Birthday wishes and having faith.

“To accomplish great things we must not only act, but also dream, not only plan but also believe”- Anatole France.

Poignant words for such a fitting couple of days.

Before I take this post any further I would like to thank you all for your continued support, your love, your comments, your best wishes and your constant input when Epilepsy awareness is involved.

Yesterday a little trophy popped up on the right hand side of my word press blog to inform me that it was the first birthday of Sazzle’s blog.

Overjoyed at something so simple as a little icon on my monitor it started to sink in the posts I’ve written over the past year and how much of my life has been detailed so far on this blog.

As you are all aware this blog was created originally so I could document my feelings towards a condition that I felt deprived me of achieving my goals, making accurate decisions that would benefit my future and accepting the fact that Epilepsy is a part of me as it is a part of everyone in it’s path.

Let’s just say a part of me didn’t want to accept my Epilepsy. To me the only way I could accept I had it is when it’s gone entirely.

Compared to other illnesses/conditions that tend to get far greater media coverage I thought I would chip in and get my contribution out there to see if we all could relate to one another and get the answers about my condition I’d longed for. Never for a second did I think it would get noticed.

The quote chosen today is one that has made me believe that the inevitable can be achieved and although this blog has not been published and isn’t sitting in high street stores for all to read the followers who have been here since the offset will see how important writing Sazzle’s blog is to me.

Having Epilepsy for 20 years has been a battle since childhood and although currently seizure free Epilepsy has called the shots and prior to writing Sazzle’s blog forced me into making a change.

As corny as it may sound you have all been there to witness the concerns I’ve had both past and present and have given me some fulfilment in my life whenever I now mention the word Epilepsy as I know I’m not alone.

The advice you have given is second to none and the contribution you have made to me whether it be via your own personal blogs, websites or just general advice has allowed me to make subtle changes in my life for the better.

I truly hope that I have made you see that although it’s extremely hard to come to terms with your condition that acceptance is key and that there can be light at the end of the tunnel.

Being diagnosed at eight years old was the first chapter in which my family had to accommodate a condition none of us ever asked for.

When it comes to Epilepsy I witness so many people both face to face and online have this struggle to accept that this is a part of their life. I was and still are one of these people.

Although I sit here writing about my experiences there is still a part of me wondering when the next seizure will arise, whether a shaking episode is around the corner and whether I will resort back to old habits. The only difference now is that I have hope. I didn’t have it back then.

Throughout this time medication has been a chore, although a necessity neurologist appointments have felt like they lasted an eternity and albeit the medical profession the idea of leaving my life in someone else’s hands has on occasion made me feel rather uncomfortable. I have come to realise that these worries aren’t solely my own but happen to us all particularly when our loved ones have to endure the same concerns as we do.

I’ve said this previously but their love doesn’t just provide us with that stability but gives us the second chance to want to move forward and to do this knowing that we have their support.

After reading a recent blog post by my friend Angela I became extremely emotional as like many parents out there has a child with Epilepsy who every day proves to both her and the world that he has the strength to continue and that the love his family bring gives him the belief to fight Epilepsy with all his might.

Reading from her perspective made me rewind back fifteen years when my parents were suffering the same asking all the relevant questions to determine what path they were to walk with their daughter. The people who stand by us are the people who should be praised and should be given credit where credits due.

Along with Angela I’ve spoken with advocates across the world who have formed their own websites, have given an insight into their family’s emotional connection with Epilepsy, have created their own blog posts, have and are in the process of doing sponsored events and who have frequent meetings with the Epilepsy community to generate awareness on this condition.

This in itself brings me great happiness as when I was a youngster although there were support groups available there was always this fear that my opinions on my new found condition may have been misinterpreted and that people could not associate with how I was feeling at the time.

Looking back at the seizures, the shakes, the worries of how other people will analyse my condition has caused me distress over the years however is something that could have been prevented if I thought differently.

Instead of sitting here now beating myself up about how I could alter past events I now sit here thinking to myself that thinking this way will not prevent an episode from arising.

A question for you. Have you ever thought that’s it’s not necessarily you that has the problem but it’s others that don’t wish to understand or is it because others are uncomfortable to approach this situation?

I’ve learnt that everyone’s personalities are different.

If we can say we are trying our utmost to be positive and to live life the best way we can under the circumstances we have then why should we sit here questioning ourselves because by having faith in ourselves may put this negativity we have to bed.

As for the rest of the week..

Exercise- Well.. The Davina DVD is getting hammered and I’m starting to see that my figure is getting a little more defined. That and feeling the burn from my friend Michelle’s ab routine she set me.

