Let’s do this..

“You have to get up every morning and tell yourself I can do this”- Anon.

Too true. This is the thing.

We all have those days where we feel demotivated like we cannot be arsed to get out of bed to face the day. There’s that feeling where you want to throw the duvet over your head and get up when you decide to get up however unfortunately time waits for no man, woman or child therefore we have to find that oomph from somewhere to face the day and beat the mind-set.

Lately I have been extremely busy hence the not blogging. Whether it be work, house renovations, birthdays or time spent with loved ones my time has been taken up in what we would all know as life.

Although it’s been hectic and the majority of it has been perfectly fine there’s this element of me that feels like I’ve lost the motivation. Apart from my exercise regime (that I’ll discuss later on) my mind’s been all over the shop and a little word called “insecurity” on occasion rears it’s head particularly when I’m shaking.

Just under two weeks ago I had a shaking episode  while at home watching a film with my husband. It was like there was two of me, another personality telling me to quit and the stronger side of me forcing me to remain strong and to realise that in time the shake will pass.

When it comes to my shaking episodes it becomes the norm when they’re happening but in the grand scheme of things it’s not as simple as that, it doesn’t actually get any easier, it still knocks the wind out of your sails and you’re still battling that fear of what will happen next. It’s not as bad as it used to be but I know it’s still there.

To me there’s been many occasion where I’ve just wanted to say “Fuck this shit for a laugh I’m done, I cannot be bothered with this anymore” however I know this won’t achieve anything.

Over the years I have always wondered why people come out with the saying “I can’t do this” or “I’m this way because my mother, father, auntie, uncle, sister, brother whatever was this way therefore I’m the same as them” however this couldn’t be farther from the truth. In fact I was one of those people until I went to cognitive behavioural therapy and could see that I didn’t have to think this way. If life was so bad then only I could change it.

I could utilise the assistance in front of me whether it be talking to relatives or receiving advice from an Epilepsy support group however when all’s said and done this change had to come from me because it was my life no one else’s and the same rules apply with you.

Obviously we develop similarities from the ones we love whether it be the same fashion sense, music, traits as such (In my case inheriting a little OCD from my gran when it comes to organisation) however you are you.

You don’t have to be anyone else , just be yourself because it is by far the most attractive thing to be you. It may not feel that way at times because of your condition however you can do this if you want to. You can change if you deem it necessary and you can grow as much as you feel is right for you.

Growing up with Epilepsy can cause a mixture of emotions.

Many may disagree however it can feel at times like Epilepsy is a hindrance because you can never quite anticipate how your day’s going to go, whether you’re going to have to rest when you’re having such a marvellous time or whether you have to cancel plans to accommodate a condition out of your control. It can feel like the whole world at times is caving in and you have literally no say as to how you’re supposed to feel or behave for that matter.

It can be tiring both physically and emotionally and can feel like you want to shut the door and leave Epilepsy outside.

This was always a struggle for me because to me there was an element of control with every aspect of my life excluding my Epilepsy.

Thinking back I could control who entered my life, who left it and my will to persevere however it could all be knocked down with a three minute grande mal seizure or a two hour shaking episode that would alter my personality and change my opinion on life at the drop of a hat. Let’s just say it was a bag of emotions and I never quite knew how to handle what choice I was to select from that bag.

Next week I will be 29 years of age and as I approach the end of my twenties I think to myself of the obstacles I’ve had to face since being diagnosed 21 years ago. I delve into the connection my parents had with my condition and the feeling of the ones around me who have chosen to make me feel like Saz and not just the girl who just so happens to have Epilepsy.

It then gets me thinking about the millions of people across the world with the same condition again wondering how to cope with their condition and what they can do to remain upbeat and to life their life to their full potential.

The admiration I have for each and every one of you with Epilepsy will remain at the peak of me writing Sazzle’s blog and makes me want to channel my feelings towards Epilepsy to raise awareness and make you see that you can do this.

I think my perception of Epilepsy has changed somewhat over the years.

I had always been a worrier and to a degree still have the odd moment where my mind will drift resulting in me wondering what I’ve done wrong and if I could have done anything differently to prevent certain scenarios from happening. I’m hoping in time this feeling will diminish however I’m not going to worry about it because that is just who I am; doing what I can to be a better person but ultimately a happier person.

