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!

Childhood in Adulthood!

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Who would have thought someone could be so grateful to be at a bus station?  But yes, that would be me.  Sat here with my green tea and bottle of water drinking as I type, the realization that once again my mum is right is proved through the carting of suitcases, bags and large hand baggage.  A massage to remove the many knots which have developed in my shoulders is required, but on the up side there have been no other repercussions.

As my trip home winds down, the bus I take from Vancouver to Seattle is the last leg before reaching home.

Reflecting on the last three weeks, I focus particularly on the emotions which have been evoked and how it was they came about.  I am a sensitive soul reacting to people’s responses and actions and like most, it may not show, but inside it is magnified.

The extremes of joy and sadness, experiencing that sensation of being loved unconditionally, the unforeseen disappointments and an overwhelming feeling of being grounded.  Returning to my origins conjured up an unexpected pride.  Once again, as life’s disappointments and negativities slink between the cracks of pleasure, long term it proves to deliver great things.

One of the other jobs I nailed was rooting through my past lives discovering treasures which have been confined for so long in boxes. I was like a kid at Christmas as I opened up boxes, rediscovering all my possessions.  Then came the dilemma of deciding exactly how many and which of my belongings I would take with me on my journey back and incorporate in my life in the US.  There were many lucky ones who traveled back in the brightly colored means of transport.  However, there were countless of which had been left behind.  It felt like having to choose one child than you love more than another!  Materialistic they might be, but at the end of the day they are still ‘things’.  For example, the sentimentality of my William Sonoma spatula is that I bought it in New York by Central Park whilst I was killing some time.  Every time I see it, that memory returns.  Crazy?  Perhaps.

Surprisingly, for someone who has a terrible memory, remembering where and how I got various items seems to be something I have down to a fine art no matter how long ago it was.  Random I know and I associate it with all my grey matter being knotted and tangled up up there!

Unpacking will be just as exciting as originally discovering and packing it. This time I have someone who will sit down with me and make the right ‘oooh’ and ‘aaaahh’ sounds as I get every single item out.  You can imagine I’m not going to get a thank you for that!

The Christmas decorations were unwrapped from their protective layers from the box to decrease chances of damage.

The Christmas item which is most special  and doesn’t come into question as to whether it was coming back or not, is the pillow case that was made with my name on it by my mum.  Every year it would come out and both my sister and I would lay ours out on the end of our beds before going to sleep.  We were filled with excitement and very sure that this year would be the year we would stay awake until Father Christmas came and filled up our pillow cases.  Obviously, that was never achieved.

The feeling of elation to wake up and feel a great weight just below our feet was indescribable. I’d always scamper down to the end of the bed and feel the shapes of all the goodies that awaited me under the carefully wrapped gifts.  Hopping out of bed I’d muster all the strength I had to pull the pillow case off the end of my bed whilst taking enormous care not to bump or let any of the presents fall out.  It was then dragged into my parent’s room and would normally meet my sister on the way who was undertaking the identical operation.  However, I do remember becoming frustrated as she always slept longer than I did.  I forever woke up ridiculously early and it got to the point where I was given a time that I was allowed to wake my parent’s up with my pillow case.  You can imagine how desperately slow that time went.

So, having shared a brief insight into my cherished Christmas memories and the sentimentality of that pillow case, it represents the merging of my two lives, my past and my present. This is the reality of growing up and being an adult; however, it also shows how you can still take your childhood with you whatever age you may be.

Tea For Two

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Well my following friends, I apologize for my sporadic blogging. I have been completely absorbed in the precious time with family and friends here in good ole’ Blighty.

Since returning to England there are things I’ve noticed that contrast greatly to those in the US.  Unfortunately, the only downer has been the intrusive side effects from these blasted drugs.  I am just grateful that there have been no seizures other than the absences which are a minority.

Having previously lived in another country I didn’t think this would be a consideration.  However, I’ve found myself in limbo.  At times my brain thinks, ‘I’m in Seattle!’ and vice versa.  I was watching television this morning and an advert featured a British bank promoting reduced mortgage payments and I thought, ‘Wow, they have that bank here in the US, that’s new’.  Of course it was then I realized I was in England not the US so naturally it would be there!  All these thoughts occurred in a split second but it’s my brain’s confusion of location!