Food- The actual food itself has been reduced and is extremely tasty. The only down side is the temptation against sweet treats. Yesterday I succumbed to two mini gingerbread men and a small flapjack at work. Today’s a new day!

Family- Still as daft as a ships cat but I love them.

To conclude today’s post. People believe that accomplishing great things gives you power however my interpretation of power is ensuring that those mini victories in life such as making a cup of tea when you have shaky hands, being able to leave the house when you feel apprehensive or being able to try something new is acknowledged and makes you feel good. It’s about breaking a cycle you’ve wanted for so long to do.

You know what I think about all of you and your contribution to generating Epilepsy awareness. It has been a pleasure over the past year to speak to you all and to get my story out there so we can all bond and have that time to reflect on what’s important in life.

I’ll leave you with a final quote that I hope sums this post up:

“Understanding brings control”- Bonewitz

And I now understand what Epilepsy is.. Long may this continue.

We are what we do.

“You are what you think, you are what you go for, you are what you do!” Bob Richard.

What a statement eh?

Gosh that quote didn’t half hit me hard when I read it and believe me I’ve read it plenty over the past 48 hours. Sent by one of my best friends this quote inspired me to write today’s post now I’ve eventually found the time to get it written.

Today’s blog is all about questioning and wondering whether we question ourselves excessively to the point where we are on a road to nowhere by thinking this way. My interpretation of the quote is about practicing what you preach, less talk more action and noticing the negativity sooner rather than later within yourself that at times can bring you down.

A question for you all. Have you all ever sat down after a rather productive week ever thought to yourself why am I feeling a tad dissatisfied? Why aren’t I pushing myself more? Is it because I’m unwell or is it something else?

Now many may question (including me) why I’m feeling this way. I could sit here and possibly put it down to having the good old common cold and having headaches towards the back end of the week however I don’t even think it’s that. What I think is that I’m at a stage in life where I have literally NOTHING to worry about.

My Epilepsy is relatively under control, my shakes aren’t as frequent, I have my moments however who doesn’t and the only thing I need to give a big heave ho to is my diet and exercise regime. Other than that what’s actually the matter?

Is it because I’ve allowed myself to worry over the years that I’ve got into this train of thought or is it because I’ve had to exhaust every eventuality incase a seizure or a shake should arise so that I’m prepared for battle?

Now I’ve touched on this subject previously in which I’ve sat here questioning my thought process and analysed why I am a certain way.

Is it because of my anti epileptic drugs and the side effects they bring? Is it because I’ve had segments of my life where I’ve hidden behind my condition or is it because I’ve never given myself the opportunity to just be me because I’ve allowed my condition to be the prominent feature in all of this?

As a youngster I would sit there and worry to the point where I wouldn’t know who I was. I would sit there wondering whether friendships would stand the test of time, whether I was good enough, hoping my life wouldn’t fold around me and whether my parent’s relationship breakdown posed any relevance to this pattern I could see emerging.

After years of thinking this way it became a habit a habit that I couldn’t break and a one where I tried so desperately to resolve with little result. It’s safe to say I became my own worst enemy and instead of accepting that a problem was apparent for all to see I thought this way of thinking would miraculously resolve itself without me putting the effort in. Let’s just say it didn’t till the following happened:

As you are all aware my family and I are extremely close. We’ve had our moments however deep down I love my parents as they love me. Although I could throttle my parents repeatedly growing up they only ever had my best interest at heart and would give me the opportunity to make my own mistakes in life and to see that trust should not be readily used unless that trust is earned.

One day after a normal day at work I remember having a moderate shaking episode, smelling what I thought to be a potential aura and questioning whether a seizure would happen.

After asking my husband to make a phone call to my dad I remember sitting with him and having a blurred conversation about where my life was going and why I wasn’t happy. This was amongst the usual whiney Saz who in times of need constantly asked “Why is this happening to me? and “Why can’t my Epilepsy allow me to be happy”

Looking back and realising I was acting like a whingey child throwing her toys out the pram and not getting her own way I remember my dad feeling sorry for the shake but not feeling sorry for my attitude.

Thirty minutes in all I can remember is my father telling me quite calmly to “Snap it off and get a grip of yourself, it’s not your fault that you’re shaking but you can’t blame others for who you are and how you’re behaving right now. You’re the one preventing yourself from being happy so start being fucking happy Sarah”

Not getting the attention I thought I needed I sat upright shaking like crazy and instead of continuing with this petulant behaviour I stopped crying, focused on his voice and allowed the shake to take it’s course.

