter releases endorphins which are the brain’s ‘feel good’ chemical (www.scientificamerican.com/article/why-laughter-may-be-the-best-pain-medicine/).  But it’s not just the endorphins that are advantageous there are also a number of both short term and long term benefits. The link below goes into greater detail of how it can improve your health.

www.laughtertherapy.org.uk/benefits-from-laughter-therapy/

One of the popular jokes repeatedly used is the link between tonic clonic (grand mal) seizures and dancing.  The referral is both positive and negative.

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Whilst I feel that humor should be included alongside a condition, I thought honestly about how I feel. When I see something related to epilepsy I sometimes can’t help but cringe a little inside.  This feeling makes it completely contradictory to my beliefs that it is okay to laugh about it as the positive pro entertainment comments I agree with.  Nothing can be changed about my condition therefore it makes sense to go with the flow and laugh about it.  It makes sense, right?  So why do I still have conflicting sentiments about this?

I wonder if perhaps it’s like someone reaching inside to the sensitive place that epilepsy lives that many haven’t or can’t deal with.  Perhaps it makes us feel exposed.  Maybe it really is the fact that someone is creating laughter at our expense, a general situation that very few people are comfortable in.  Possibly, it evokes feelings of anger in some because although it is a subject matter used as a source of humor, the writers/comedians etc. don’t know what it’s like to experience seizures and all the effects that it has upon our lives.  If they themselves had been faced with those circumstances would those jokes be as funny so much that they would still want to use them?  All of this is speculation.

Part of the problem is that this issue has been combined with use in a negative purpose at people.  The name calling starts to occur and families shun their own flesh and blood because of it.  It contributes towards the understandable emotional reactions that people have.  By using certain terminology for unsavory purposes it develops negative connotations. Due to incorrect usage, this has induced a natural sensitivity for anything remotely concerning this subject.

A point of confusion stemming from the last topic is political correctness.  Everybody prefers different terminology and this where I, along with many other people, get terribly confused!  I attended a political correctness workshop a number of years ago which went through various themes and the language which was currently used.  Surprisingly, the speaker covered epilepsy.

I’ve always referred to myself as an epileptic.  I have epilepsy therefore I am an epileptic.  To me it’s a natural assumption.  However, he stated that we were now not to use that term as it was offensive to those with epilepsy.  We were now to say ‘person with epilepsy’.  I’m not going to lie, it really got my goat!  Who was this man to tell me what I should and what I shouldn’t be called?  I couldn’t remain silent (unsurprisingly!) so I stood up and asked why this change had been brought about. I explained that I had epilepsy and I refer to myself as an epileptic because that is what I am.  There were no two ways about it. He responded with very little.  I had challenged him with a question for which he had no answer.

Many now refer to epilepsy simply as ‘E’. I am of the understanding that many can’t bring themselves to say the word.  That shows the sense of shame they have which has sadly been caused by verbal abuse and hurtful and upsetting actions by others.  This is why when returning to the varying responses in the forum including mine; they were disparate because their experiences have been so different.

Fall Food Deliciousness

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Last week’s crafty blog really got me thinking.

Fall makes me feel crafty but it also makes me think about food.  Particularly soups.  There’s nothing quite like warm soup and a crusty roll when you’re inside and you see the leaves dancing in the air on a blustery day.  You’ve got your woollies on, slippers and a homemade soup heating up.

Cooking is a very therapeutic activity.  The love which goes into making a dish is absorbed by the food resulting in greater enjoyment.

I’ve only managed one soup so far but I’m into the groove and there will be plenty of vegetabley goodness to come.   I like chucking all the veggies, a lot of which are coming to the end of their life, in, alongside stock, salt and pepper and whatever herbs, spices etc.  I cook them down and throw them into the blender.  Boom, there’s lunch for the week!

It was only recently that after a dietary discussion I realized that perhaps I wasn’t eating as many vegetables as I should be.  I’m healthy, I do a lot of cooking, I include sugar in my diet and occasionally the naughty stuff – a Sprite every now and then or a sneaky cake but try not to overdo it.  However, it was brought to my attention that a few olives, salad and very little hot veg every now and again really wasn’t cutting it.  Every day I needed to be eating more veggies than I was.

