All hail purple…

” I know, I know times are changing. It’s time we reach out for something new. That means to you too, you say you wanna be a leader but you can’t seem to make up your mind. I think you better close it and let me guide you to the purple rain”- Prince.

I think you may have gathered by those lyrics that I was referring to Prince’s Purple Rain. I have to admit a lot of people I know aren’t partial to a bit of Prince however I do like some of his tunes and thought it would be apt to refer to this song considering it’s Purple day and all. I am an eighties child after all.

Right well.. Where do I start? Purple day. 26th March 2014. 65 million people of all ages. Support. Hope yet uncertainty. These words are ones that initially enter my mind when I think of Purple day. To spread Epilepsy awareness is one thing but to live a life with Epilepsy in it is another.

Whilst looking at the lyrics above I can’t help but wonder what it would be like to tackle Epilepsy alone. I’m fortunate that I have a support network around me to provide me with that element of certainty when an episode arises however I know there are many out there who don’t have that privilege and who to this day wonder whether support is readily available to them.

For those who have read Sazzle’s blog from the beginning will understand by now the complexities Epilepsy had and still to this day has on my life. It’s a condition where although currently seizure free rears it’s ugly head at the worst available moments can result in me having shaking episodes and medication side effects just to remind me that this condition is still a part of my life.

Throughout my mind conjures new questions only this time the way I perceive things is slightly different to past behaviours. The questions used to be why in times of weakness can we not all bypass these rocky road’s in order to give ourselves that chance in life.

Over a year ago I decided to write Sazzle’s blog to generate Epilepsy awareness in a way that I thought was necessary not only for myself but to see if anyone could associate with my concerns surrounding a condition that we all know is out of our control.

Fortunately I’ve had the honour of speaking with some truly marvellous people who in their own unique way choose to portray their own battle with Epilepsy and give the world an insight as to what life is like having this condition.

Ever since I was diagnosed I questioned why Epilepsy was in my life and what I did to deserve having this condition. At eight years old it’s hard to comprehend what Epilepsy is let alone trying to decipher where I slot into my condition however after numerous discussions with family, friends, support groups and the medical profession my condition turned into something I was gradually learning to understand.

To me Epilepsy was something I’d only ever known, to cast my mind back to pre Epilepsy feels like a distant memory. Let’s just say Epilepsy to me was like something you detest like possibly getting out of bed on a Monday morning knowing fine well you have to go to work to pay the bills and to keep a roof over your family’s head.

I disliked Epilepsy however knew that I had to attempt to face head on. In order to gain that independence the word blame had to be removed from my vocabulary and that with time Epilepsy shouldn’t be frowned upon as an unnecessary evil but a necessary one as it wasn’t going anywhere in a hurry.

To me the big question has always been what would my life be without Epilepsy in it and ultimately would it be any better than it is now?

As the years passed seizures would come, shaky episodes years after and the constant battle of how I would get through a day without having one of those two things was something that was constantly on my mind.

To programme your mind takes time and after researching the psychological aspect I’ve grown to understand that I allowed my condition to dominate my life for far too long hiding behind it at every available opportunity and blaming Epilepsy for the wrong doings in my life.

As I approach my 21st year of having this condition I can see what Prince was referring to in Purple rain.

My interpretation of his lyrics was that although he was referring to a lover he knew that times were changing and that indecisiveness can take over a bit like our minds can when the word Epilepsy is used.

To lose that element of control can be debilitating and can result in you feeling like you’re losing focus hence spiralling into further problems that make you feel paranoid and worthless however this can in time be altered.

I’m no expert when it comes to every seizure out there, every medication side effect or every electrical device on the market to assist others with understanding their brain activity however what I do know is that on purple day we can provide others with support. It’s about having the right frame of mind and knowing that getting back up so outweighs the staying down.

Life is not about excuses. I know that now. It’s about taking ownership for yourself and instead of thinking your hitting your head off a brick wall remembering that you can in time plough through that wall with your positive attitude towards your condition. That may feel like an unachievable task however anything is possible.

We can let the world know that purple is the colour for Epilepsy and that by wearing something as simple as a purple top, a purple lipstick or wearing what my friends would call “The Saz nail” i.e your ring finger with a dollop of purple polish on it is enough to show how important Epilepsy means to you. Whether it be you personally or someone you know that endures Epilepsy you are giving the world something to think about.

Next time someone walks down the street and has a seizure remember that the majority of individuals convulsing are unaware of their surroundings and by something as small as putting them in the recovery position and calling emergency services or post seizure advising them that all will be well means more to that person than you’ll ever know. I know it did to me.

