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.

The Underlying Meaning of A Tattoo

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Life is so fragile.  Sometimes we need a gentle reminder to know that what is happening in our life both positive and negative, will not last forever.  Our lives are constantly changing.  We never live the same precious moment twice.

Today has been very significant in light of this.

My mum is the wisest person I know.  It’s not just because she’s my mum but because she has lived and experienced so much from when she was young through to where she is now. With the many hurdles for me (and looking back now insignificant ones too!), she always had words of wisdom for me.

Perhaps one of the most important quotes that I won’t forget is, ‘And this too shall pass’.

I thought it sounded lovely and I could relate it to life. ‘Yes’ I thought, ‘That’s a delightful quote and so very appropriate’.  However, what I failed to realize was as nice as I thought it sounded, I never fully understood it.

As I scrambled through the years fighting through the lessons that were being thrown at me, those five words kept returning intermittently. I would acknowledge them but continue on my merry way.  It is only recently that I have learned to value them for what they actually mean.

There are numerous situations which test us.  Some more than others but nonetheless we eventually find the light at the end of our tunnel.  It is when those strong emotions and incidents occur that we need to remember that this moment isn’t going to last forever.  Believe me, I know at times this seems impossible!

With time and all that my life has encompassed, I‘ve tried so hard to remember the phrase my Great Granddad would say which was ‘Keep your pecker up’ during the periods that weren’t going as smoothly as I’d ideally like.

Having epilepsy has made my existence unpredictable to say the least.  It has brought frustration, at times anger, a plethora of other emotions alongside feelings of deprivation as achieving goals has been so much harder.  It was not just with the tonic clonic seizures (grand mal) either.  Now the absences have decreased I can appreciate how tricky life had been.  On bad days I could have up to eighty absences which left me spaced out and with terrible memory recollection.  I was functioning so slowly and with all of those components together the stress that my body was under was immense.  It was a catch twenty two situation.  Despite this I always forgot to call on those five little words to calm me down allowing myself to say, ‘You know what? You are entitled to have this reaction, look at everything you’re dealing with.  These are circumstances which won’t continue forever because tomorrow is a new day.’

Age has enabled me to observe how that phrase can be applied to everything in life.  When I say everything I really do mean everything.  In my present, I feel that although difficult situations will come my way I will work through them so I can take on the world. When life decides to quiz me to see how much I can deal with, I am able to by-pass the negatives and treasure the positives as all good things pass just as much as the bad.

I was thinking this morning as I decided the subject of my blog, ‘How can that quote be applied to a relationship when some relationships don’t always end?’  The answer became clear and it is this; it isn’t the relationship that will necessarily end but what it is comprised of.  We as human beings are constantly changing and evolving therefore a relationship will mirror that.  We learn, we change, we become wiser and we gain more knowledge.

This year has been quite the rollercoaster with several relocations, a change in epilepsy medications, working through the side effects, a cancer scare, a diagnosis of another condition and surgery but I find none of that matters because it has all passed and life has moved on as it does.  There were times when I felt lost, wondering how to process certain aspects of this but I eventually reached a place of peace understanding the ‘why’s’ and the ‘how’s’.  I deem this quote as one of my most central principles.

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So on a completely different note, I have been considering having another tattoo.  I am addicted and have often been very stern when talking myself out of what could be a grave mistake!  However, with the cancer scare in particular, it really brought home to roost that I needed to practice what I preach.  I decided what better way to practice than to be able to look down at my wrist and see it imprinted for the rest of my days where it pertains all of life’s encounters.

The Difference Between Epilim & Depakote!

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Oh the delights of changing AED’s!  I’m a prime example of someone with epilepsy whose medication controls seizures allowing me to live life as others who don’t have epilepsy do.  It is easy to become complacent as life continues without side effects and/or regular debilitating seizures. It is only when side effects create an imbalance affecting the equilibrium, that I remember I have epilepsy.

Being the sensitive little soul I am, my body reacts very quickly to new AED’s when it rejects them.  I’ve tried and tested a multitude of medications to see which could be successful.  Euthosuximide offered depression, the longer I was on it the worse the side effects became leaving me in a suicidal state.  Keppra instigated hallucinations creating dark coloured worms that slithered about my pillow at night causing panic.  That too was removed from the chemical blend.  There was Lamotrigine which offers the most serious side effects potentially causing Steven-Johnson Syndrome.  A short while after taking it I developed a skin rash and came off it quicker than you could say Steven-Johnson Syndrome!

When it comes to seizure control, it simply comes down to trying and testing certain drugs related to the type of seizures suffered.  I have been on Sodium Valproate (Epilim) for the last twenty three years to control my generalized tonic clonics (grand mals).  However, the absences were coming fast and furious and it was obvious that they had no desire to leave, hence the experimentation.

Sodium Valproate is known as Epilim in the UK and Depakote here in the US.  They are assorted in variety; with a purple coating, in white, crushable, timed release, as an injection, sugar free and more and lest we forget the different dosages.

The initial tablets prescribed had a purple coating and unsurprisingly, I had a reaction to the coloring in them.  After that failure I moved on to crushable with no colour, just your good old sparkly white.  These were effective; finally I had found an AED which worked for me (minus the absences of course!).

Having changed my consultant and hospital due to relocation, I find I am always provided with the information that ‘I really should change the Depakote as I’m of childbearing age’. Depakote is the worst possible drug to be on when pregnant because of birth defects. It continues to impress me how much the consultants care.  Even though in reality I am just another person out of many, we all will be seeing them for similar, if not the same issues.

I rethought the idea of childbearing as I will be thirty four next week.  I decided that I would shake it up a bit and try something different because after all, you never know the future.  After much consideration, as I don’t have many options with regards my meds as all the appropriate ones have been unsuccessful, one of the points I deliberated over is that our bodies change over time.  What your body has rebelled against previously could have a positive response years later.  This is why I decided to try lamotrigine again.

So off I went on my merry way slowly building up the dosage just in case the rash reared its ugly head again.  I’m delighted to say that since starting it it has had no ill effects.  With the lamotrigine being accepted by my body, the next issue to deal with is the Depakote.  Now as per normal when I travel, my hand luggage is packed to the brim with boxes of Epilim.  Moving to Canada and the US was no exception.

Using up the stash I had brought with me, about three weeks ago I finished the batch.  They don’t issue the Epilim in the US so I was given Depakote instead.  These particular tablets are timed release plus they have an orange coating.  Over the last few weeks I feel like I have slowly become more ‘zombie’ like.  I’ve had more seizures where originally on the lamotrigine and Epilim they had decreased drastically. Memory and speech have also become troublesome.  The tremors that accompany the meds have intensified; however, what’s quite entertaining in a way is that I can’t take photographs that are clear due to a lack of keeping my hands still!

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With radical changes to my meds, I have increased the lamotrigine and decreased the Depakote faster than originally planned.  Hopefully this will resolve the issue.  The lesson I have learned is that even though Depakote is meant to be the equivalent of Epilim, it is clearly not.  I am sure that will be the case for other AED’s too.  ALWAYS check before taking what you’re told is the ‘same drug’ because in my case and I’m sure for many others, it is not as straight forward as it seems.