Does time really change things?

“They always say time changes things but you actually have to change them yourself- Andy Warhol.

Good evening everyone.

Before I kick off tonight’s post I’ve got to say it “Oooo Halloween’s tomorrow” and I know that like most Halloween’s I’ll be crawled up on the sofa with my other half attempting to watch a truly gruesome film praying to god the cat doesn’t jump on my knee and give me a fright resulting in me spilling hot tea on my pyjama bottoms. Never mind.

Lately my twitter pals have done their utmost to scare me with their Halloween countdown of scary classic films.

I’m trying not to act scared however you all know I jump at the slightest thing and know for a fact that whilst watching a film I pretty much pap my pants at every available opportunity.. not quite literally but not very far off. Keep them coming ladies just keep them coming! I’m remaining upbeat.. or so she says.

On a more serious note tonight’s quote has been selected for more than one reason and I think the quote itself rings true for the majority of people including myself.

The first segment is about the one thing I try so hard to tweet about that being Epilepsy awareness, the second is about people in general and whether time in fact changes things.

After my fabulous no muss no fuss attempt to zest up my life even more than normal I was hit with a blow Monday morning at work before lunch shaking like a leaf and knowing that the remainder of my day would consist of shaking and sleeping.

Instead of getting well pissed off at the concept of yet another shaky bout I decided that the only way forward was to accept the inevitable, hopefully have a quick bite to eat and snooze for the remainder of the day.

As my husband was indisposed my mother jumped in pretty much with a superwoman outfit on underneath her wholly jumper rescuing her daughter from the dreaded shakes. After assisting me with my homemade cannelloni dish refrigerated from the night before she sat with me, held my shaky hands while I ate this delightful dish, changed me out of my work clothes, put me into bed and stroked my hair until I drifted off mid shake.

Whilst sleeping I knew I felt safe not just because my mam was beside me but that for once my mind wasn’t affiliated with negativity it was about knowing that the shakes would eventually subside and that hopefully after a good rest I would resume back to normal having blonde moments and dancing when possible.

Fast forward seven hours and after a four hour sleep and a lie on the sofa watching back to back Sex and the city episodes I decided that instead of contemplating feeling sorry for myself that I would draft my thoughts onto my phone and write down what good came of Monday’s shake. Whilst reading this some may question why this was essential and what would come from writing about my feelings however to me it was a required element to my recovery.

Compared to me nine years ago when the shakes waved a swift hello and caused complete havoc I was accepting the fact that I was and now are becoming a different person.

Unfortunately my emotional distress when a shake arises may never alter however I know that with time the new me should hopefully be able to accept that life is not always what we envisage it to be and that in times of discomfort that we all have to relax at some stage.

When it comes to people my perception of others has changed somewhat over time. If you remove my Epilepsy out of the equation and you look at me as a person then it would be safe to say that I’ve had my fair share of worry some of which I’ve put onto myself.

Whether it be friendships, relationships, family or money if I’m honest to myself I have had a tendancy of putting other people’s opinions first waiting for them to make the first move in order to determine where my life goes from there on in. Unfortunately what I’ve grasped (maybe a little too late) is that that’s not the way the world works.

People have their own priorities in life and you know what? That isn’t a weakness or that people dislike you that just reflects that we aren’t all from the same mould and that what is important to one isn’t as important to someone else.

What I’ve had to realise is that you can’t change someone into the way you think. You should draw your own conclusion, address your opinion and leave the rest well alone. Life is a rollercoaster and unfortunately there’s going to be people who get off your carriage at one time or another.

When it comes to my life my priority is my husband, immediate family and a few friends that have supported me throughout my journey as a person not as a condition. Like me we’ve had our differences however after acknowledging them as adults have made our feelings known, have stook to them and are moving forward as adults should do.

Life is about taking responsibility for your own actions and this applies to all aspects of your life.

Irrespective of age you can go to people for guidance, you can offer an opinion however you ultimately have to make the necessary choices to benefit YOU not anyone else because when all’s said and done only YOU have to accept the decisions you’ve made.

Life is for living it’s not about second guessing and trust me I’ve done enough of that in my time to second guess a million people! I will reiterate this to you all.

Life is for living.

It’s about chapters in your book that YOU create and shouldn’t be what other’s create for you unless it’s a romantic meal or a spa day of course.

My book has a hell of a lot of juicy chapters what with the shakes, the fits, the arguments with my parents, the horrendous fashion faux pas I’ve made and don’t get me started on my flat feet however all jokes aside I know that these are my chapters and if a book’s all plain sailing then it’ll be a pretty boring book let’s put it that way.

As for the remainder of my week. That’s been pretty smooth. No tidal waves yet!

Work- It’s pay day tomorrow! Get up there! Woooo!

Home- Cannot stop eating. All healthy of course.

Exercise- Resumed today, could be better. Squatting for England.

The rest- Husband and Benny doing well… Benny got a new collar so he’s gleaming in the autumnal sun.

To conclude today’s post. Time can be a healer however does it really change things? Unfortunately with a condition such as Epilepsy that may never change over time because you have no control over it, you have however got control over everything else. You are responsible for caring for you.

On the basis you stay true to who you are, are courteous to others and are becoming happier in your own skin then no one else can ask for anything more of you.

Time is of the essence therefore in my case let the shakes do it’s own thing, let me remain positive and let’s see what happens next.

Sing, dance and tell.

 

 

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“Sing your song, dance your dance, tell your tale”- Anon.

Today’s post is a little different to the one’s I usually write. I think it’s dawning on me that we can all stand tall and that we shouldn’t have to worry year upon year over something that’s out of our control. I know it’s a touchy subject to raise because I don’t live your life however what I do know is that there is a fighter inside of us all that must come out.

This afternoon whilst my husband watched the football I decided it only right to get out of the way and watched something else.