Looking back as harsh as that sounds to others reading he had a point. Why was I behaving the way I was when I couldn’t prevent the shake from coming? I couldn’t blame myself anymore because I was responsible for my behaviour therefore instead of just letting nature take it’s course I was lashing out knowing fine well it wouldn’t benefit me at all.

After having numerous conversations with my parents (my dad in particular) it dawned on me a few weeks ago that life is whatever makes you happy. My dad apologised for those words however by then I knew that I couldn’t continue going in the direction I was particularly when my shakes were involved therefore made the conscious decision to reduce my hours and to see if this made a difference. So far so good.

I knew in myself that my attitude was all wrong. I wasn’t being myself I wasn’t being the person people had a laugh with and was made to feel at ease around. I was behaving like an arsehole with a me me me attitude and unfortunately behaving in that manner gets you nowhere.

As for the remainder of the week..

Two words. Langley Castle. Need I say anymore? For once I felt like a queen sitting on her throne in a gargantuan drawing room having quality cuisine with the one I love. As part of a Christmas present purchased by my dad and stepmam and didn’t we half lap it up! I loved every second of being there. Although only there for the one night the castle not only had history and hospitality but made me proud to be British.

Amongst oil paintings of the Kings and Queens of England, tapestries on the walls and the log fire burning here we were little old us having tea, coffee and scones feeling like royalty for the day. For those who have saw the pictures will see that I made a friend suited and booted in armour who shall be named Bert who stood upright at the bottom of the staircase. He didn’t look posh enough to be an Arthur!

As for the healthy eating and exercise. It started properly again yesterday.

After getting some inspirational advice from my pal across the pond I thought to hell with this there’s no excuse get back on that horse and get it done! To now I’m doing well… That and winning £33 on my football bets.

I can hear the “Hallaluyah” song playing in the background as you read this because I never win. I’m like the unluckiest gambler ever.

To back up the “unluckiest gambler ever” name I’ve given myself let me explain how unlucky I am.

Once upon a time I worked for an office where 285 people worked. 250 Easter eggs were bought for the office’s Easter raffle. When it came to drawing the raffle I was one of the 35 people who didn’t get an egg! I mean come on how unlucky was that? Out of principle I didn’t show face however was well miffed and treat myself to a mars bar from the vending machine to console myself.

Anyhow to conclude today’s post…

I’ve come to the conclusion that life is not all about materialistic things lording it over others to make you’re life look that little bit better, it’s about having that fulfilment within yourself and knowing that life has a purpose. Unfortunately health complications can stand in your way from time to time however the remainder of your life is clasped in your own hands.

People come and go from your circle that once were the epitome of what you thought life was however as time progresses and experience gained you come to realise who you are drawn to, what you have in common with others and how some people are all about their own personal gain instead of walking alongside you.

It’s about appreciating the seizure free days, knowing that the majority of life is in your control, breaking loose from the aspects of life holding you back but ultimately being happy with yourself and not forgetting to give yourself that me time. We are what we do and we are who we want to be.

The finish line.

“A man is not finished when he’s defeated; he’s finished when he quits”- Richard M Nixon.

Defeat, worry, resentfulness. These three words are the one’s that come to mind when I read the quote above.

I think it’s the subconscious feeling of not giving it my all, the feeling of quitting when I know I could have tried harder.

Do we all get this feeling from time to time or is it just me? Do we ever feel that we’ll cross the finish line?

This is the thing with Epilepsy because there tends to be a fine line between being defeated and having to quit because your body’s had enough. The difference between throwing in the towel and standing tall in a crowd of people you believe are normal when to be honest this couldn’t be any farther from the truth.

The past week has been a one that has challenged me immensely. I have tried my hardest to be positive however my mind for whatever reason is elsewhere.

At present I’m getting my bathroom refurbished. The house feels like an absolute shithole however I’m thinking of the end result and the many relaxing times ahead where I can hopefully have that long soak in my new bathroom and take in the changes that have been made to make our house an even nicer home.

Unfortunately for me I’d like to call myself a “Yesterday person” i.e. someone who wants the end result immediately, someone who wants everything yesterday and who quite literally wants everything done at the drop of the hat. I appreciate that unfortunately things can’t be completed overnight therefore this mind-set must change and I’m getting there slowly but surely.