In the next breath as I reach this new age I think to myself that you deserve to be respected, your opinions are your own and you have your own life to lead whether you have Epilepsy or not. You deserve to be happy and you deserve to have the people around you that are going to uplift you not bring you down.

Since childhood my close family members would repeatedly say that I couldn’t please everybody all of the time because we all have different personalities, characteristics and what pleases one won’t necessarily please another. There comes a stage where stigma whether it be towards Epilepsy or not can still in today’s society be rife because people don’t understand what you go through however on the flip side we don’t know what they go through either.

On a lighter note..

The healthy eating is getting there. Obviously chocolate has made an appearance however I have been pushing myself with Shaun T’s T25.

I’m on week 4 day 3 and putting it bluntly it’s fucking killing me!

I have flat feet and either my body isn’t used to the push I’m giving it or I’m wearing the wrong trainers. I desperately need some new trainers and I truly hope that if I continue to drop as many hints as I’m currently doing with the family that they’ll take pity on my flat feet and bless me with some Nike Trainers.. specifically for plyometric training. Woo hoo!

For those who aren’t aware I have what my cousin would call Syjoe bob feet. If you watch The Simpsons you’ll know who this character is, if not google him. One hint.. he’s got crazy hair a bit like me of a morning.

They are without doubt the most unattractive thing and can cause me quite a bit of pain. The only good thing about my feet is come summer time I can put a bit of sparkly polish on my toes to bling them up a bit and to disguise the fact that I can spread all five toes like a duck. They’re not pretty but I suppose you’ve got to make the best with what you’ve got. Oh dear.

To conclude today’s post. Don’t beat yourself up. If you’ve had a bad day one day tell yourself that this won’t continue. You have a life to lead, people who love you for you. Everybody can be a force to be reckoned with however do things in your time, at your speed and realise that you can be happy. It may not feel that way now but trust me it will.

 

 

 

 

 

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A true honour..

infographic-JL (1) “TEAM- Together everyone achieves more”- Anon

Do we have to go it alone? Of course not.

Do we sometimes feel like we cannot turn to anyone? Sometimes.

Should we feel that way? No you don’t have to feel that way because when you unite as a team it’s harder to knock you down because you’re all standing for the same cause, for the same hope, for the same realisation.

Lately I’ve been thinking about various topics one’s that mean great importance however the questions I’ve just asked above don’t need to be answered in a disappointing manner. In fact no one should ever feel like they’re alone because you aren’t alone.

To me I’m a bit of both sort of girl i.e. I like to have my own space to have that me time ranging from watching films to just listening to music that makes me smile and uplifts my mood. On the flip side I’m all for team work communication particularly where we can all come together whatever the scenario and just be ourselves, to get a job done and know we have that success that only team work can bring.

There’s occasionally that feeling when you’ve had an epileptic episode that you want to be on your own and that is understandable.

There are moments where you’re afraid to be alone out of worry that another seizure will take hold shortly after resulting in further anguish and concern. This in itself is a daunting prospect.

For many who use the words “Well you’ve got nothing to worry about” cannot truly see at times how difficult having any condition can be and depending upon the attitude can be hard to accept.

Nowadays I look and think that people have our best interests at heart therefore instead of biting their head off and throw a tirade of huffing and whinging thank the person in question for their well wishes and continue as normal. I have my moments still, I’m only human but I’m getting there.

A piece of news that to me was an achievement in itself and a massive woooo for Sazzle’s blog. Some may say it’s nothing to me it felt like I was on cloud nine.

Last week I received an email from a charity who in times of need has made such an impact on my life. They had confirmed that they had seen my blog and enjoyed reading it. To receive any form of positive feedback is bloody marvellous in itself however to be approached by a charity as significant as this one made me feel extremely happy. In fact it made me want to continue writing.

The charity in question was Young Epilepsy a UK based charity that specialise in promoting Epilepsy awareness, offering education, day to residential services and general advice on Epilepsy. It’s goal is to work toward better futures for young lives with Epilepsy. Their website makes me proud to be British and truly offers some vital statistics about understanding our condition. It’s one step closer to accepting what we have.