So, feeling a little disheartened yet thinking it was an issue easy to resolve, it seemed that soup was a perfect place to start.  I’ve been putting pretty much whatever I want in.  There’s rice, pasta, pearl barley, meats and even fish should that float your boat, you can make it what you want.  It’s those pesky carbs though. They’ve been creeping in despite trying to maintain a low carb diet – that’s true willpower for you, or not!  I’ve been trying to replace rice or pasta with potatoes and veg.  Since making the changes I began to appreciate just how few veggies I did eat.  However, things are looking up.  I started off small and increased those changes and now I’m getting to the place I want to be. Awareness is the key as well as motivation and self-control.  Yes, the latter continues to be something I’m working on, no reminder required!

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With regards the epilepsy and food, with my daily intake of chemicals, I need to be as good to my body as I can possibly be.  I need to give it as many nutrients as I can to replenish the various vitamins that the anti-convulsants deplete. As an aside, any drug takes a toll on your body, slowly wearing down the immune system thus making you prone to minor illnesses.  By instigating healthy eating, I’m providing more support for the extra work my body has to undertake on a daily basis. Whether it’s a good constitution, genetics or the type of food I choose to eat (the latter which without a doubt has had a positive impact), I should give my body a pat on the back for functioning so well, it does a cracking job.

Additionally, having had a diagnosis of endometriosis earlier in the year, I was seeking out alternative options including dietary possibilities to improve the symptoms.  I was given the orthodox advice to begin taking hormones. Quite honestly, the thought of that made me feel like it would be the very last option to turn to as I wanted to explore other avenues first.  The major reason for this preference is that I am constantly aware of my taking more medication in addition to the epilepsy meds. My body will be under a much greater strain and in particular having consumed narcotics and painkillers for the best part of three months.  Then there was the surgery followed by recovery, it was just a thought that I didn’t and don’t relish.

The link below is a personal website that I initially found to cover nutritional and general information just in case there should be any ladies reading who suffer with this condition too.  However, it is advisable to go to a naturopath before putting any of these suggestions into practice and I am searching for just that in Seattle before making any crazy life changes.  Everybody’s requirements and bodies respond differently to different treatments so it’s important to take that into consideration.

http://www.endo-resolved.com/

I have very little left to write except that in a few moments I will be striding towards my fridge to have a good rummage in it. I shall be deciding which vegetables can go in my soup today, and I might just push the boat out and throw some rice in for good measure!

Get Crafty & Discover Your Niche

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This week I have rediscovered creativity.

When in England, I caught up with many people who inspire me in all manner of ways.  Those sparks accompanied me on my journey home, igniting many ideas that have snowballed into my future.

Being a pretty artsy person anyway, I’ve continued trying a variety of arts and crafts gaining new skills whilst deriving much pleasure from them.  There’s nothing quite like creating ‘something’ with your hands made by you that can be displayed or given as gifts.  It doesn’t have to be ‘super fancy’, but an item which, from start to finish has sustained pleasure and motivation.

I have always been able to see the finished product in my mind’s eye no matter what it may be.  Somehow, because of that I am often able to figure out the process to complete it without instructions, a pattern etc.  For some, this method may naturally be for math or science, but in my case, it has always been creativity.

I loved how I could get lost in my hobby.  The concentration prevailed so that I would often find I had a sense that time didn’t exist.  My creativity was my saving grace.  Although I did okay on the academic side at school, I underestimated the effect of the epilepsy and medication on my brain.  I have always had trouble retaining information and therefore it has made learning and studying that bit more difficult.  It wasn’t till later that I understood why schooling had been challenging. The worry and anxiety manifested itself as stress and then I was on a slippery slope with no going back!

I discovered it was the arts that I excelled at: music, art, dance, acting, sewing, home economics.  I believe if you adore a subject you will exceed perhaps with higher grades (if at school) because there is a profound interest and a want to learn.  I also found it a fantastic way to channel frustration and other emotions that I needed to expel.