Instead of writing about the remainder of my week I will conclude this post on this.

Life is a precious thing and a one with the right people around you can be a blessing. Epilepsy can be a condition that can test your patience, your ability and your emotions however what we should all understand is that with we aren’t alone. Just because you have regular seizures doesn’t make you any less of a fighter.

You are who you are and you have Epilepsy. As I approach my 200th post (Yeah I know I’ve done that many sheesh!) I know that acceptance is key and that until we accept what we have and eliminate the worry then this battle will only ever be that.. a battle.

Before I toddle off to make my lunch I wanted to say a massive thank you to you all for being my support network in particular four women who have shown me that Purple is our colour.

This weekend gone my friends Tiffany and Whitney from Epilepsy support groups The Ten network and Changing Focus did a sponsored walk around Washington D.C to spread awareness and to carry the flag for Epilepsy worldwide. Let’s not only give them a round of applause but thank them for walking for us.

Support is everything therefore wear purple, offer information but most importantly just be you.

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The sheep vs the lion. Where does Epilepsy fall in this choice?

“It’s better to be a lion for a day than a sheep all your life”- Sister Elizabeth Kenny.

What a strange quote but a one that didn’t half grab my attention. A quote that immediately made me wonder whether I want to follow in the direction of others or whether I want to put my own stamp on life. Whatever the choice it’s your choice and yours alone. No one can make that decision for you.

The ultimate question is where does Epilepsy rank when making your choice? Well let’s just put it bluntly it doesn’t have to. This question is a one that doesn’t just apply to people with Epilepsy it applies to all walks of life and you know what whatever decision you make, there’s no wrong answer.

I decided today to write a post; a one that explains exactly what my decision would be and whether all of you can relate to this decision. Give me your feedback if you want.

When I was younger I never knew what life had in store in fact I was like everyone else trying to find her feet and juggle a condition along the way. For years I was looking for an answer to a question that would repeatedly enter my head that being “Why me?”

Those two words would frequently come and would result in me kicking myself in the arse for no apparent reason and wondering why Epilepsy had to grace my silver screen. It was a condition I didn’t want but more importantly it was a condition I didn’t fully understand.

Growing up I aspired to be something I wasn’t. I’m now at a stage in life where I can say that and I’m not ashamed to say it. I wanted to be everything to everyone and you know what? You can’t please everyone all of the time. Sometimes you’re damned if you do and you’re damned if you don’t.

As I’ve grown older life wouldn’t be life if it didn’t have it’s problems. Whether I suffered from Epilepsy or not the question doesn’t lie with whether my condition prevented me from being successful or whether it was me that did that of my own accord.

My interpretation of the sheep vs the lion is not necessarily the fact that being a sheep is you joining the herd and marching to everyone else’s tune but to me my version of the sheep is the person I thought I had to be to accommodate my Epilepsy. It’s safe to say that my condition had it’s moments that would result in me feeling blue however my attitude didn’t help.

It was about me worrying so much that it became detrimental to my stronger days, the days where I should have been living life and not worrying about it.

To be a lion for a day doesn’t mean that you have the right to lord it over everyone else and burden them with your problems however to be a lion means that you’re taking ownership of your own life and by extension are accepting both the accomplishments and the pitfalls that life has to offer, this includes the condition that you have.

Without putting a dampener on the whole situation my mindset then was all to pot and I wasn’t thinking clearly.
I would whinge about my condition and put obstacles in my way.

Instead of realising what life had to offer and looking at what was around me I was standing in a place that I didn’t want to accept. Although I had Epilepsy and wasn’t afraid to discuss it amongst others I was the one who couldn’t accept my condition therefore I was the one who couldn’t quite come to terms with the fact that I could be the lion if I wanted to. There had to be a time where you let go.

Many may question my theory and say “Saz it’s not as easy as it looks” and I can sympathise fully. I do however believe that in time everyone can get there if they want to. It’s about realising your potential, not taking things for granted, bring you and not someone others want you to be along with eliminating unnecessary worry from your life and embracing the things around you.

You’re bound to feel different from others as you’re battling a condition out of your control however if you look at what I’ve just written from a different perspective everyone’s fighting a battle sometimes you just don’t see it.

Maybe their questioning is exactly the same as yours, that being “Can I be the lion, or am I destined to be a sheep my entire life?” Whatever you feel, people will come across the same barriers therefore by raising awareness in our work is so important.

As for the remainder of my week…

Work, work and more work.