Then there are the times when I find myself using American words such as cilantro instead of coriander, eggplant in place of aubergine, bucks instead of pounds and commercial replacing advert.  Additionally, there is the change in pronunciation of the words.  You have ‘bayzil’ instead of basil, ‘yoe-gert’ instead of yoghurt and ‘tomayto’ instead of tomato. You catch my drift?!

When ordering a hot drink to take away I always ask for black tea as there are a plethora of black teas in the US, therefore, it is necessary to specify when ordering.  However, I get a look of pure bewilderment by the barristers who have absolutely no clue what I am referring to until I rephrase it as ‘tea’.  I forget that tea here is automatically black unless specified otherwise.  Then there’s ‘builder’s tea’.  Normally strong, black tea with milk and two sugars, it can be found in greasy spoon cafe along with a magnificent fry-up making a cracking cuppa.

This leads me on to another tea issue in Canada/the US.  I know I mentioned it in a previous blog but whilst visiting the UK it brought it considerably to my attention.  In Canada/US the tea is a bit ‘hit and miss’.  I’m not quite sure how that could be as it’s water and a tea bag.  It is a delight how everywhere I go whether to a friend or family member’s house, an upmarket restaurant or a greasy spoon, a mug of rosy lea is always on point. (For those unfamiliar with cockney rhyming slang ‘rosy lea’ translates as tea).  I have concluded that the Brits just know how to make it.  In no way does that mean I will be giving up my black tea addiction on return to Seattle.  However, I think I will need to invest in some PG Tips and see if that makes my tea loving taste buds happier.

Also on my ‘to do’ list was a cream tea.  I’ve never had one and the thought of a scone with butter, jam and a large dollop of clotted cream alongside a pot of tea was delightful.  Not only will it clog my arteries at the mere thought but on consumption, that won’t really matter.

One of the surprises organized by the best friend anyone could ask for was a full afternoon tea.  This was a very special experience.  In the pavilion of a stately home, there were beautifully coiffured grounds as our backdrop and view.  There was a bone china tea pot accompanied with bone china cups.  On a three tier cake stand the top tier had little bite size goodies which included brownies, shortbread and cupcakes.  The second tier held what must have been scones bigger than the palm of my hand.  They were so big and the clotted cream which was overflowing teetered right on the edge of the plate.  The jam meanwhile had greater confidence by possessing a much better balance.  On the first tier there was a selection of delectable sandwiches.  With their crusts removed (would you expect anything less?!), the fillings comprised of egg, smoked salmon and cream cheese, ham and mustard and chicken and bacon.

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With enthusiasm and determination having had a miniscule breakfast, we intended to demolish it all.  Needless to say it returned home with us in a take-out box.

Realizing I’m nearly at my word limit, I should probably wrap it up.  Even though I have five days left it has been an incredible trip.  This has been another prime example of defying the health circumstances which in truth have left me feeling pretty rough around the edges.  I have fully appreciated and treasured each day with friends and family discovering ways in which I can find ‘freedom with epilepsy’.

The Fear of Suffering & its Unpredictability

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Well, today’s writing location is from a train.  Although it’s a simple change I can’t help but be a little bit excited as this is a novelty.  I love to write as I travel.  With a suitcase (or two) by my side and my laptop in my bag, if it was down to me I’d have it this way all the time.  Observing and recording human interaction generates ideas and so many thoughts and questions.  The first leg of the journey allowed me contemplation as I was slowly losing the will to live attempting to read my book.

So, the writing.  There are so many things I want to voice but just don’t know where to start.  To cover them all would create the most disjointed piece of written literature known to man.  Although I say literature, could it be? I certainly don’t compare my mere alphabetical doodling’s with the mighty Shakespeare or do I? Have I got potential?!

A plethora of thoughts have all been swirling through my mind like a tornado.  My mind hasn’t crescendo’d to this stage for many, many months.  It swings between sadness and fear and joy.  As an aside, I really like the word joy.  It feels like a genuine deep rooted emotion whereas happiness feels like it could play games. In some situations happiness is appropriate as its meaning is very fitting.  For occasions when it is used to express joy it can appear like something it is not.  It has connotations with its fellow potential companions ‘fleeting’ or even ‘fickle’.  My subject matter/focus is on life, its trials and its tribulations by questioning rather than associating with negativity.  It brings together the realities of life that are not always joyful.  However, it offers life lessons.  We will undertake and transport these with us to the next page of our book of life, even if we don’t understand the ‘why’s’.