The Catholic high school I attended I didn’t like aside from the friendship problems that seemed endless.  When attending external dance classes a good friend of mine introduced me to the high school she was attending.  The BRIT Performing Arts & Technology School.  Having applied and been interviewed (twice I think) to major in dance, I was accepted.

I cannot put into words the elation I felt on finding out that I had been accepted.  Upon starting, I was overjoyed to see how individual many of the students were.  There seemed to be no judgement, you could be your true self and it didn’t matter.  I flourished.  Of course as a teen I had the usual growing pains but they were by far some of the best years of my life.  Weekends sucked and I couldn’t wait till Monday came around where there would be another five days to enjoy!  It’s probably worth letting you know that two days a week the school day was 9-6, another two were 9-5 and Friday was 1pm.

My creativity bloomed.  I found all these new areas to invest my time in which were on the curriculum and I was required to think outside my creative box. I pushed my brain to its limits which is exactly what I wanted.  The teachers were like none that I had experienced before.  Whilst maintaining appropriate ‘teacher/student relationships’ they were very personable and there was unquestionable mutual respect.  In hindsight, I realize the environment was such because the students had chosen to be there.  This of course had a knock on effect for the staff as their job became easier.  Once again, it wasn’t always an easy ride and things weren’t perfect, but then nothing is.

Lucky for me, I have had the opportunity to learn many crafts.  Stained glass is one of my favourites with numerous variations of it; sewing, weaving and knitting (I loved my precious sewing machine which I sadly had to sell); sculpture and pottery; drawing, charcoal and painting; individual crafts such as tie-dye, screen printing, candle making, beading (jewellery), cards, alongside many others.

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I am currently immersed in a sea of craft books, quite frankly, nothing makes me happier.  When watching television, eating, drinking, waiting for the bus, I forever have one eye on a book, flicking through the pages to view the possibilities.  It’s been a little while since I have been fully active in the crafting world BUT, it is time!  Autumn brings out these feelings particularly with the weather getting cooler, but, with Christmas on its way the inspiration is palpable.

Sadly, with my medication change the tremors have prevented me from knitting as purling is especially difficult. However, my metaphorical spring of the creative world will eventually present its beautiful self bringing with it a loss of time.

Fundraising With Cake? Yes Please!

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Hello dear followers,

As you know, for the last eight months I have been dedicating my time to being an epilepsy advocate.  I have created ‘Finding Freedom with Epilepsy’ from which this blog was born.  I began various social media sites and have been assisting on a campaign with the Cameroon Epilepsy Foundation aiming to improve conditions in the villages there.  No doubt this will be familiar as I document a lot of my advocacy and additional work here on my blog.

Did you know epilepsy is the source of more deaths than breast cancer?

http://epilepsy.about.com/od/Epilepsy-Basics/fl/Epilepsy-Statistics.htm

And that there are approximately 65 million people worldwide who suffer with epilepsy?

http://www.cureepilepsy.org/aboutepilepsy/facts.asp

So, with November being epilepsy month I decided to undertake a related photographic project.  This is in order to help raise awareness for the condition as it is so desperately needed.

As I traveled abroad for most of October, I decided to take photos of everyday objects and scenes that have purple featured in them both obviously and otherwise.  I incorporated both because not everything in life is easily recognizable.   Now, I am no professional but I chose to use a camera phone to do this, after all, isn’t that what the kids are doing these day?! But joking aside the reason I chose this option was because it is nothing out of the ordinary.  It is how life is lived, you want to take a picture you whip out your cell phone and take it.  Not everyone has the luxury of a professional digital camera.

My message behind this project is to demonstrate to people that the pictures are images that we see every day; however, most go unnoticed because they are just ‘there’.  They are not immediately obvious and with some of the images it is similar to ‘Where’s Wally’, except with the color purple!  I know as I undertook the photography, I never realized just how many purple objects there were in cities, villages, buildings, restaurants, gardens etc. That is the same with epilepsy.  It goes unnoticed by many, other than those who have it.  There aren’t neon signs above our heads which point downwards saying ‘epileptic’ and the only time someone tends to notice is if we had a grand mal seizure.

Excitingly, I have just managed to secure an allocated space in a local Seattle art gallery who will exhibit my work in December.