Eating wise I am going to be honest and say that I have succumbed to chocolate. My eating pattern has resulted in me eating better and apart from the rather bland chips I had at work on Friday the healthy eating is going well.

Exercise. The aim is to do a minimum of 4 times per week. I lost 1lb on Thursday’s weigh in so I was rather chuffed! The aim is not to be scrawny but to ensure my skinny jeans remain that way and actually flatter my arse instead of making it look like a 30 bob cabbage!

Finally I was out with friends on Thursday and by gosh what a night we had. After consuming a rather delicious meal (accompanied with a couple of glasses of pinot gricio) I went to the theatre to see Fame the musical and had a delightful night.

After watching approximately 20 dancers on stage strutting their stuff I decided that enough was enough and that no excuses are to prevent me from having a toned bod! No I’m no theatrical performer however I will be happier in my skinny jeans.. that is definitely a plan!

To conclude today’s post. Your choices are your choices no one can make those for you. You can receive unlimited advice however you have to make the final decision, You have to conclude your own story. As for being a sheep or a lion you can form your own interpretation of that question and decide whether Epilepsy is factored into your answer.

For me I have Epilepsy therefore although I have to take my condition into account Epilepsy is something that shouldn’t define you it should be something that makes you see how capable you can be and how Epilepsy is making you stronger each day. Never underestimate the lion in you because it’s there somewhere.

No more drama.

“So tired, tired of all this drama, no more, no more. I wanna be free”- Mary J Blige.

Both the title and quote may confirm the following, drama is without doubt one the most useless stresses that life has to offer.

The quote above is from Mary J Blige’s famous song No More Drama and is up there with some of my favourite songs to release unnecessary tension when my body’s at an all time low.

The purpose of today’s post is to emphasise how important your welfare is and how when you suffer from any condition you have to make your health a priority and erase that negativity from your life so you can focus on what matters.

Nowadays we live in a world where social media has a lot to answer for. Social media pretty much rules the roost. Everyone has access to the internet whether that be on a tablet, ipad, iphone, mobile phone or some form of ebook device. Social media can dominate people’s lives to the detriment of everything else around them. I mean come on can you remember before social media existed? If so I’m impressed. Only joking.

Actually joking aside I feel that the majority of drama can be caused online and to be honest it’s not required. In fact it’s rather sad. It’s something a child would do.

I decided to write Sazzle’s blog to promote Epilepsy awareness and in doing so air my dirty laundry to anyone wanting to listen. It was about erasing worries from my mind about my condition and to let others see that they aren’t alone.

It was me giving my interpretation of the anxieties I felt Epilepsy brought into my life and to give you the opportunity to embrace what you have and to understand that although Epilepsy is a condition we wouldn’t particularly ask for we have if we had the chance therefore we have to make do and mend.

As I constantly say there’s always someone worse off than you. Although what I’ve just said may have no effect on your own life it’s so true. Disagree if you will I don’t mind.

Over the course of the past week I’ve watched my thought pattern fluctuate to accommodate tiredness. My Epilepsy has been fine however medication side effects can be a right pain in the arse and I’ve felt that this week entries in my Epilepsy diary has escalated because I’ve felt rather demotivated. I’ve had to even push past the tired barrier to get my workouts in.

Fortunately the shakes have remained at bay and it has given me the opportunity to focus my attention on something that makes me smile that being my family, close friendships, to take life at face value and to embrace the fact that we all aren’t the same.

It’s about appreciating the people who choose to put a stamp on your life for all the right reasons and to give you views on how drama can evolve from something petty into something far greater.

I’m not going to go down the path of my diagnosis in this post as by now you already know what this is i.e. I was a young naïve child who thought that I was the only child in the world to have this condition and that this would prevent me from making friendships and living the life I thought I wanted. How wrong was I to think that way?

Not beating about the bush but that was the way I thought then and rightly so, I was a child not knowing whether I was coming or going one minute to the next however as my parents would say “That’s kids for you”

When I think long and hard about it my parents never restricted me from having a life, in fact they encouraged me to have a childhood of my choosing and whilst taking into account my condition wanted me to go at my own pace.
A pace to which I would be comfortable and they would be capable of understanding. To this day that same backing makes me want more for myself. It’s not solely about making my parents proud, it’s about making myself proud.

What I’ve identified through my lifetime is that Epilepsy is not a disease it’s a condition. It’s a condition that towards the end of this month 65 million people will be in unison with and should they choose to do so have their say on their own personal journey with Epilepsy and share this with the Epilepsy community.