The last couple of weeks have been filled with an influx of information of friends and acquaintances who are suffering.  They are going through experiences they ideally wouldn’t have to.  As I read this back to edit, I originally used the word ‘shouldn’t’ twice.  Upon rereading I wasn’t so sure that that was the right word.  Denial was a word that popped into my head and I am ruminating on that one. I wonder whether to an extent, not only for me but for others, it may be too overwhelming a thought to comprehend.  Understandably so and therefore it just ‘shouldn’t’ happen.   Even though I’m a very positive person, (and I continue to plug that!) believing that ‘everything happens for a reason’ and ‘when it’s your time it’s your time’, are phrases so challenging to instigate in these situations.

I am aware of a genuine sadness for which sorrow and pity are of no benefit.  Empathy and compassion are required.  In these circumstances I send healing energy to those directly and indirectly affected hoping to help in the only way I can when not close by.

On a completely different note and in addition, there has been a fear that I haven’t felt for many years, probably since I was ten or eleven.  A fear that is so vivid it grips me with its gnarled icy fingers.

I mentioned my AED change (surprising as memory is one of the elements that is becoming more and more problematic) and with that it has brought a number of unexpected side effects.  I have been decreasing and increasing different drugs of varying amounts which are not exact to my previous dosage.  My body was more than happy to function prior to the change and since, it has caused nothing but chaos.  It’s like my brain’s electrical impulses are deeply confused shooting electricity all over the place as if it were trying to perform a laser show.  It has taken a particular fancy to my eyes.  It offers me free sea legs and what feels like a hangover without the alcohol content because after all, there’s nothing quite like waking up to with the room spinning.

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It is the unpredictability and lack of control which create the fear.  It has been a useful tool as it has brought home the severity of epilepsy and the vulnerability which many endure on a day to day basis.  For me, all I can do is take one step at a time and roll with the punches.  I make sure I keep upbeat and send out vibes of ‘I am not going to have a seizure’.  With speech, memory and increased tremors I know that this will be temporary.  I am putting that right out there into the ether.

Do you know the part that upsets me most?  I can’t knit anymore but as with everything, ‘This Too Shall Pass’.

Yorkshire Wildlife Park Foundation

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This is a wonderful man and friend with immense strength.  Similar to the ALS challenge I am often very moved by the strength of people, how they overcome ill health through determination and the challenges/charity events/awareness that they focus on.

When I began setting up my blog I called upon Peter to ask some questions and he helped me immensely with his experience of blogging and the website he had started.

Peter was diagnosed with terminal lung cancer and was given six months to live, three years later he has made this video. Can I ask all my friends all over the world who support and read my blog to take five minutes out of your day to please, please click on this link watch the video and share with friends and family. It is an incredibly worthy cause of which awareness and funds need to be raised.  It is his very last wish and I am asking you to be part of helping him achieve that.

Sleeping Beauties

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Here I am having safely arrived in England reacquainting myself with the culture, architecture and most importantly the rain!  It is a home away from home as Seattle is starting its ‘rainy’ season which we were warned about prior to moving.  For me, it didn’t make much of a difference as rain is in my DNA.  Surprisingly enough, I discovered just how British I am during the heat of the summer.  I was sweltering during the days and as much as I love the sunshine there were little cries of, ‘I’m melting’ which escaped as I prayed for just one cloudy day to break up the heat.  I shouldn’t really be complaining should I?!

It’s quite ironic really because as much as I love the sunshine I am wondering whether I am morphing into one of those Brits who continually complain about every type of weather.  If it rains it’s too wet and it’s not enjoyable to be outside.  In the heat it’s just too hot and unbearable, affecting our ability to function.  If it’s cloudy for any length of time there are complaints that there’s not enough sun.  If it’s winter it’s too cold and should it snow, G-d forbid as that stops public transport and it’s a pain to get anywhere or do anything.  No wonder the Aussie’s call us whinging poms!

I don’t remember where I heard this but it’s very apt, ‘there is no such thing as bad weather if you’re dressed appropriately for it’.