Maybe it’s the fact that I know that if I become unwell I cannot just be myself because there’s three workmen strolling in and out of the house, maybe it’s that subconscious thought that should a shaking episode arise that the workmen would have to resolve this issue and I would feel embarrassed at the thought of three butch blokes (who aren’t remotely attractive) having to sort me out.

Instead of worrying what I should be doing is thinking to myself that whatever will be will be, so what if I start shaking what can I do about it? Come Tuesday I can lie in my new bath with a book watching my hands go crinkly off the duration of time spent taking it all in. Let’s just say I’m turning a negative into a positive, there is indeed light at the end of the tunnel.

After deviating off course with my bathroom refurbishments I thought the quote today was quite apt in addressing other issues of my past and to make you see that we are all responsible for our own actions. I’ve found that the majority of the time it’s up to us to acknowledge our problems in order to move on and move forward.

As I’ve mentioned in my latest posts blame appears to be a word of great significance a word that people tend to use when things aren’t going their way.

Instead of being an outsider looking into your own life and seeing what issues need addressing there seems to be that “brush it under the carpet” habit that we have all (including myself) got into and unfortunately it’s safe to say it has only lead me to live a lie for half of my lifetime.

There have been many instances where I’ve used my Epilepsy as the barrier to cry against, prop myself up against but the most common is to hide behind. I’m not going to lie I have (particularly when I was younger) used my condition in order for me to live my life to it’s full potential. Here’s one in particular:

As a child with Epilepsy I had a good few occasions where I would turn into a stroppy madam when the word medication was mentioned. Asking whether I’d taken my meds at regular intervals turned into a full blown argument because I thought they were interfering and as for me taking my medication it became a chore I wished I could eradicate.

I remember when I was younger I went through a spell where I wanted to alter my meds. I wanted to have that one day of normality on the off chance in that day I would have grown out of my Epilepsy and I would feel like I had crossed the finish line without the assistance of someone else’s input.

I wanted to feel like I wasn’t being defeated by my Epilepsy because I was the one making a decision that would benefit ME not my condition.

Instead of feeling elated I ended up feeling deflated because after making such a rash decision I ended up falling down a flight of stairs, having two grand mal seizures, staying in hospital for three days hooked up to numerous machines and questioning whether it was all worth it.

If anything I was the one who was defeated and it wasn’t because my Epilepsy wanted to defeat me I let myself down. I made that decision all on my own and to this day wish I never did it.

I could sit here and put it down to age because I was a young adult or I could put it down to the general stresses life can bring however realised that all the excuses in the world wouldn’t change the fact that I acted like an absolute twat putting my family through all that worry and taking two steps back.

I quit on myself and instead I should have seen that I was the one putting myself in jeopardy no-one else.

Twenty years on my love/hate relationship with medication still stands however it’s become an essential requirement to enable me to live my life and irrespective of the many side effects that medication brings that without it I would be reluctant to leave the house. I would end up back on that bus (explained in my previous post) alone worried that a seizure may happen or the long term damage thanks to my incorrect decision making.

I urge everyone reading this if a neurologist tells you that they will reduce your medication because they see an improvement excellent and if they don’t not to beat yourself up about it.

Please don’t be foolish as I once was and take control of something you may not fully understand. The internet is an excellent source of information however doesn’t answer every question you may have. Disagree or not the medical profession do have experience and wouldn’t make the necessary changes if it wasn’t required. Take this advice if you want. I can’t make decisions for you.

I have been given the opportunity to reduce my meds however I have been seizure free for five years. As for some of you reading this who are regularly having attacks please be wise, sensible and remember that nothing is worth jeopardising your health for.

As for the remainder of the week…

Exercise- The Davina 15 workout DVD is a gem and I would urge anyone (if you’re reading from the UK) to purchase this. It’s bloody marvellous and each section is only 15 minutes! For everyone else outside of the UK Jillian Michaels is a close second.

Diet- The chocolate is still there however I’ve increased my protein and reduced my carbs. It’s safe to say saying I’m gonna remove chocolate only trains my brain to want it more therefore I’ll have a smidge a day.

Family- They keep cracking me up and making me smile as family’s should do.

Bathroom- Slowly but surely. Dusty but getting there.

To conclude today’s post. The finish line oh how it feels so far away at times.

If I could give you any advice it’d be this. Don’t make rash decisions. Be sensible and show you’re Epilepsy that you’re not quitting because you’re approaching matters the right way. You’re not being defeated by making choices that’ll benefit you you’re just showing yourself that you can cross that finish line in style with no regrets.

Can us warriors ever find peace with our Epilepsy?

Tonight consists of two quotes both received from close friends of mine.