Whether it be wearing a purple blouse, purple nail polish, fundraising or re-tweeting valuable Epilepsy information it all helps to raise awareness and to show your support.

When I think of the word drama I tend to clam up and get rather pissed off.

Don’t get me wrong everyone (including myself) likes the odd gossip to make the day go by that bit quicker however there comes a point where childish behaviour shouldn’t take centre stage. When you delve deeper usually people put the word drama and stress into the same scenario. Let’s just say if my gran (bearing in mind she’s 83 years old) was sitting right now she would say;

“Stress is over-rated, when you have a bad day you pick yourself up, dust yourself off and get on with it because that’s life. You’re fortunate you didn’t live through the war” and you know what as much as I don’t want to admit she’s right. As soon as she brings up “the war” then I have no comeback.

Stress is a well known condition that will effect people throughout their lifetime however there’s a fine line between being stressed and just having a shitty day.

The following lines from Mary J Blige’s classic basically sums up the way I used to be and how I thought stress should have been:

“Or maybe I like the stress, cause I was young and restless, but that was long ago, I don’t wanna cry no more”

Me I thought growing up was a stressful situation. I blamed my Epilepsy in fact I think I blamed everything and you know what that wasn’t stress at all. I didn’t know whether it was the meds but I was crying at the drop of a hat.

That was me then, not accepting that shit happens and although I didn’t particularly like certain things in my life they were happening and I had to find a way of channelling that anger into something else. Looking back I think I’ve blamed everything from me being bullied to my parents separation however the more I think about it now as an adult the more I look back and think at how childish I was behaving.

I’m now bordering on my 29th birthday and I can officially say this way of thinking gets you nowhere.

As a youngster I was quite a needy child who never liked the idea of being left out. I think it’s only over the past couple of years that instead of just joining a crowd I’ve managed to say “Sod it I’ll be who I want to be and if you wanna slag me off then go ahead because I really don’t give a shit, if you’re slagging me off then you’re leaving someone else alone”

I think what I’m trying to say is that when it comes to Epilepsy we all have something in common whether that be the condition effecting you personally or whether you’re the individual who is responsible for someone with Epilepsy. Whatever the scenario drama shouldn’t be a priority in anyone’s life.

In fact it doesn’t help with the condition that person has. I’d like to think that now I’m in a position to say that because I’ve been at the forefront of drama and possibly the one who put drama onto herself for no particular reason.

Instead of focusing on what I wanted I made a mountain out of a molehill for no reason and I can say that it got me nowhere. That’s not what life’s all about. It’s about changing for the better, accepting what you want from life and trying your utmost to grab it with both hands.

As for the remainder of my week..

Apart from the pizza on Saturday and the shortbread biscuits on Thursday then I’m doing rather well. If you haven’t heard of them already I’m currently watching Youtube videos about fitness and nutrition to which I’m pleasantly surprised.

The blokes I’m watching at the moment are called The Lean Machines and not only are they catching on the eye they have some remarkable videos on fitness, nutrition and just general no go areas when it comes to the gym. Let’s just say they’re the whole package and after doing their workouts for two weeks I’m seeing a difference.

Yesterday consisted of spending time with my dad, shouting at the football and watching my bets go tits up. Not only that but I did have one too many to drink that resulted in the pizza I had earlier. My excuse is that it was a Saturday and I had a busy week…

To conclude today’s post. Ignore drama and leave it where it ought to be. Wherever you found it.

Jealousy is one of the contributory factors to drama as is past insecurities and instability. We all have our moments however my word of advice is that if you want to be happy leave drama well alone. Focus on what makes you smile and as for the rest well it’s history.

Note to one’s self.

“If you could write a note to your younger self, what would you say in only two words?”- Anon.

After a hectic week running around like a blue arsed fly I decided that it was about time that I put some time aside to get this morning’s blog post written. Lately other thing’s have taken priority but what with Purple day approaching this month I decided that I would utilise my time and get back to what I know.

I’ve chosen the quote above as it got me thinking. Popping up onto my twitter timeline this morning I started wondering what I would say to my younger self and how the majority of us somewhere in our lives have the best intentions however the things we want for ourselves don’t always go according to plan.

When I was diagnosed I remember sitting in my room for the best part of 10 years willing to grow out my Epilepsy because I thought it was my Epilepsy that had caused the insecurities in my life.

Unfortunately Epilepsy wasn’t even part to blame because those insecurities were possibly formed well before I was diagnosed. Who’s to say that it was the Epilepsy that caused this? Maybe it’s because all my life that’s what I’ve believed until now.