Here I sat watching a period drama in which men, women and children in the early 20th century were celebrating Christmas in a prestigious upper class household. The servants would stand playing party games in which they would all gather saying to each individual “Song, dance or Rhyme”.

For many lower class persons  the only real choices they had were the first two options the latter wasn’t really an option. For those who were fortunate to be literate their mouths remained shut out of fear they would lose their job or not be accepted as a person within their own class.

The quote that has been chosen today is something I’ve found to be a worry within the Epilepsy community. Like you all advocating for your causes I decided it was only right to add the first photo of Sazzle’s blog. I’m not technical in the slightest so I’m hoping the bugger saves!

In true wartime fashion I thought it would be apt to channel my cause and instead of saying “Keep calm and squat on” that I would say to you all “Keep calm and support Epilepsy”.

Epilepsy effects over 65 million people across the world in which a minority are ignorant to the condition we endure as individuals, parents, friends and loved ones of the person involved. Whether it be at home, in the workplace or walking along the street minding our own business the concern arises as to how you can be perceived to others.

Unlike their own problems that may not be on display for all to see Epilepsy is a condition that unfortunately results in lack of sensation, lack of seizure control and numbness to say the least. It’s a condition that show’s it’s face on a daily basis and unfortunately doesn’t give you the warning signs you so desperately crave when an episode does hit.

Words at time cannot express my anger towards the people that back you into a corner and that make you feel worthless. You don’t need to feel degraded by anyone nor should you have to constantly justify your battles with Epilepsy to people you feel uncomfortable around.

You should however realise that by telling your story can enable others with the same condition to want more for themselves and to see that if you can do it then so can they.

As I read the magnificent work from the people I have had the opportunity to chat to I can see that sometimes the only way we get to reveal our feelings is through the blogs we write, the charitable events we do and the talks amongst ourselves we have.

Unfortunately the one thing that a number of people fail to see is the anxieties we have to endure when Epilepsy truly takes hold. You know and I know how that feels therefore I won’t elaborate any more than necessary.   

After being seizure free for 4 and a half years I am now in a place where I’ve been before only this time I’m a little older and dare I say a little wiser.

Although prominently placed at the back of my mind my fears of my seizures returning is not such a concern that it was once was. This is because I know that I’ve succeeded for the 4 and a half years the seizures didn’t make an appearance. Ideally I would have not had the shakes either however as you are all aware this is a part of my condition that nine years into my 20 year cycle I’ve started to accept as the norm.  

What I would like to say this evening is that each and every one of you have never judged who I was, have never sat there and given me cause for concern and have made me see that irrespective of the medication side effects and the down days that we all capable of  standing tall against the stigma and the worry that can surround us.

Unlike the person I perceived myself to be a couple of years ago I know now that I’m capable of being that happy go lucky person I want to be without the unrealistic expectations I once burdened myself with. It’s not about trying to prove a point and show others that because you have a condition that you can’t have it all. I know in myself that I have it all right now.

As much as we would all want that little extra luxury in our lives I know that I’m starting to become comfortable with who Saz is and that because of the people I surround myself with that I’m becoming the stronger person that I have longed to be.

Before I start whittering about the weekend read this and know that we are all here to help one another. You’re bound to have stumbles along the way however who doesn’t? Just because others walk taller than most some days doesn’t necessarily mean that they don’t have the world on their shoulders as you do yours. They can just hide it that bit better.

You are a magnificent person within yourself therefore give yourself recognition and be who you want to be.

On a lighter note.

The weekend has been another relaxing one with me talking and Dad listening. Spending time with Dad makes me see how valuable his input is in my life and how one person can make the day go ever so smoothly. It was my mam’s birthday and seeing her made me think about the times we’ve shared and the birthday’s we’ve had together.

My husband on the other hand is someone that keep’s me laughing and this weekend was no different what with his eating me out of house and home and spilling alcohol all over my carpet! Nevermind I spilt a glass of orange juice on the floor last night without him noticing therefore I’m just as bad!

Exercise. Going well and extremely sore. Today I did a double of slim in 6. It should have been called sore in 6 because the pain up the occasional pains don’t half hurt! Frozen peas time! It’s an excuse for me to have a mid afternoon snooze to say the least!

Food wise dare I say it?

I’ve cooked yet another chicken! Come pay day it’s all about the brisket therefore I’m preparing my recipes in advance to broaden my horizons and shine on my culinary skills.

To conclude today’s post. Song, dance or tale in our case. When I say tale I say tell your story if you feel up to it and see what response you get. You may never know what response you receive however at least you’ve said what you needed to say.

Never try to be a second rate version of yourself to accommodate others because that’s not who you should be. Do they do it for you? If the answer’s no then why should you change your way of thinking for them? You’re opinion is just as valuable as the next.

Don’t give up just because of what someone has said. Use that as motivation to push harder than ever before.

With me I’ve had questions for years I’ve always wanted to address however never had the courage to out of fear I’d be shot down in flames. Telling my story through Sazzle’s blog has shown me that you shouldn’t be as singled out as you think you are. 

There are people out there who support you, that care and who may give you the answers you’ve longed for. As for the rest well.. do you really want them in your life? I think not.

 

 

 

 

 

Seeing the world.

“Better keep yourself clean and bright. You are the window through which you must see the world”- George Bernard Shaw

The world. It can sometimes feel like a daunting prospect when you’re suffering from a life long condition however to others it can be taken for granted. I think to an extent we have all maybe taken things for granted at some point in our lives such as our health and our loved ones however that’s what makes you human.

You aren’t invincible and under no circumstance is anyone perfect therefore after changing my mind set I know I cannot beat myself up about that.

I have however read this afternoon’s quote and thought to myself why didn’t I not look through the window George is describing a long time ago? Why is it only now that I can see people for who they are and situations for what they represent?