When I was living in England, I was fortunate enough to be able to walk to work along the prom as I lived right beside the sea.  On getting out of bed I’d peek out of the window to see what the weather was doing and if it was raining heavily my heart couldn’t help but sink a little.  ‘Alright’, I thought, ‘this calls for the heavy’s’.  So I donned my motorcycle waterproof trousers and jacket, (clothes from a previous life) and proceeded to walk to work looking like the michelin man, rustling loudly and walking as if I was making my way through a snow drift.  As soon as I got to work stepping into the office I undressed and as intended, was dry as a bone.  I couldn’t help but smile smugly to myself as everyone else had drowned on the way in.  The fact that I looked utterly ridiculous en route was long forgotten.

As I sit here writing this blog I look out of my window I see the grey clouds dominating the sky as the rain falls.  There’s something so lovely about listening to the sound of the rain as it pitter patters against my window, almost hypnotic.  It got me to thinking about my sleeping routine and my probably unreasonable response to how my beau falls asleep. He has the sound of the sea and rain resounding throughout the room from his phone through speakers.  If I’m honest, (which I have been don’t you worry!) it drives me absolutely nuts.  I don’t know why because it doesn’t really differ from the real thing but I figure it must be a certain level of sound which is sporadic enough to stimulate my brain.  Although the sound is quiet it appears to magnify as it arrives at my ears. It becomes the only thing my mind can focus whilst my brain dances around in my head telling me it’s payback time having worked so hard during the day.

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In a bid to override my brain’s tomfoolery, for one reason or another we had to buy a dehumidifier.  Sing Hosannas!  Not only did it block out the sound of nature but it had a sound level that didn’t interfere with my brain functions.  Sleep has been joyous.  As an aside, a very important point regarding sleep is that it is essential if you have epilepsy.  It is so important to get enough of those precious zzz’s as tiredness can lead to increased seizure activity and believe me, I speak from experience.

So on that sleepy note I think it’s time for me to treat myself to a power nap.  A valuable and blissful addition to my day introduced by my wonderful beau who has the reputation of being the king of all nappage.

 

Sailing the Seas of Medication Changes

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Every day is a new day and that comes with new and exciting events.  For me, I woke up to find myself on a boat, yes a boat.  Getting up I realized I was gently veering from port to starboard on choppy seas.  The water since then has calmed and I sail along with a breeze varying in strength.

I always tend to forget that I have epilepsy and look at sufferers with compassion and a streak of empathy. I forget how difficult life must be and it rarely occurs to me that I am in the same boat.  This is not through a lack of acceptance on my part but through my determination to lead a life that is not interrupted by my epilepsy as a whole.  For some, I know this is not as easy due to the type of seizure activity they experience and how often it occurs.  I certainly count myself as fortunate with what I view to be a gift that I have.  It is mild in severity yet not yet fully controlled.  This motivates me to organize my life so that I maintain as normal a life as possible.

With this morning’s sailing lesson as I swerved (and continue to!) around my boat, I realize how much I have to achieve today.  With my impending trip to England tomorrow I have much to prepare in readiness.  I think perhaps my boat and I will take a trip into town and hope that the water is not too choppy.  I hope that I am able to do my errands and meet a friend for lunch without the winds increasing leaving me plastered against a side of the boat which will require a visit to the lower deck.

It seems that I will have covered most modes of transport over the next few days; my legs predominantly, the bus, an aeroplane and finally my boat which I am trying to steer to calmer waters.

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On a final note, as you read this please accept my apologies for any spelling, grammatical errors or missing words.  Writing this has not been as easy as normal and has required many proof reads to check for all the above so that I can create an understandable piece of writing.  My head (my ‘boat’) is swimming as my balance and vision (the ‘choppiness’) are askew.  As intrusive as this is, I find it particularly useful as it makes superb subject matter that someone could potentially resonate with.

I am always up for experimentation and at the moment and with a distinct change in medication that is exactly what I am doing.  It is to aim for a better life and to create a healthier environment for my kidneys and liver so they don’t have to work quite so hard as they do currently.  They have served me so well over the years and I feel if there’s an opportunity to give something back and create less stress for them then that is exactly what I shall do. It should be unsurprising to me how chemicals such as these can have the effect they do but I still remain surprised.  Perhaps this is because I have been served so well over the years as my epilepsy has being managed impeccably by Epilim, the British version!

You roll with the known, you roll with the unknown, you roll with the unexpected and you just have to roll with life because this is life!

Writing reaches an unspoken supportive hand to others.  You will not get any notifications and it will remain unknown whether this hand is grasped but as long as it’s out in the ether, someone may just reach out and hold it.