The latest post written focusing on a father’s perspective was a dossier that highlighted my dad’s thoughts on Epilepsy and how as a parent you have to set aside your own concerns to adhere to your child’s. After receiving excellent feedback on that particular post I decided that if my dad was breaking boundaries for his child then surely I could break boundaries to help myself.

A couple of questions for you all. Setting Epilepsy aside but have you ever looked in the mirror and not liked what you saw? Has there ever been an occasion where you’ve looked in the same mirror and given yourself a good talking to trying to fuel some sort of boost into your life to kick start your day?

Well I’ve done that on many occasion particularly after I had a shaking episode and was feeling ever so sorry for myself. I think it’s safe to say that having moments like this makes you human and makes you see that you aren’t invincible.

Getting back to today’s quote. If you could write that note to yourself what would you say? Would that note require more than two words? What words define you or better still what words DO YOU WANT to define you?

Unfortunately I cannot speak for you all however on a personal level maybe the words I would say to myself is Be accepting, be happy or better still be real because being real is what differentiates you from everyone else. Being real to yourself and accepting the low points in life is something that makes you the person you are.

People who don’t do this could be perceived as being artificial because their life will solely consist of trying to convince themselves that down days shouldn’t happen to them. When you have a condition unfortunately the down days come and there are times where the questions shortly follow with no answers to support the why’s, how’s and what for’s.

Let’s just say the words I would use for myself at nine years old was to “stop fitting”, at seventeen was “why me”, at twenty one was “require change”, at twenty four was “be happy” and now at twenty eight my two words is “getting there”. To say those words out loud can be a pivotal thing in anyone’s life.

Looking at these words as I changed from a young girl into a young woman I should have possibly told myself that having a seizure shouldn’t be frowned upon as being the be all and end all. Epilepsy shouldn’t be my be all and end all.

Over the years I’ve felt that same way wondering why a three minute episode can rule my life. Why can’t we not turn round the negatives and make them into a positive.

Many reading this may question how this is possible however to appreciate your stronger days should be your strength. Maybe putting the emphasis on those stronger days can make the harder days that bit easier.

I am extremely fortunate to speak to you all on a regular basis seeing how Epilepsy has made a stamp on your life and how we all have each other’s backs. Within the past year I’ve been lucky to have been given the education from you all on a condition that I allowed to dominate my life for so long.

Although the Epilepsy is still there I know that the notes we once felt we were in place for ourselves in life can be re-written and that our thought pattern changes as we get older. We have room to grow and the time to evolve.

As for the remainder of the week..

Well apart from having sweets and boost chocolate bar on Friday at work then I can officially say that I am getting into the swing of eating healthier, downsizing portions and regularly exercising.

It’s safe to say that it’s been a struggle with the odd medication side effect rearing it’s ugly head preventing me from achieving my daily goal. I’ve lost 3lbs and although I’m not massive I’m feeling a difference in myself.

Instead of beating myself up I’ve decided to take each day as it comes and to tell one’s self that a goal cannot be achieved overnight and as ironic as this sounds it can take a bloody long time to get there.

Exercise well I think I’ve pretty much covered that. Thursday consisted of me walking into work like a duck because my thighs were pulsating off my legs, bums and tums workout. My arse had gone numb and as for my arms well they felt like I’d just been carrying weights all day. Let’s just say it was a good sore!

Family wise well they’re as chipper as ever. Benny (you should know who he is by now but if you don’t he’s a very spoilt cat of mine that gets away with murder) is currently eating me out of house and home and trying to tear my living room wallpaper out of frustration because the female cat along the road is pestering him. What a boy!
Shame my bank balance is going to have to take the hit to resolve this issue because he cannot be bothered to stand up for himself…

Event’s wise I decided to become a “jetsetter” yesterday and ventured to Leeds with my other half for a bit (well a lot) of retail therapy. Returning home with two yankee candles, a rather delightful yellow blazer from Zara, three skincare items from Liz Earle, a pair of jeans and a black long sleeve t-shirt were the purchases of the day!That and going to Bagel Nash for a smoked salmon and low fat crème cheese bagel… Mmmmm….. bagels!

Hey if they’re a bargain please purchase.. I can assure you they were essentials each and every one of them!

Anyhow to conclude today’s post. See if you can describe yourself in two words. Are those words nice person, happy person or change required.

Whatever words you use to describe yourself know in yourself that you are capable of giving it your all. You’re doing that every day by coping with a condition that is out of your control. I keep saying this but be the person you want to be. If you can do that.. Well the world’s your oyster.