I think I can answer that question quite promptly.

I think it’s because I’ve never actually sat back and looked at who I am as a person. I’ve looked at myself as a wife, a friend, a relative and a person who has Epilepsy however not the Saz as you all know.

I don’t think I’ve noticed who I am and what world I’ve created for myself. I think as deep as this sounds if I’m honest with myself I don’t think I’ve given myself the opportunity to embrace what’s around me.

When the word clean and bright is mentioned you think of something sparkling, gleaming and shining ever so brightly maybe to the extent that you have to wear a pair of sunglasses to take the glare from your eyes. I never thought of myself as a sparkler I saw myself as being someone who unfortunately was struck with an condition from an early age that I couldn’t run away from.

This condition to me made me feel scruffy and made the uncertainty of my life all that more apparent.

As I write this my opinions of this so called dirtiness has faded more than ever because Epilepsy isn’t just about epileptic episodes it can make you think differently in some cases for the better.

Some may argue at that however for me it stopped me from drinking excessively out of fear my medication would be erased, ensured that the majority of the time I was home at a reasonable hour and that I looked after myself incase the worst case scenario should happen.

I remember as a child watching my mother work extremely long hours to provide for me, my dad picking me up from my aunt’s house after school spending time with me before taking me to my Grans to spend time with my friends and to shut myself off from the condition I had.

Growing up in the main I enjoyed my childhood playing games and laughing amongst friends however there was this part of me I felt that didn’t fully belong. Maybe it was because I didn’t appreciate who I was and how far I was coming. Like all children I needed to find myself in the world and unfortunately when you’re convulsing regularly and feeling insecure about yourself then you’re bound to feel that sense of disappointment.

As a person who post therapy can now sit here and say that counselling was all worth it I now know that within myself that I now know I belong.

I know there are millions of people out there who may feel that same sense of disappointment like they are caving in without no recognition from others. I understand entirely how that feels particularly after you’ve had an episode and you’re feeling worse for wear.

It infuriates me something rotten to think that there are a significant amount of people who are ignorant to the anxieties men, women and children of all ages have to contend with due to lack of understanding and support.

When I was younger I was extremely fortunate to have a family who listened to me who although didn’t really understand what I was going through tried their very best to offer advice and give me words of encouragement when I wasn’t quite myself.

At counselling, therapy whatever you want to call it I felt at peace with myself like I had opened a can of worms and didn’t want to hold the can anymore. I didn’t want to have that sense of self doubt when a shaky bout hit or an angry spell was arising or question my self esteem in times when I should have been laughing out loud and enjoying myself when I was feeling stronger.

For years I’ve wanted to be the person I’ve only ever dreamt of. that person is someone who’s content with themselves, who appreciates the people surrounding her and who when all’s said and done can laugh in the face of danger, remain optimistic in times of need and tell the people who don’t actually give a shit to sod off and sort their own problems instead of drawing their conclusion of my life.

I now know that 20 years on this can be accomplished. As an adult taking baby steps may sound silly however has been essential in order for me to move forward.

As for the remainder of my week. Let’s summarise.

Been to work all week and are well and truly shattered. Had the opportunity to catch up with friends and family and to have a bloody good laugh in the process.

As for my eating that’s like 50/50. Today I succumbed to a twirl. I didn’t give anyone a twirl however the rippled chocolate peering out of the top of it’s purple wrapping made me smile. It was wolfed down in under a minute and was worth every bite. Little and not so often. Remembering the good old saying a moment on the lips a lifetime on the hips!

Better still… I’m extremely impressed with my cooking and I’m adamant that I will be a domestic goddess within the next year.. or five!

Exercise wise this has slacked this week as I’m well and truly hooked on Boardwalk Empire. Wowsers! Back on it in five minutes!

To conclude today’s post. See the world. At times we turn on our television sets and see what’s happening in the world today to which we try our utmost to refrain from shouting profanities because we cannot change what happens in other people’s lives. We can however change the way we view our own.

What I would say is that you can be if you want to be the person who has the last laugh. Condition or not if you’re happy with “your lot” then you have the last laugh because no one can take that away from you. Shine as brightly as you want to and as for the rest well that’s history.

Smiling and staring Epilepsy in the face.

“Nothing you wear is more important than your smile”- Connie Stevens.

Smiling. The big booming grin that can tell a thousand tales.

Smiling usually consists of you raising both sides of your mouth and showing off those pearly whites of yours or in my case my relatively straight teeth that although are quite nice have been stained a tad by the medication I’ve taken over the years.

As Connie said above smiling is most important however from my experience can be something that people frown at because in some cases a smile can disguise a underlying problem that you aren’t prepared to accept. It can also be because someone has upset you or offended you in some way.

It’s the smiling on the off chance that no one will question what’s the matter and it’s the sorrow hiding behind that smile that can make it intriguing to others because deep down they can see your troubles without you even having to say anything.

With me I think I’ve only ever forced a smile about a dozen times, if I recall correctly that was possibly around company I didn’t particularly want to be around. Here I was smiling whilst looking for the back entrance so I could make a speedy exit. Other moments have included sitting in front of my neurologist on my return from university trying my utmost to disguise my worry that I would be returning back to my medication.

Tonight’s quote basically sums up what I think about smiling.

Like many of my previous posts people may sit and question why I’m writing about this topic however I think it’s something quite useful when determining someone else’s behaviour. It can in fact make people who suffer from a nervous disposition quite uncomfortable thus resulting in anxiety attacks, paranoia and in the worse case scenario a seizure.

I’m not going to lie and I’m going to lay my cards on the table. I was and on occasion still am a worrier. From the day I was diagnosed worry got on top of me.

Whether it be the occasional side effect, the tiredness after a seizure or the concerns surrounding where my life would end up I decided to take the world on my shoulders. No one told me I had to nor did anyone ask me to take on this role, I took this upon myself to mask that I was struggling with Epilepsy and only at the age of 25 did I see what was happening. This was when therapy entered my life.