I intend to look at them both closely and provide my interpretation albeit merging the two together perhaps. Here we go;

” The answer lies within ourselves. If we cannot find peace and happiness there it’s not going to come from the outside”- Tenzin Palmo

And

“A champion is someone who gets up even when he can’t”- Jack Dempsey.

Right now tonight’s quotes are one that pose great importance in my life both for completely different reasons.

I think when it comes to writing about ourselves as people it can either be uncomfortable for the person telling the story or it can be construed as being vain by the person reading it.

Either way whatever way you look at it the story has to be told in order for the individual to move on.

Whether you choose to tell your story or not the saying “it’s better out than in” in my case has now came into play.

By now you are all aware that at the age of 8 I was diagnosed with Epilepsy having frequent grand mal seizures with no aura. My life to a degree was put on a pedestal however the ones closest to me tried their utmost to allow me to live a life that was fulfilled, happy and one with as much potential as it could offer.

Whatever the worry my own support network have been there from the get go and has been on some levels something I have taken granted.

Usually in my blog I would concentrate on the one quote in which I would analyse the quote however this time I couldn’t stop at one quote two was required. Let me explain why.

As I’m reading the second quote the main word that strikes a cord with me is the word Warrior because I know that everyone inside of them besides the 65 million of us who have Epilepsy have to prepare themselves to be a warrior each day whether it be for themselves or their loved ones.

The word warrior is a one that we can associate with Epilepsy or should I say “The big fight”

It’s something soldiers would do in preparation for battle, citizens would become when trying to protect their homeland and people condition or not have to be every day in order to survive.

For over 20 years I have had a condition that I felt prevented me from having a life. I allowed myself for the majority of my life to bring my problems to the fore in which Epilepsy would be the one shouting the loudest.

The blame culture would come into effect every time an episode would arise and there I would be sitting questioning repeatedly as to where I stood with my Epilepsy and whether over time I would be able to put these fears to bed. The fear that Epilepsy would get the better of me.

I’m not going to lie compared to most my Epilepsy isn’t as severe.

Yes I have had a large quantity of shaking episodes of which to this day notably have left me upset, weak and disheartened because the fear of the unknown has become so great that I’m uncertain what my day will entail however I know deep down that there are so many people out there where their condition is far worse therefore I am eternally grateful to be as fortunate to have what I have.

When it comes to Epilepsy the word peace is a word that is extremely difficult to use in the same sentence as seizures, headaches, medication, worry and anxiety to name a few however the word peace can bring great solace at times where our worlds get bogged down with these frequent attacks.

To know that everytime you are a warrior because you refuse to be pushed down is such a positive thing. To know you’re getting up everytime you’re knocked down is hard but yet a phenomenal at the same time.

Basically you’re showing the world what you have to offer and although you’ve fought the good fight on more than one occasion your endurance and strength is second to none and under no circumstance can this be scrutinised because although you feel like the battle will never be won you’re showing yourself that you refuse to be defeated.

The other warriors who should come into this sentence are the family members, the friends, the colleagues, the online buddies who have been there throughout.

The people who have had to witness the ups and the downs, the support groups that voluntarily provide us with that stability, that hope and that reassurance that in times of need that we will be ok. Rest assured for everyone reading this who supports us you’re love doesn’t go un-noticed.

On Monday 6th January 2014 I found myself to have gone 5 years seizure free and thank you all for your tweets, retweets, favourites and kind words.

As I say the words seizure free it does make me think “Wow I wished for this my whole life” however I know what it’s like to go seizure free for four years and then all of a sudden bang they come back with a vengeance.

I therefore subconsciously try not to say the words out loud until the day is over out of fear it may curse me perhaps, that by saying things like that out loud that a seizure will return.

Does that sound silly to you all? Do you all do the same?

Completely forgetting it dawned on me the changes I’ve made within the past five years to try and help myself and trust me it hasn’t been easy.

Knowing that my seizures could return at any time and knowing that my shaking episodes have made their mark on my life now for nearly ten years is something that shows me that although seizure free my Epilepsy is still a significant part of my life every day.

People may question my judgement and advice due to me being seizure free however after twenty year’s worth of experience I know that my perception towards myself and my condition has altered somewhat over this timescale hence trying to raise awareness and support the people who have given me advice in order for me to live my life.

My world at times has been a journey that I would like to amend and if I could go back tell myself that life is too short to sit here worrying about everything and nothing. As much as I disagreed with my gran until recently her words was “This is life Saz and you have to get on with it” and you know what she’s right. I never wanted to admit it however she is. We cannot stand still, we have to move forward.