To be given the honour to write something for them made me jump at first because as a youngster I too was one of the children out there that needed someone outside of the box, to give me the help I truly needed and they did for me. I would urge anyone reading if they are concerned about their condition in any way, shape or form to do the same.

To write a post for them towards Epilepsy awareness week and to promote Epilepsy awareness through not only the image above but to my followers who have educated me and been my lifeline in times of need.

As I grow older it’s glaringly obvious to me that one of the greatest achievements in life is happiness and accepting oneself.

Over  the past 21 years it has been a struggle, I would by lying to say it hadn’t been.

As you are all aware by now Epilepsy is a condition that nowadays effects 65 million people and has been renowned in my eyes as being the silent condition

For people who were oblivious as to who I was the only time they even realised there was “something the matter with me” was when I would have a seizure, a shaking episode or when I would go extremely silent.

To me coping with Epilepsy was something that effected my life in more ways than one.

My personality to a degree became effected and there I was questioning whether I would always have to depend solely on me or whether I could eventually let my guard down and be part of a team again.

To not feel like I was the odd one out and to know that I had given it my all condition or not.

There was a period in my life where although Epilepsy was still a major part of my life it had remained dormant.

The medication was to stop in my early teens along with the seizures and for a moment there felt like there was normality in my life like I was in the process of wanting to be free, free of epilepsy and just given the opportunity to be a teenager.

Four years passed seizure free, relatively no problems however in the back of my mind there was this fear that would rear it’s ugly head and there was many a moment where I would have to refrain from drifting back into old patterns such as negativity and doubt.

Instead of appreciating the seizure free times there was this person who wouldn’t allow Epilepsy to leave her and who allowed for a significant amount of time for Epilepsy to dominate her life along with other past times that by now you’re all aware of.

There came a stage as I reared my twenties where I thought to myself that Epilepsy was a part of me however it was never going to be solely what I was known for. I didn’t want to be renowned as being the girl who had the odd convulsion, who was repeatedly taken home because the shakes had taken hold or the sickly child that at the age I am now can laugh at with my nearest and dearest. I wanted to be more than a word, a statistic, I just wanted to be Saz.

As I reminisce about my personal journey with Epilepsy it gets me thinking about how others perceive Epilepsy, how Epilepsy can be stigmatised and how people who aren’t fully aware of what our condition is can be very misguided and can misread the tell tale signs therefore raising awareness is crucial to not only our welfare but the welfare of others.

Whether you be a child at school, college, university or breaking free into what my parent’s would call “the big wide world” I can sympathise with the apprehension Epilepsy can bring out of fear that you will not be perceived as being normal however this couldn’t be any farther from the truth.

You are within yourself a fighter, a warrior but most importantly a survivor because everyday you’re proving to not only yourself but the loved ones who choose to provide that support to you that you are marching to your tune and not necessarily the tune of others.

You’re proving that Epilepsy won’t define you and that you like I was many moons ago can just be you and solely be the person with Epilepsy.

Below is some information that Young Epilepsy has given me that when I read it made me have butterflies inside. To think that Epilepsy awareness slowly but surely is starting to become a part of people’s conversations.

We’ve got a long way to go yet to achieve that further feeling of hope however to know that we are getting there should be an achievement in itself. Before I give you this information I would urge you to go and check out the Young Epilepsy website and see the marvellous things that they do.

Unfortunately for those who know me well will know I’m not the most technical (for crying out loud it took me over an hour to get this image at the top of my screen so I’m hoping this works) therefore please go to http://www.youngepilepsy.org.uk for further information. You never know by clicking this website could help you or the ones you love therefore give them that chance and have a browse.

When I read the following I was thinking “What” combine my condition with my love of Fashion and it makes my heart melt. Shame I couldn’t get 50% off!! Just kidding!

As I read it made me smile and I hope it does with you too.

Charities Young Epilepsy and Epilepsy Society have partnered up with British fashion retailer River Island during Epilepsy awareness week (18-24 May) to help raise epilepsy awareness of this widespread condition by launching the campaign “Everyone knows someone”

The “Everyone knows someone” campaign is designed to get everyone talking about this hidden condition.