Unfortunately as the years passed by my want for everyone else to be happy made me question where I stood and whether I could be happy with the condition I had. Previous therapy sessions took me to a point and although extremely beneficial still didn’t feel like it was hitting the spot as I kept on jumping back into negative behaviours.
I wasn’t entirely fulfilled because I hadn’t accepted what I had therefore was living my life on a tight rope hoping that I wouldn’t fall off.

Ignore this if I’ve told you this story before however I remember the day when I previously went into a therapy session with Bob approximately three years ago.

Bob and I from the offset had a game plan that being to attempt to get my issues resolved in six weeks and for me to realise that the world didn’t revolve around Epilepsy my condition was solely a part of me nothing more.

Within six weeks Bob gave me the tools I needed to regulate my way of thinking and to see that life wasn’t just about worry. It was about smiling, having a laugh and trying to fathom out who Saz was because she hid behind her condition for far too long.

Mid way through my therapy Bob asked me to reminisce and to rewind back seventeen years to when I was diagnosed.

Four chairs were placed either side of me in which I had to sit in all four and behave to fit the scenario. The four chairs represented me at the ages of 8, 18, Epilepsy and now. He would ask the questions the rest was up to me.

Whilst reading this some of you may ask what is the Epilepsy chair all about?

The Epilepsy chair was a chair that pose great significance in this session. This chair would hold the answers for me to finally get a grip and understand that Epilepsy wasn’t the root of all evil, it was the fear inside of me about my condition that made me feel the way I did.

Bob asked me an array of questions in each seat. The earlier stages I sat there little girl lost wondering why and how Epilepsy entered my life, how my family would cope with such a complex condition and whether I would be able to stop myself from worrying.

I entered teenage life in chair two. The seizures returned, I returned from university feeling sorry for myself because my condition prevented me from having a life and the worry that I was a failure because by returning I’d let my parents down thus allowing Epilepsy to win.

Chair three well. What can I say? Chair three was the Epilepsy chair. Bob asked that I become my condition, in which I would be my condition as though the Epilepsy was a person. I would have to tell him why Epilepsy entered my life to which there was no real answer.

Feeling like I was hallucinating at one stage I answered the Epilepsy questions with such anger that I actually stood up at one stage shouting at Bob like he was my enemy.

I said at one point of our session that I wanted to be loved, I wanted a place to live and I wasn’t wanting to do battle with Saz this was just who I was. I was not there to cause commotion and make other people’s lives a misery and that by shutting Saz’s body down that I was helping her.

Chair four was the me now and I swear within 45 minutes the constant worry I had battled with for years started to make sense.

The smile started to return and I felt like my condition and I couldn’t keep going to battle with one another because the unnecessary worry I was putting onto myself on my seizure free days was making matters worse. I should have been enjoying myself on my seizure free days than backing myself into a corner that quite frankly I didn’t have to do.

Whilst writing this the emotion comes flooding back and you know what? Life is worth so much more than panic, aggravation and constant worry. We are all bound to have moments such as the ones I’ve described however you are the person that has to live with this and that you are the person people love up to and adore.

I hope what I have written today hasn’t alarmed you or disturbed you in any way because this is not my intention however I truly feel that the occasional push to see how inspirational you are is needed in order for change to happen.

Epilepsy can be a right pain in the arse at times and I understand that however sometimes it’s best to grab the bull by the horns and just go with the flow. If you fall then you get back up, if you don’t then great. Another happy day.

As for the remainder of the day.

I’m slowly but surely turning into a domestic goddess! Me I ask myself? Blooming heck I think this new me is messing with my head. Apart from having to buy the odd bag of prepared veg because my hands shake so much I end up cutting myself I think I’m doing quite well. I’ve made casseroles, soups and chicken dinners. Nothing has gone to waste! And before you say no I’m not lazy! Haha!

As for the exercise well I’m thoroughly enjoying my slim in 6. As all of my meals are packed with vegetables and protein I think this has helped sustain my energy to continue onto the more challenging workouts.

Family well. They are splendid. Dad and I didn’t win on our football bets (yet again) and as for my husband well he’s had no further spillages in the kitchen and keeps me laughing on a daily basis. Benny on the other hand stole a piece of unattended chicken this morning before gallivanting outdoors.. much to the dismay of his mam.

To conclude today’s post. Smiling is so important as is laughing for that matter. My dad used to say when I was younger have a laugh an hour and that will make the day seem brighter.

Epilepsy doesn’t have to be our enemy nor does any other medical condition for that matter. We make the best with what we have therefore that’s all you can ask for. Never under any circumstance worry about what cannot be but what can be. You are lovely the way you are therefore chin up and show me your pearly whites! Go on I know you can.. Say cheese!

This isn’t the end. Be proud of you.

“Everything is ok in the end, if it’s not ok then it isn’t the end”- Anon.

A story. It has a start, a middle and an end. From my ramblings I think you know enough about me by now.

As corny as this may sound and in true Saz fashion I feel like I’m putting the Saz in pizazz. Apologies I quite literally crack the worst one liners ever!

Tonight’s quote has been chosen because over the course of the past week I’ve seen a change in myself like no other. I’m hoping it stays for the long term.

The feeling of serving a purpose and the knowing that although I have disliked the condition I’ve had for the length of time I’ve had it that there has been a slight change in the way I perceive not only myself but Epilepsy in general.

You are all aware of how my day starts however throughout the day my mood has a tendency to change within an hour of taking my medication and then there’s the worry of whether I’ll be unwell and whether I have to halt the day to accommodate this pitfall I call Epilepsy. In my mind my fingers are crossed, my long gangly toes crossed also and the hope that my condition won’t make me feel sorry for myself and translate into paranoia, concern and upheaval.