Epilepsy is something I cannot prevent because there was literally nothing I could do to prevent me from having this neurological condition therefore never under no circumstance blame yourself for what you have.

As the remainder of my week…

My week has consisted of three things. Work, Exercise and chilling out.

Exercise I’ve gone and bought Davina’s fit in 15 and by gosh is it wooping my arse! For crying out loud my entire body is hurting from my head to the tips of my toes however it doesn’t half feel great knowing I’m getting fit!

Food wise well.. Chocolate’s still there however my portion sizes are reducing and I’m eating more brown foods instead of the usual white stuff. Thumbs up to me on that one. There’s no point busting my bollocks exercising if I’m not eating right; Right?

Finally I’ve been shopping with my mam today and what a delight it has been. Usual girly catchups, coffee drinking, shopping and having a general laugh has been the number one priority today and everyday I’m thankful she’s in my life providing me with the love she always has done.

To conclude today’s post. You’re a warrior in fact in my eyes you’re the bees knees. For each and every one of you reading this I would like to thank you all personally for your contribution towards helping me but most importantly for providing epilepsy awareness to us all.

Epilepsy is a condition that can at times feel debilitating and can be very stressful indeed. Anxiety can be one of the biggest contributors to our condition therefore I know that by lessening this factor we may be able to alleviate the stress in order to focus on the life we want to live.

I don’t know you all however what I do know is that life is for living and although I have probably said that in every blog post I’ve written it is true. Do what you can and be who you want to be.

Can we really choose what we want?

“There is never a better measure of what a person is than what he does when he’s absolutely free to choose”- William B Bulger

Choice it’s a word that can cause controversy. The word choice is something that we tend to occasionally deviate from and from my own personal experience has chosen to ignore from time to time.

Over the years I’ve wondered whether the word blame and choice walk hand in hand with one another because from what I have seen in scenarios that I have not only been a part of but have contributed towards choice is what defines who you are and what can determine what direction your can life go down.

Now people may sit, read this and think to themselves that I shouldn’t have that opinion as I have only entered your life for a short time however what I do know is that when I reminisce about my own experiences I can see that the word choice is extremely important when deciding who you want to be, who you want to be associated with and how you as an individual can be the decider as to what makes you the happiest you can be at this very moment.

Growing up with Epilepsy was a condition that I believed to restrict me as a person and although the majority of this is true my seizures/shakes were and still are a burst of negative energy that whizzed through my body for a time of their choosing.

Although my episodes make me feel deflated for a significant amount of time after they are epileptic episodes nothing more. These episodes are a way of telling me that my body needs that time to regain focus and to relax.

I can appreciate that the majority of people reading this will have more than one seizure per week and question how many times per week they have to rest in order to have a well relaxed body that can in time become seizure free however I cannot be the one to answer that question because everyone is different.

From the age of 8 I’ve heard that the majority of my grand mal seizures (excluding one when I know alcohol didn’t help) have all been unexpected.

Nothing triggers them, stress could be deemed as the root cause however to this day that question remains unanswered. This is where the word acceptance comes in and although I prattle on using that word regularly that word has to be the pivotal word to my own personal recovery which to this day is still work in progress.

I’ll share a story with you that may merge this quote of the day with my life.

When I in my late teens I returned to neurology following the return of my grand mal seizures. Frightened at what my neurologist would conclude the fear of returning back to anti epileptic drugs and yet again feeling like a guinea pig being tested on made me become negative in myself.

Having an MRI scan and a separate EEG the following week my world felt like it had been turned upside down because not only had I returned from University without a degree but my seizures just so happened to be the icing on the cake I didn’t want to eat.

My body didn’t want to care. My mind and body weren’t in sync with one another. It wanted to shut down and tell the world to go fuck itself. Being told I would go onto Keppra and Lamotrogine were drugs I let go over my head because to be fair I wasn’t in the right frame of mind to listen. I probably came across as someone who didn’t want to care.

As far as I was concerned I was feeling well and truly sorry for myself shutting all doors to the people who loved me and losing that sense of inhibition my family had instilled into me from an early age. Agreeing and putting on a brave face become second nature and the fear that my seizures would have increased a second time round made me change my personality entirely behind closed doors.

One day after a seizure I had in my dad’s car I made the ultimate choice to not cave in and to accept that the choices I made to return home, to go into full time employment instead of perusing a degree I didn’t particularly want and excluding the medication aspect of it was my choice.