The following infographic (the image shown at the start of my blog post) explains a little more about Epilepsy and how common it actually is.

To conclude today’s post. Epilepsy is a bugger at times I know however never give up.

If I was to offer a little bit of advice and take it as you will. As we approach awareness week we know that there are moments where we want to throw in the towel however knowing you’re not giving up is more of a success.

Never underestimate yourself, be happy with who you are,  embrace what life has to offer, try to be accepting of the condition that challenges you but makes you see that you only have one life therefore grasp it with both hands and show the world what you’re made of.

You know you can so believe in you.

A mother’s work is never done..

“Most mothers are instinctive philosophers”- Harriet Bercher Stowe.

I thought it would be rather apt to write a post about something that has entered my head recently. As I’ve been online the main topic of conversation is Mother’s day and what people online have been doing to share this special day with their mothers.

Over the past sixteen months I’ve written about an array of topics ranging from concerns to worries about my recent feelings but ultimately Epilepsy is the main subject that unites us all.

In March it was Mothers day here in the UK and yesterday I was aware that the majority of the world were celebrating their memories of the women that put their stamp on their life that being their mother.

Whether you call her mom, mam, mum, mother, ma or hey woman get yourself over here (something I’d get my head ripped off for if I did that) mothers have what I call the other sense.

In my case my mam is without doubt my best friend or better still the older me. She knows me. She can tell if I’m pissed off because of my facial expression and if I’m upset by gosh she’s the first person on a telephone who’ll pick up on it before saying “Sarah what’s the matter you’ve got something to tell me”

Growing up my mam and I haven’t always seen eye to eye.

We’ve had disagreements, arguments, walking out on occasion because my room hasn’t been tidied, the good old saying of “You don’t understand me mam” before jumping on a bus to my grans and the list is endless however when all’s said and done the saying I dread to say and she’ll laugh when she reads this is that usually… Mothers know best. You may think I’m wrong but it’s taken me nearly 29 years to admit it.

There’s the saying that you’ll always love your family but you don’t have to like them and growing up with my mam who although received support from my father became a single mother at the age of 26. Living in the same home as my mam who felt like she gave me the clothes from her back was the woman you would go to with everything.

She was the one who’d work full time hours to keep a roof over our heads and was there to offer her support when I needed her the most.

Whatever the problem whether it be big or small she was the woman you’d gravitate towards and although we’d clash heads a fair few times she was the one I’d pour my heart out to. To this day my mam is still the person I’d phone for a giggle, a bit of advice or just a chat about a favourite TV show while we’re both munching chocolate down the end of the line.

My mam was the one who between us gave me the strength to conquer my fears since I was diagnosed.

At 8 years old my mam was to face the biggest challenge in her lifetime and that is to be informed that her daughter had Epilepsy. That her daughter at such a young age has just had six grande mal seizures one after the other, was paralysed down her left hand side and could have Epilepsy for the remainder of her life.

As a parent being told that your child has a neurological condition must be a terrifying experience in itself and although not a mother myself have been given a detailed account of my mother’s emotional connection with those words.

Ever since the doctor sat down with my mam to describe how Epilepsy could change the dynamics of my life along with testing her endurance as a parent that day would be the pivotal day that my mam and I would have to join forces, come together and for her to be not just the woman who’d make me laugh but she had to be strong for both of us.

Whether it be the aftermath of a seizure, a feeling towards the neurological appointments, the medication changes where she would be on alert for weeks after while my body adjusted or the discussions where we would consolidate our thoughts my mam never gave me that feeling of being different.

To me I felt different but to her I was her daughter. To her there was never a problem we couldn’t solve and to her I was her only child and she was put on this planet to protect her pride and joy.

When it comes to Epilepsy and the people who surround themselves with our condition their support can become unnoticed. Although you’re suffering parent’s end up stepping up to the plate and provide us with that unconditional love to get us through that day. They too need to be recognised and they too are going though our Epilepsy journey.