Since my appointment with neurology on Monday I’ve started to document my feelings towards my condition and like when I would previously record my thought patterns, dates of shaking and questions I wanted to raise with my neurologist in my epilepsy diary I’ve decided to adopt a different approach and actually write what I am achieving within myself right now.

Now people may sit and question that I’m not actually doing anything as such. I’m going to work, coming home, doing chores, completing my exercise blah blah blah however to me they aren’t just normal everyday things.

To me they’re duties that I’m doing independently and that I’m doing relatively well in without Epilepsy getting in the way. On your good days it’s all worthwhile and on your down days you’re disappointed at the prospect that these same jobs will have to wait till the following day.

For those reading this may understand and for the remainder of you; you may question why I’ve listed this tonight. Maybe it’s because some things that others take for granted are deemed as mini victories in the eyes of someone suffering from a long term medical condition.

To me accomplishing small things such as those listed above is proving to myself that although I may never know when an episode will occur that I’m strong enough to get by. Accomplishing those things also mean that I feel free, normal and just the person that I want to be, as you all want to be within yourselves.

Over the past few days I’ve seen others have the odd struggle with their condition however their strength and determination to cope irrespective of the episodes they’re having makes me want to wrap my arms round them, give them a cuddle and tell them everything’s ok however I know that those are the people who keep me going, who keep me determined and in true advocate style show the world what they’re made of.

On Wednesday I went to see my counsellor and explained what happened two days previous. Upon contact with her I could feel myself for once smiling over the prospect that although I have something I’ve wanted rid of for so long that everyone deserves a chance. Everyone is entitled to that element of happiness and irrespective of how hard it is to get there we all deserve to be happy in more ways than one.

Whilst discussing my current situation we both sat there and drew the same conclusion. Epilepsy shouldn’t be about doom and gloom, seizures and medication it should be about acknowledging the condition you have, understanding that in times of struggle you’re a person who copes extremely well and are serving a purpose within the epilepsy community because you’re experiences help others.

The fact that we come together as a community is a force to be reckoned with and to be brutally honest the people I’ve had the pleasure of speaking to have given me that incentive to carry on writing and are giving me that support that I’ve craved for so long from people “outside of the box” i.e. outside of friends and family who maybe don’t fully understand our situation.

I’ve never understood Epilepsy until now. To this day I’m still learning. There’s never a day that passes by when it’s not on my mind however I’m starting to come to terms with the fact that it isn’t going anywhere in a hurry and by gosh I wouldn’t allow it to be the end because I know how difficult it is to get to a reasonably happy place.

After years of talking, arguing and disagreeing with the ones I love I’m starting to realise that I’m trying my best right now. I’m never going to please everyone all of the time but why do I want to?

The shakes may never leave me, the seizures hopefully won’t return however if they do I can give myself that pat on the back and say that it was good while it lasted. There’s people in a worse situation than me therefore I should be proud of myself.

As for the remainder of my week, let’s summarise:

Family- The usual love spending time with family. Both my husband and Benny (the cat) are breaking the bank and eating me out of house and home.

Exercise- 3 times this week. Not bad, room for improvement. Jeans are feeling looser.

Food- Chocolate is still in my life, I’m not even going to try and cut it out because it always bats it’s lashes at me and I succumb to eating it. Otherwise my cooking skills are improving!

Anything else: Not really. Just smiling like never before! 🙂

To conclude today’s post. This isn’t the end by any stretch of the imagination. Look deep into yourself and see what you’re currently achieving. By doing this this may allow you to move forward and sustain that positive factor. Everyone goes through difficult times however the not so difficult makes us appreciate the good days therefore put this into practice, crack a smile and just be you.

Someone’s looking down on me.

No quotes just one word. Hope.

A mixture of three things tonight. One person, one condition, one almighty decision.

Not usually am I a person who believes in the afterlife however over the past couple of years I’ve started to think differently.

Today I’m convinced someone was looking down on me, that person has to be my Shoops.

Like the sun that shone so brightly on our wedding day he was the man who although didn’t understand fully my condition attempted to provide me with the advice I craved growing up. He wanted to learn for my sake however never got the opportunity to see how far I’ve come and who you (all my friends and followers) are that have helped me get there.

Many of you may question who my shoops is however this person is without doubt the most fabulous and gracious man I’ve ever met. Not only was he a gentleman and a man with integrity but was someone that I am proud to say was my granddad.

For those who have read my blog from the get go may be aware of how inspirational this man was to me.

He wasn’t the most intelligent however he was a man of great elegance, who would only swear amongst men when the football was on of a Friday evening whilst chatting with the gents over a few swift ales in the smoking room. He was also the man who picked me up when my parent’s permanently separated.

You knew my Shoops was coming because of the blue chinos he wore, the flat cap he’d use to greet others and the fact that he was the most well dressed man in the room. He was a dear friend to all.

The word Shoops is a pet name that at the tender age of two I called him whilst standing up at my gran’s house living room cushions around me trying to balance myself.

It’s safe to say that my shoops was the man who caught me when I fell, kept open the restaurant door for my gran and I to walk through, slid the odd galaxy chocolate bar my way when I was occasionally naughty and who made me see that there were men in the world who weren’t all about sex, drugs and rock and roll.

Unfortunately at the age of 17 my shoops lost his battle with throat cancer and it quite literally broke me in two.

I loved this man with all my heart and was honoured to call him mine. Nowadays I see my shoop’s qualities in the two remaining men in my life my husband and my dad. Their personalities reflect my Shoop’s zest for life and want for success for his only grandchild.

Both men provide me with the stability, continuous support and honesty I need to get me by. Like the man before them they have made me see that life is too short to ponder and that memories cannot be taken from you. You create them, you deliver those memories verbally to others and write about them to appreciate that life is for living.