Having epilepsy myself, I am keen to do all I can to fundraise for this cause. This blog post is me reaching out to you to ask if you would be willing and able to donate, no matter how large or small.  I appreciate it’s not always easy because money isn’t always in abundance but if you can, it would be gratefully received.  By achieving my goal it means we are one step closer to raising awareness and the funds raised go towards the research which will one day find a cure.  This in turn will improve the lives of those 65,000,000 with epilepsy.

Thank you so much for those who have already donated, we’re forever getting closer to the goal.

Happy Friday!

Follow This Link to visit my personal web page and help me in my efforts to support Epilepsy Foundation Northwest

If this link does not work, please copy and paste the following into your browser:

http://www.seattleconference.org/faf/r.asp?t=4&i=1118886&u=1118886-414272186&e=7987981517

 

 

Through Chaos Comes Clarity

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Have you ever had that feeling of knowing what you have but not knowing quite what to do with it?  Like you’re going round in circles or walking blindly through a fluffy cloud but not quite sure what’s next?  I can practically guarantee that everyone has been in this situation at least once in their life and now it’s my turn.

I’ve always been a multi-tasker, a ‘jack of all trades but master of none’ and to be honest that’s just how I like it.  I’ve had the opportunity to do so many things in my life; from traveling to working abroad, experiencing different cultures and their people but most importantly having a diverse content of life.

I have never been one of those people who went to university followed with a possible gap year and on to a job which becomes a life-long career.  In some ways I admire those people very much.  They have a strong education behind them and know exactly what they want to do.  That’s not me.  It wasn’t ever me.  It doesn’t mean that because I haven’t opted for that route that my life hasn’t been as rich or as meaningful as those that have.  In fact on reflection, I did go to university; it was the University of Life.  I will continue to attend this university each year until my dying day and relish the thought of being able to study with a passion.  However, each person has dreams and goals and they will all be individual because we are all so individual.

I am proud of the richness in my life, the opportunities and events that have arisen carrying me gently along the way or in some cases, shoved!  But one thing that tends to happen every now and again is that I get into a funk.  A funky cloud of funkiness which has me unsure of what I should do with all that’s at my fingertips.  The time has come to brainstorm or for those that prefer, a spider chart.

Issues of confusion always look different written on paper than how they appear in our head.  At this stage I’ll be attempting to figure it out as it wizzes round inside my head.  I am a very thoughtful person and I wear my heart on my sleeve; therefore, it is always very obvious when I am lost in thought.  So, when living with someone as I do, you both get to know what makes your prospective other tick.   As I go about my business my beau will always ask what’s up.  My answer is normally, ‘Oh I’m just thinking’.  Now those four words simple as they may seem create a slight rolling of the eyes and a, ‘Oh no you’re thinking again?  You think too much’ look.  It is then that he more often than not retreats into his man cave, probably more for safety than anything else. Unpredictability does make this a safe option!

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If I can’t untangle the confusion on my own then it’s off to seek out some lucky fellow who I deem suitable for the job.  It’s always helpful to chat with someone else as they will see it from a different angle.  Seeing it through someone else’s eyes can be the next step toward the resolve. But, unfortunately, that’s not always the case.  So, armed with the advice of the chosen friend, confidant or family member, it is choice as to whether to run with the advice or not.  I have to say, it is rare that I will need to go that step further.  Normally, I take it away and ponder on it deciding whether I can use it or not.  In some circumstances it will be the springboard to reaching the clarity I am looking for.  The only other situation which I have to say does happen more often than not is that upon thinking and trying to figure it all out, I subconsciously put it ‘out there’ wherever that may be.  However, this is never a bad thing because so often my answer is presented to me and I find the predicament fixed and I am fixed.

These situations so often bring frustration, helplessness, annoyance and a lack of patience!  I am so used to these occurrences it simply becomes, ‘Ahhh okay so what’s it going to be this time and how long do I have to ride this one out?’  The annoyance has never decreased though despite all the occasions this has happened!

So, in essence, I’m hoping this funk doesn’t continue for too long.  In the meantime, I will exude the trust which I try hard to carry with me and know that I will be taken care of – eventually!