As an adult I’ve always been intrigued with the bond a mother can have with their child. I’ve been told on many occasion there’s never a feeling like it. You do your utmost to keep your child safe, to keep them happy, to be the nurturing person in both good times and in bad but most of all to be the person you’re child is never afraid of coming to.

I write this today because throughout my life my mam whether it be associated with my feelings towards Epilepsy or just life in general has made me see that anything is possible.

As I write today about my experiences with my mother I’d like you all to have a little think about the things your mam has done for you, the memories you have with the mother that brought you into this world and the happy times you have shared together.

Mothers are without doubt one of the most valuable assets you’ll ever have. They bring you into this world to protect you and I truly hope wherever in the world you are that you have had a lovely mothers day with memories to treasure.

I’ll leave you with a final quote:

“Motherhood; all love begins and ends there”- Robert Browning.

This is a blog for the mothers across the world. You know we love you x

Deciding who you are.

“I don’t want other people to decide who I am. I want to decide that for myself”- Emma Watson.

As I read the quote above I start to think about the influences that other people have on our lives whether they be family, friends, confidantes, support groups or whether it be ourselves.

I look at how people evolve but ultimately the big question is what does life have in store for us?

To ask that question can be a daunting prospect however over the past couple of days I’ve started to think a tad differently about my life and standing up to not only the past negativity I’ve held onto with my Epilepsy but the feeling of wanting to accept myself and just let go.

The amount of times I’ve questioned myself to others is something I will openly admit. Deep down I knew the answer.

A couple of questions for you.

Have you ever walked into a crowded room and felt like you couldn’t hear anything?

or

Have you looked at what’s around you and thought there’s just something not right about the way you feel?

I know I have, been there, done it and worn the t-shirt a fair few times. I don’t want sympathy when it happens I just know it’s there.

With me I’m a bit like chalk and cheese.

One minute I’m bouncing about like a loppy dog making others laugh and not particularly giving a shit about the minor things around me, then within seconds what felt like it came out of nowhere I’ve been renowned to become anxious and questioning my every thought. It’s like there’s an alternate me. A me that doesn’t quite believe in herself.

In these surroundings there was only one thing I could point the blame at that being my Epilepsy and as years passed the animosity I had towards my condition grew to the point where I didn’t want to accept that I had Epilepsy.

To me I associated Epilepsy not with just having seizures or shaking episodes but the breakdown in my concentration, the remembering to take my medication at the appropriate times and the testing would just feel like hassle.

It was like I knew I had to address these issues but I didn’t know how to. it wasn’t for the lack of support but it was just my way of coping. I knew the things I’ve just described were essential for my diagnosis however I didn’t want to believe they were.

It was only until I had conversations with the ones I loved along with people outside the box such as counselling that it started to become apparent that not only did I have to change my perception towards the feelings I had with Epilepsy but with my life also. It was going to be gradual and by gosh it wasn’t going to be an overnight job.

I’ve been renowned for having self esteem issues and as I’ve grown older it’s becoming less of a burden.

Don’t get me wrong there have been slight hiccups along the way where again the worried Saz will question who she is and what she stands for however instead of moping and making myself feel downright miserable I’ve decided that instead of fucking about it’s about time I started to elevate what I’ve been taught, take the advice of the people around me and to actually decipher what I want.

It’s about letting go of negativity, letting my hair down and not allowing the positive elements of what’s around me to disappear.

When I say this I mean the family who devote their time to the ones they love, the friends who offer advice because they care and the support networks who are only doing their job to make your life easier but to provide the Epilepsy community with that element of acceptance and understanding of their condition is a marvellous thing to have.

We are all in a similar boat with Epilepsy being the name on the side of that boat so why not row together instead of feeling like we’re standing alone.

I’ll let you in on what feels like a reoccurring event that last night was broken because I acknowledged the issue and stood up to what felt like the ghost. Many of you reading may feel like what I’m about to address is a load of bollocks however it made me wonder. Each to their own everyone is entitled to an opinion.

By now you should have a rough idea as to who I am and how daft I can be however on Saturday night my dreams were to become the topic of conversation. In fact this dream felt more like a mini nightmare and I had it for there nights. I’ll attempt to describe it the way I saw it.