Today was a day filled with apprehension and anticipation as off I toddled to neurology.

Firstly there was the apprehensiveness of my dreams being shattered and the worry that my husband and I wouldn’t be able to extend our family. On the flip side the anticipation started to take over me. It was the me hoping so desperately that we would hear some good news and that the light I try so hard to see would be standing in front of me.

Come 1.45pm here my husband and I sitting in the neurology waiting room. After a forty minute delay I walked into see the neurologist palms sweaty and head all a blur.

Within moments there I was sitting clutching my hands in my husband’s explaining to my neurologist my dilemma.

Whilst flicking through my medical records my neurologist made me aware that it had been almost three years since our last appointment in which I talked and he listened.

Today it was a completely different ballgame. Now there was something greater than myself to focus on, this time it was about concentrating on my family. My husband being my carer so to speak throughout this new journey and me having to remain calm in the process.

Yes my shakes are a concern however this is something that has been on my mind since I became an adult.

Whilst talking to my neurologist I could feel my throat going dry, my sentences being rattled off and me not pausing for breath. It was like the worry was overwhelming me and I wanted to get this appointment over and done with so I could get on with my life.

Within half an hour my neurologist had confirmed that the medication dosage I was on was not deemed as a risk therefore there was no need to alter. He continued by saying that Keppra was a relatively new anti epileptic drug however there were hundreds of women who although had seizures during their pregnancy were perfectly fine. The chances of hereditary epilepsy would be low as neither of my parents carried the epilepsy gene.

Further questions were raised from me the biggest one being:

“What would happen if I had a seizure whilst delivering?”

My neurologist calmed me and explained that the relevant medical professionals would be monitoring me repeatedly and would be on call should the worse case scenario happen of which the chances are remote.

On the basis I look after myself, keep up the medication dosage I’m currently on and remain as stress free as possible that there was no stopping us extending the family we would like. The ball is officially in our court.

As I walked out the room my body broke down like someone had taken a massive weight off my shoulders. My smile was like the Cheshire cat from Alice and Wonderland and for the first time in a long time Epilepsy wasn’t the enemy.

After thinking long and hard about the questions raised, my specialist’s response and my emotions towards these answers I let out a long sigh, looked at my husband and realised that whoever was in the room with me outside of us three blessed us and for once had given us the strength to move forward.

Before long questions were whirring round in my mind. Was my neurologist giving me the green light? Is this really happening to us? Could we in a year’s time perhaps have a child?

As we left the hospital today I jumped into the car, celebrated with a coffee and burst into tears. Although these struggles have tested me this was now our time.

Twenty years of fighting had brought me to this. A part of me sat at home amongst my loved ones and thought that If all I have to worry about is the shaking then I’m extremely fortunate.

Sitting worrying about every little thing should be irrelevant. Focusing on yourself along with your partner should become top priority.

Epilepsy is a condition something that tests us on a daily basis however the perseverance to want some form of normality and the patience you have to have to cope is something that unfortunately in today’s society can go unnoticed. This is why documenting our experiences can enable others to see that they’re not alone.
You are never alone.

As for the remainder of my day.

Food- Monday only means one thing In laws feast night. Nothing too fatty just a chicken dinner and a couple of cups of tea.

Exercise- Two sessions over the weekend none today.

Family- Ecstatic about today’s news.

Other news- I found a fiver (£5) over the weekend therefore I was overjoyed. This contributed towards my chicken dishes over the weekend however that’s an entirely different blog post altogether.

To conclude today’s post. Sometimes life throws you the unexpected. Today it showed me that my hard work is paying off. As for my shoops he will remain forever in my memories. He is the man with the plan and today he revealed that we are all in this together. He has given me hope.

Love you Shoops. xx

Do something today..

“Do something today that your future self will thank you for”- Anon.

You know what it is? Life throws all sorts of problems and to be brutally honest that’s just normal in my world as it is with so many I have the pleasure to talk to. Sometimes writing this blog is therapeutic other times it feels like I’m pouring the little brain I have into a document and hoping that someone will understand exactly where I’m coming from.

Throughout this week my head’s been all over the shop. One second I’m full of beans laughing and joking with the best of them and the next minute I’m shaking, getting all paranoid and crying till I cry no more. The majority of the week was upbeat, positive and just your standard week until yesterday hit.

A quick question for you all. Do you sometimes feel like you’re powerless like your body has been taken over by someone else? Well on Wednesday another part of me decided to take over and you know what it felt strange. Halloween came early.

Unlike other minor shaky bouts this one made me feel rather worthless and I wanted to just crawl up in a ball and shut the world out. It felt bloody awful and something that although I knew would pass had left a lasting impression on me. My mascara was all over my face, my hair well and truly stuck up like lightning and my mam rather concerned walking me to my husband’s car at work.

It all started about 4.30am yesterday morning the alarm was due to go off in an hour’s time and I was restless pacing backwards and forwards to the toilet thinking to myself that something wasn’t right. Without looking too much into what was bothering me I decided to return to bed eyes fixated on the ceiling and my husband wondering what was the matter.

Within an hour I started loosing the sensation in the left hand side of my face and was extremely angry at yet again my body closing down on me. What was it this time? Consciously I was perfectly fine was it my subconscious playing tricks with me? I couldn’t quite answer that question. As you’re all well aware I get no warning.

Adamant that I wouldn’t be defeated by this episode I foolishly went to work trying so desperately to resume back to normal on the off chance that the feeling would return, the shaking wouldn’t arrive and that I could continue my day with a bit normality. Unfortunately this wasn’t meant to be.

Instead of accepting that my body was shutting down I couldn’t bring myself to accept it and wondered why I wasn’t overcoming this. My head was in bits, my body shaking repeatedly and my mind wandering as I usually do mid shake.