Whilst thinking I knew I had to embrace the fact that this wasn’t necessarily destiny I just needed to come to terms with the fact that I needed help and that everyone in some stage of their life needs help.

I decided that the only way forward would be to document my thoughts, go to my GP and seek that additional help. There was no way out of rut I was in and be honest that’s no way for a young adult to live. This was my choice and I could no longer blame the fact my Epilepsy had steered my goals off course. I was doing that of my own accord.

My heart wasn’t in the place I tried to persuade myself it was therefore why convince myself that everything in the garden was rosy when it wasn’t?

Before entering my first stage of therapy I poured my emotions into the ones I loved, the family who had been my rock since the day I was born and although decisions had been made that had once troubled me they were the people who have supported me throughout and have given me the incentive to portray myself in a way I never thought was possible.

The Epilepsy has made me worry over my lifetime but the fact I had allowing this to happen on a yearly basis was something I didn’t want anymore. Epilepsy is a condition I have. I keep saying this but it’s so true, although it is a part of me and although we don’t see eye to eye if Epilepsy wasn’t a part of my life then I don’t know who I’d be right now.

The choice to accept what I have is priceless and has taken a bloody long time to get there. It isn’t something I enjoy however the only time I will allow it to have it’s say is when an episode occurs after that then I have to be in control and make the right decisions for me.

I’m not saying for one second that you all have to agree however to sit down, look in the mirror and see that you are one of 65 million people who have this condition should make you see that you aren’t alone. We are all in the same boat (some more severe than others) however those people and the individuals who know and support someone with Epilepsy are the people who understand how we feel.

As for the remainder of my week.

My yankee candle jars have increased ten fold. After watching numerous Youtube videos my eyes and well truly opened on how to trim wicks, burn candles evenly, log candles alphabetically and all the rest of it. I’m having to now limit myself to 3 candles per month otherwise my husband will kill me because all the spare space my old clothing was have been replaced by the smells of lemons, clean cotton and rose petals.

Food wise. Well this battle is a one that I’m progressing with nicely. My chocolate intake has decreased (it’s getting there) and I’m not eating as much as I did over Christmas. After consuming 1.25kg of Galaxy milk chocolate in one sitting has to be not only a national record but a one that I cannot repeat again… well until Easter anyway.

Exercise well I’m merging my slim in 6 with my old Davina DVD’s chopping and changing my exercise regime to cardio, sculpt and resistance sessions. I’m seeing a slight difference so fingers crossed.

Apart from that all is well on the family front and we are all remaining positive for 2014.

To conclude today’s post. There are bound to be times where you are unable to control certain things in life however there are many times where you can. Life is about happiness and making the most of what you have right now. It’s not about waiting for someone else to make that decision for you or to tell you how you should live your life so you can blame them later on.

There’s a saying that I think is probably right “Appreciating the good days make the bad days more bearable”

Accepting that everyone has problems is something that we too need to understand and that although we have our own personal battles it’s highly likely that someone close to you is too thinking the same thing.

When it comes to Epilepsy blaming yourself won’t achieve anything it’ll just make you feel worse. On the other hand achieving the goals you set for yourself is a thing to be proud of therefore go live your life and be happy in the process.

The big push.

“Don’t be pushed by your problems be lead by your dreams” Ralph Waldo Emmerson.

When I say push I mean don’t go trying to impersonate giving birth or anything however come to think of it in some ways the word rebirth can come into the equation perhaps. To be reborn into the person you want to be. To be the person you’ve only ever longed to be.

This evening a friend of mine sent me the quote you have just read and it got me thinking.

Immediately I decided to get off my backside and write a few things that came into my mind. Whilst reading that quote I started to reminisce about times where Epilepsy was indeed the problem and how as an individual I allowed myself to be dominated by a condition that I felt always took centre stage.

Whilst writing this part of tonight’s post I can feel myself welling up at the prospect of feeling alone and knowing that the feeling I once felt when this did happen frightened the living daylights out of me and made me wonder whether my life could be normal.

For those of you who aren’t aware I have worked since I was sixteen years of age. Unfortunately some of you may not have experienced being in employment because of your condition however I was repeatedly told from an early age that nothing was ever handed to you on a plate (unless it was a gift of course) and that as much as people don’t want to admit money does in fact make the world go round.

Without a little financial stability the hope of me having that independence would be a speck in the distance and I would never have the feeling of standing on my own two feet.

After taking my parent’s advice I allowed myself to go into the big wide world of adult life working every available shift I could even to the detriment of my own health prior to going into full time employment.