All I remember is standing at my living room window looking onto the garden/houses in front of me. The sun was glaring in, it was a bright orangey yellow and the heat was excessive. Apart from the sun everything around me was white there was no noise, no words, no-one around me. I was alone and appreciating the scenery in front of my eyes. Within what felt like seconds behind me was a dark grey shadow just standing there, again no words.

I didn’t want to turn round however could see it in the reflection of the window like it was some sort of ghost, spirit or the image of an individual that didn’t want to be known. Initially I thought it could possibly have been one of my grandparents who’d died however they always show their face in my dreams so who the hell was this person and why since Saturday had they been in this dream that felt so much like reality?

Before long the shadow approaches me and I wake up still oblivious as to who this person is.

All I know is that I’ve woken sweating and scared. Immediately while awake I become freezing, still feeling that that same shadow is standing beside me. As I turn around there’s nothing there but my bedroom walls and the accessories on my chest of drawers. It just seems strange. To kick myself out of it I go downstairs for a drink and pop the TV on to forget what I’ve just witnessed.

After acknowledging this with friends questions were brought up have the anxieties that I’ve just written been the main tell tale sign that changes are being made however is there still room for improvement? Would I have to stand up to this shadow and see what happens?

I therefore decided that if this dream was to go into last night that I would have to decipher what it was getting to me and address it.

As I did so last night whilst eating my supper I thought to myself. Is that shadow me? Is it Saz doing battle with herself and if so how the hell am I going to solve this? If this dream just miraculously stops tonight will I ever solve the mystery as to who this shadowy figure is?

Funnily enough last night I addressed this issue and that may explain why I’m writing today. As I went to bed last night deja vu struck and there I was again at the window with the greyish shadow.

All I remember is turning around with my hands across my eyes. As I gradually removed my hands the person before me was in fact….. Me. Identical, not a child, a teenager but me as I am right now.

As I questioned myself in the dream and stood up to why it had scared me since Saturday there was only one thing that would define how the other me felt and that was the shadowy figure pointing her finger to the sun and to the beautiful surroundings around me before sitting down for a moment. She finally walked off leaving me alone with my thoughts in the same room with the sun still beckoning in.

The only way I can interpret this dream is that there was a part of my psyche that wanted to change, someone or something greater than me was giving me a message. I was giving myself that message and that was to just be me, to let go of the worry, to allow myself to be the person I want to be and to eradicate the trouble that I burdened myself with for so long.

This wasn’t helping my condition it was just making me feel more anxious about it therefore what was I going to do about it? The answer was to just be happy and to accept that the past is the past, the present is now and the future is yet to be written.

As for the remainder of the week…

Bloody hells bells. The bedroom is officially papered and is looking rather clean looking. The walls are white, the wallpaper a silvery grey and the room a pleasure to sleep in well I’m hoping so after tonight.

As for the kitchen hell that’s a completely different blog post altogether because that room resembles a shithole. The wallpaper is coming off the kitchen as we speak and the kitchen is due for a refurbishment over the next couple of weeks.

Food wise. Well.. The clean eating part of me is getting there. The odd sniff of chocolate beckons my way every so often but I’ve decided the odd treat isn’t so bad.

Exercise wise.. I’ve fell back into the infomercial fad however I have to admit I was impressed hence the ordering in 3 easy payments. The person I’m drawn to is Shaun T’s T25! Now before I hear you all saying “Saz not another DVD from the telly” I’ve decided to hell with it I’m gonna give it a go. If all else fails I’ll send it back this time and get a refund.

On the other hand The lean machine workouts are fabulous however as a test of endurance I need a kick up the arse therefore I’m doing it. Roll on the delivery!

As for the rest well it’s my gran’s 84th birthday coming up so I cannot wait for that so roll on the fine wine, laughs and just general banter as we approach these celebrations this weekend.

To conclude today’s post. Whether it be dreams, things you write down or thought patterns you have deciphering who you are can be the ultimate challenge.

Having Epilepsy can feel like there’s been a spanner thrown in the works however it can make you believe and having Epilepsy can still allow you to have a life even if it doesn’t feel like it at times. Nobody can make decisions for you only you can do that for yourself.