Whilst shaking the one question that entered my mind was Is this all worth it? Why do we as Epilepsy sufferers try to teach ourselves to overcome this torment when we know deep down that we have to ride out the storm?

Even after twenty years of suffering there’s this part of me that knows acceptance is key and that although I’ve reiterated this to you all on more than one occasion it is the most important.

After sleeping for 3 and a half hours, invading my fridge afterwards and looking back at what just happened it got me thinking.

We go through life with these potholes right in front of us however instead of stumbling we try our utmost to dodge them as though nothing ever happened. Unfortunately life isn’t as simple as that and instead of trying to smooth over the cracks knowing that your condition is a part of you, feeling that you are worthwhile even when you’re ill and realising that although we stumble we always get back up. This is something we should hold rather close to our chest instead of shying it away.

My parents used to say to me that it takes more of a person to admit defeat and get back up than to sit there doing nothing. Sitting doesn’t achieve anything nor does trying to push yourself when you know you don’t have the energy to carry on. Sometimes we need to listen to the people who care, embrace what we have, listen to our bodies and acknowledge when we aren’t at our peak.

The quote I’d written at the start of this evening’s blog pretty much explains it all.

Do something today that your future self will thank you for. Acknowledge the worry, address the issue and live your life the best way you can. I don’t think I can simplify it in any other way.

You’re bound to feel shit when you’ve had a seizure, you’re bound to feel low and concerned about your condition however you’re strong and I don’t think we take enough credit for what we have to endure. This isn’t to say that I want pity nor do you want pity but that together as a unit we get by, we help one another and you know what that’s priceless.

As for the rest of the week. Let’s sum it up in a nutshell.

Food- Well.. today was a work buffet in which we said goodbye to a couple of my closest work colleagues for a new team. They will be missed however I know they are nearby for a quick cuppa. Apart from the buffet the rest of the week has been rather good.

Exercise- Only completed it twice this week. My arse looks like a 30 bob cabbage therefore I must keep calm and squat on. Slim in 6 here I come.

Family- Still as daft as a ships cat.

Benny- Stopped farting and as handsome as ever.

My other half- Fascinated with Broadwalk Empire, as am I. Still trying not to burn the mince and keeping me sane.

Shopping- None unfortunately. I’m skint.

To conclude today’s post. A quick reminder really. You can only try your best. Don’t define your past to make way for your future. Define who you are right now and make the most with what you have. You never quite know what’s round the corner. Right Spag bol time… and a cuppa of course. Milky one sugar.

My idea of perfection. Was it really worth it back then?

“Tis better to live your own life imperfectly than to imitate someone else’s perfectly”- Elizabeth Gilbert.

Today’s a hard post to write and one that I hope you will take on board like I’m doing whilst writing this.

I cannot be bothered with the perfect life and going through these counselling sessions is making me see rather quickly that you have to embrace what’s in front of you right now. In fact we all want more however will it make you any happier?

I feel at times that if I could have given my head a shake ten years ago I would have done so however as I’m sitting here today trying so desperately not to smudge my nails whilst typing I’ve drawn the conclusion that being perfect doesn’t necessarily guarantee happiness.

Being perfect won’t erase the condition you’re struggling to come to terms with and as for buying every item under the sun (i.e. clothes, computer games, home furnishings etc.) it still doesn’t quite satisfy the fact that you cannot accept yourself. This is what I’d like to call part time happiness. I’ve been a culprit to this many a time. Now I buy because I want to look good not because there’s problems there anymore.

I’ve come out with that comment today not to make enemies. It’s about knowing that striving for perfection is only skin deep. The message I’m trying to get across is that striving for perfection is going to hurt one person the most. That person is You.

I can say that because I’ve been there myself and to be quite honest it’s rather shit. It’s demoralising and can play tricks with your mind. I cannot be bothered anymore with the whole you say jump and I say how high. Now it’s about thinking what’s going to make me happy and how is this achievable?

Throughout my life I used to put everyone first ranging from friends, family, work, fashion trends however the worst has to be revolved around my medication.

We don’t like taking medication however it’s now become a part of our routine. When my seizures returned in my late teens I didn’t want to be associated with Epilepsy whatsoever therefore did the most ridiculous and stupid thing that I wouldn’t encourage anyone to do.

Upon my return from University I made a move that changed the way I thought forever. I returned home, felt like a failure and this was displayed in my behaviour for the first couple of weeks. This is what perfection did for me. I was at an all time low. I felt worthless looked at myself and felt disgusting like I was never going to achieve anything.

Making the transition between coming home and going into employment I had issues one’s that I didn’t wish to share with anyone. Well before going into the full time work I made a wrong turn a one that has made me question why I thought the way I did back then.

I returned home. My friends were drinking and having a good time. I was back into my circle of friends, spending, in an overdraft and going crazier than usual. They were relaxed and I wanted to be too.

To be like everyone else I stopped taking my meds for a week so I could have that feeling of being normal like I did prior to the seizures returning and you know what when I did it I just felt like a cheap imitation of my so called friends. I wasn’t being true to me, the seizures had returned ten fold for a couple of months following that incident and I wasn’t acknowledging my condition the way I should of. It was like a cry for help.

Thank goodness I saw sense before I allowed that to continue otherwise it could have had an impact on my future.

I appreciate at times Epilepsy can get on top of you however under no circumstance should you without permission alter anything in your life that will jeopardise your health like I once did for that week. Nothing is worth putting yourself through that for the sake of someone else’s opinion.

Everyone in this world has faults and things they want to change about themselves however that is what normality is. Having imperfections is what makes you the person you are.

Some people are worried about their weight, others about their finances, some about whether they’ll find employment or whether they can resolve issues in a relationship. Whatever the scenario home in on the positives to make you see that the positives is what people love about you the most.

If you want to change the negatives then do this in your own time and your own way. There shouldn’t be any pressure there, you are your own person therefore make the necessary changes that’s right for you.