Up to a certain point in my lifetime Epilepsy to me was a burden, it was a pain in the arse and it was something even to this day has had an impact on my day to day duties. Without rattling off some of the physical concerns my worry was that any dream that I had to be happy wouldn’t be reachable because my condition wouldn’t allow that to happen.

At the age of 21 I was at a place that I didn’t particularly like. Although I was financially stable, now debt free and acknowledging my condition there was this sense of emptiness in me like I was scared of the little accomplishments I set myself in life not being achieved.

The worry of losing everything around me, the anxiousness whenever my shakes reared their ugly head and the disappointment of repeatedly going into therapy was a daunting prospect and one I hoped I would eventually accept.

Today I was asked by a few of my close followers what my greatest fears were. Today it’s safe to say that my fears are heights, clowns and growing approximately 12 eyes on my face and not being able to see out of any. Should all three come together i.e a clown bordering a plane wanting to touch these eyes then it’s safe to say that I would quite literally shit myself however that’s a different story altogether.

Up until I was 21 my greatest fear was having a grande mal seizure in public, being mugged for the little pennies I had on me and that fear of being alone unconscious and not capable of gaining any control.

Within two years of me working full time and gaining that element of independence my fear was to become a reality and one misty morning in February 2006 I would be boarding a crammed bus en route to work. Looking at my baby G watch showing 8:13am and whilst listening to the Stereophonics The bartender and the thief I would listen to the very first lyric ” What you think about it he’s watching every word you say” and then ironically nothing was said.

The nothing would result in my watch showing 9:25am a half a dozen people looking at me scared out of their wits, an elderly woman reassuring me that I would be ok and two male paramedics asking for my name. As I sat there I realised what had just happened. My Ipod mini was well and truly scratched, my bag was wide open and within minutes I knew something was up.

After patting myself down sore around the arms and blood dripping from my mouth I knew there and then that I had a grand mal seizure in front of a crowded bus.

I knew that although people were staring, others worried about my welfare and the remainder not giving a toss I started to not feel embarrassed but quite overwhelmed by the fact that in times of uncertainty my fear was tested and I was oblivious to stop it because my brain had other ideas mapped out for me. The only solace I had was that I quite literally stopped traffic! Get in! Bet the drivers were fuming!

After being driven off to my local hospital, my parents as concerned as they could be and my head pounding I started to come to terms with the fact that this is just a part of me. It was the day where although shaken that my endurance would be tested and that life had to go on whether seizures were a part of it or not.

Whilst writing this blog post the same feelings have come back to me ever so slightly only this time I know that the person who felt that emotional distress was a young woman with all the worries she put onto herself. This time eight years later that person still has the occasional worry only now it’s about things that are worth worrying about.

The word dream is a one that many associate with sleep as only in times of rest do we manage to soak up those dreams and drift off to a land that is outside of the doubt we have within ourselves from time to time. Just because you have a condition shouldn’t prevent you from having the dreams you want.

As I’ve said on numerous occasions Epilepsy can restrict you to a degree however if your mind is as stress free as it can be, you heart and mind are in sync with one another and the knowing that although you may not succeed the first time you have given it a go is something that you should be immensely proud of yourself for.

On a lighter note..

The new year was it a success? Well I wouldn’t know because I fell asleep… Haha!!!

By 10pm I was in bed watching a DVD drifting off by 11 and not even batting my eye to watch the neighbours letting off the fireworks. Apart from spending time with friends having a chinwag and enjoying a bottle of fine wine a couple of days previous my days were made up of work, work and more work. As old as I may sound give me a pizza, a dvd and a bottle of wine anyday over a rather expensive knees up on the town!

As for Benny well he was totally oblivious as to what new year was. In fact he too was snoozing upstairs for approximately six hours without a care in the world as cats do!

The exercise is going well and as for the food slowly but surely that’s all I’m going to say. There’s too much chocolate in this house to not have a nibble from time to time.. Everything in moderation though!

To conclude today’s post. Cut to the chase and do what’s right for you. Don’t allow anyone to get in your way. Be sensible but don’t be one of these people who talks about action but never takes it. Maybe I’m not the right person to say what I’ve just said as I too have had problems where I’ve followed and not lead however maybe 2014 may be the year for me to accept what’s happening around me and to embrace every opportunity to be happy.

We have enough problems in our lives with health issues to have any more. Let’s try and make 2014 what it ought to be happy and successful. Let the mini achievements take centre stage instead of the Epilepsy and let’s see how far we go! 🙂