As for the remainder of my week. Let’s summarise…

Work- Not bad, Friday was a belter, had a great time helping the children with life skills, plus I got a school dinner. No pink custard.. shame!
Cooking- Made a rather delicious mince dinner on Thursday even if I do say so myself.
Food habits- Everything in moderation. Had a galaxy today and a KFC after a drinking session on Friday night. I’ve given up on being oober healthy because I always end up cocking something up!
Shakes- None this weekend! Happy days.
Seizures- Nil. Woo hoo. Four and a half years seizure free. So blessed.
Exercise- Nearly killed me today however loved it. Prior to that I hadn’t done any. Things are looking up.
Clothing- Yet another pair of jeans.. and a coat.. and a pair of boots. All for the winter! I can justify myself 🙂
Football (soccer) bets- Tits up.. yet again. I’m gonna pack it in soon (We’ll see!)
Husband- Made a marvellous meal on Saturday, no further tattoos and cannot stop watching the football on TV and it’s driving me insane. The only time I want to watch football is when I’m winning!

To conclude today’s post. Choose yourself. Don’t try to be someone you’re not because no one can replace you.
Perfection is just a word it doesn’t mean anything. To me it’s overrated. To other’s it what keeps them going.

Why do I need perfection? So what I have a condition that I’m now proud to say I’m coping with as I also have larger hips, a mouth that goes ninety to the dozen, flat feet and a farting cat. Who needs perfection when you’ve got all of that?

The Pessimist vs The Optimist

“A stumbling block to the pessimist is a stepping stone to the optimist”- Eleanor Roosevelt.

I think I have reiterated this once before however again I stumble across my pessimism and wonder why I go into these waves of pessimism when things aren’t quite going my way. The only answer I can draw from this is that I personally feel like I want too much from life. Does that make any sense to you all? I truly hope so, if it doesn’t my sincerest apologies.

Let’s explain it like this.

I know life isn’t simple by any stretch of the imagination. Life can be extremely complex a little bit like my brain 80% of the time. Sometimes I think we put so much emphasis on having everything right now that we lose sight of what’s in front of us right now that is the family that love us, the friends who care, the fact that we have to go out and make our own money whilst trying to juggle a condition that’s out of our control.

Now I’m not for one second saying that I want any sympathy here I just think to myself that usually in times of frustration we sit there wherever we may be and ask the same question repeatedly in our heads that being “Why me?”

If I look at tonight’s quote and merge what I’ve just said into the fold it’s safe to say that at the usual “Why me” moments that we get engrossed into this pattern of feeling sorry for yourself before finally getting that pissed off that you don’t know why you were upset in the first place. It’s safe to say that I’ve had numerous and I repeat numerous bouts of pessimism when a shake does take over.

I’d like to think usually I’m an optimist. There’s part of me that would love everyone to love one another, the whole love thy neighbour to come into practice however life isn’t like that is it?

There are genuine people in the world that care for your welfare, that are extremely generous by helping others and sharing their experiences with people less fortunate. As I’ve got older I like all of you reading this will realise that life is far more complex now than it was say 20 years ago.

Everything is about watching your P’s and Q’s, hoping that you won’t offend anybody and wanting so desperately to keep the people (along with yourself) safe from harms way.

Since being diagnosed there was a part of me that thought “Where the hell do I go from here, am I going to be on alert my entire life because I get no warning signs?”

Well the answer is up until now Yes I have been and the word exhausting at times is an understatement because I’m shattered all the time. My medication may be the culprit to this however I don’t think at times I help myself with the whole Optimism vs pessimism. The second guessing can drain you because whilst writing this I know in my head that unfortunately you cannot please everybody all of the time and that includes yourself.

In my eyes I’ve had to have a level of optimism otherwise I wouldn’t have left the house. I would have remained at home watching the world go by and making literally no decisions for myself. Having no warning signs can put you on edge however there has to be a part of you that thinks to yourself why should I watch life pass me by when other people are living their’s?

You make do with what you have and never under any circumstance allow anyone else to tell you differently. If people drop sly digs about you, then rise above because people criticise when their life isn’t running so swimmingly.

Lately I’ve questioned myself in situations and realised that as long as I can tell myself that everything’s going to be fine seizure, shake, worry or not that I have sufficient people around me who love me for me.

They can see the struggle however are so proud of where I am now compared to where I was say ten years ago. They want so desperately to remove this condition that for so long has been a major part of my life however can see that by taking it away wouldn’t actually accomplish anything because the only person that can help me is me.

It’s not about being happy constantly or putting on a brave face it’s about accepting that at times the shit will hit the fan whether that be in the form of a seizure, financial worries, work problems, children’s behaviour the works. This is what life is all about. It’s about hitting your low points to make you see how important the positives are.

As for the remainder of the week.

For three days I’ve gone exercise free and I feel rather grim for not exercising however I’ve been extremely busy after finishing work. Trying to resolve issues with bathroom appliances for our upcoming renovations (don’t ask me when they’re going to take place) is becoming a chore.

My husband is ready to tear his hair out and I’m sick of coming home on an evening to have to listen to an automated service before being told that someone will “call me back” and never actually returning my call.

Food wise. One word to sum this up. Poor. I’m in the process of joining a healthy eating regime at work next week so fingers crossed I can get back into my exercise, attend a couple of sessions and get back on track. The tuck shop at work will have to stop taking my cash and allowing me to be chocolate free!

Tomorrow I’m off to teach children some life skills. God help me. This is from somebody who makes tripping over her own feet a regular occurrence. Fingers crossed eh?

To conclude today’s post. Don’t be too harsh on yourself. Be as optimistic as you can with what you have. You’re bound to be angry about some things however it’s the way you cope with it that’s most important. Know what you want and roll with it. As for the rest well that’s history.