I’m now on my own.

“Change your thought and you can change your world”- Norman Peale

Have you ever thought that by changing your thought pattern can actually benefit your wellbeing? Does that thought come as second nature to you or not? Are you someone who analyses your life so much that you actually think your life is something that it isn’t? Can you ever be content with who you are and what you represent or are you always striving for more?

The mind is complex. It makes you think thoughts you never dreamt were possible. Happy thoughts make you stand out from the crowd. Negative thoughts just make you feel like shit. There comes a point in everyone’s life where you just have to accept that everyone makes mistakes and as long as you acknowledge those mistakes and learn from them then that’s all they are. Mistakes.

Originally I looked at Epilepsy as one big mistake, something that had entered my life without my consent and I wasn’t overly pleased about it. I kept on thinking it was a dream and that when I woke up it would have disappeared. For over 19 years I was like a sinking ship trying to tread above water and not allow the tiredness and the worry to take over. I was sinking so fast I didn’t know how to get back up until therapy came along and made me see sense.

My thoughts were now my own and not the ideas given by my therapists. Although I come across on occasion as having that confident personality and a rather stupid sense of humour deep down I’m a person who is passionate about the people she loves, about remaining well and to have the motivation to carry on and be strong. Epilepsy to me is a bit like going into battle only the battle is not with your condition it’s actually with yourself.

With a condition such as mine some days you have that glimmer of hope and others you are kicking yourself in the arse over something you cannot control. That’s just the way life is. I have come to accept that even without a condition people have these thoughts, the only difference being is is that their pitfalls are with something else.

I sometimes see people walking along with the street who look like they don’t have a care in the world and used to question where I was going wrong. How do I actually know that they aren’t worrying about similar things? Sometimes people look like they have “the life” however that couldn’t be any further from the truth. Everyone has problems.

Life is about being motivated. Baby steps are required in order to succeed. People automatically think that you have to jump in feet first in order to crack any challenge/situation however that isn’t entirely true. Let’s use my shakes as an example. Eight years ago the shakes came out of nowhere. I wracked my brain (and everyone else’s for that matter) for over 7 years to determine what the shakes were. As mentioned in previous posts I even drew my own conclusion. The doctors knew it was associated with my medication however didn’t have a name for it hence me calling them “My shaky bouts”

The shakes were out of control, like the seizures I had no warning sign and the severity altered on numerous occasions. There was no pattern emerging with my shakes. No medication expert could capture my shakes on a polygraph test or through a scan.

Let’s just say it was just me trembling and anxious all in one. Upon contact the shakes made me feel weak and disappointed in myself. I would analyse life so much during my episodes that I would question whether I would be allowed to have a life as these pretty much took over. My medication has played a significant role in the shakes and it got to a point prior to therapy that I didn’t want to live like this anymore.

Nowadays when I have a shake I stop what I’m doing remove myself from the situation and let nature take it’s course. I have learnt to accept that life isn’t mapped out for you. It may be written for you however the way you approach the situation is key. With this situation I just stop for a second, focus on someone or something and allow my body to do what it has to do. I know in my heart that the shaking will stop (as it always does) and if I had a toss up between shaking every few days or having a seizure shaking would come first every time.

Doctors have questioned altering my medication and removing me from Keppra altogether the only downside being is that you may stop the shakes however there’s a greater possibility of the seizures returning. To be honest I would rather use holistic techniques than alter my medication over and over again. Personally speaking unless you are convulsing regularly or have worsened side effects from your medication then it’s not healthy to keep tampering with it unless the doctor can see something that requires urgent attention.

Following my therapy session I questioned whether I was capable of being positive without the help of Bob or my family. My family could see my will to win and were constantly questioning my wellbeing as families do. Everyday felt like a new chapter. I wanted to exercise more, I wanted to go to new places and see more of the world. I wanted to enjoy learning who Sazzle was and put all the bullshit from my past behind me. The trying to be someone I wasn’t was slipping away and it felt like a weight of my shoulders.

The mental battle to be positive daily is something everyone does to an extent. Consciously it may not even enter your head however subconsciously you are trying to be positive and that’s not a bad thing.

I took into account everything Bob had said in our meetings and remembered that there was only one Sazzle out there. The world could only cope with one of me and even when you fall as long as you can get back up, laugh at yourself and don’t take life too seriously then you can be on par with your condition and ultimately you can be happy.

I’ve repeatedly said two things in this blog that my mam has mentioned in the past. The first is that “There’s never a problem that cannot be solved” and the second is “I may never grow out of my epilepsy however I will grow into my life”. I say that to myself when feeling low that everyone has regrets, everyone has achievements and everyone is allowed to be loved.

Maybe as people we analyse things too much. We expect too much from life however as long as we have happiness then what more do you need?

I’m getting there. I’m not where I want to be just yet however I am accepting that Sazzle and her Epilepsy don’t have to be at war with one another. So I shake and convulse, so what. I take medication. Great and? I worry at times… I wouldn’t be me if I wasn’t fretting about something. Life is about having a blast and that’s what I intend to do for as long as I can.

Now I am starting to accept who I am however wish to write about what other things make me tick when it comes to Epilepsy. This blog is not written solely to document my story it’s about giving you a daily update of my concerns and the concerns of other people with the same condition as me. I intend to discuss about topics people are afraid to write incase people view them in a different light.

What people endure when their condition is involved is beyond comprehension, the simple things need to be explained to people who don’t fully understand. Epilepsy awareness is key and we as a group need to show others what we are made of and what changes we have to make to make our own lives easier.

One final saying from me… Let’s do this. Say no to worry and yes to cake (low fat that is). xx

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Goodbye Bob. Hello me.

The final session came ever so quickly and I was gutted at the fact Bob’s sessions were drawing a close as I truly felt that I’d made a friend.

The final day I met Bob was an emotional day. Maybe it was because Bob had become my crutch to lean on and to express my thoughts to for the past few weeks. He was on a different level to everyone else as he was outside of the box. Bob was a man who was precise and to the point. Bob and I had created this bond in which our sessions would consist of me having a power rant and him trying to resolve the issue with advice and a healing technique.

One thing that was apparent was that although Bob could dish the advice I had to draw the conclusion. He was never one to tell me the answer and allow me to walk away without learning something new. That is one of the greatest thing therapy can provide. Therapy can make you walk into a room nervous however when you walk out you feel elated and eager to try the advice you have just been given. That’s on the basis you want to.

Bob and I had the opportunity to reflect on the Sazzle who walked into therapy six weeks previous to the woman she was now and you know what the changes were amazing. Originally I hadn’t recognised the changes I was making however Bob said the breakthrough was phenomenal. The Sazzle I was when the therapy commenced thought she was confident however was also cautious. She was hiding behind her condition and was reluctant to try anything new. She would cry as soon as the word “Epilepsy” was discussed and was a jibbering wreck at the topic of tackling the condition there and then.

He compared the old me with the new me. The new me being a young woman who was coming to terms with the condition she was diagnosed with, the acceptance of the medication she was taking and the realisation that my epilepsy meant more to me than just seizures and shaky bouts.

Epilepsy had transformed my life in two ways. The most obvious was the seizures/shakes and the worry surrounding where and when those would take place along with the medication taking. The other is the changes I have made to not only help my condition but to actually aid my life. The simple things like not putting myself in danger and knowing when to say no is actually more commendable than following everyone else’s lead like I used to. I may never have acted that way if Epilepsy hadn’t came into my life.

I made the decision at any early age that if my medication was going to work properly then I would have to look after myself and ensure I ate correctly, exercised regularly and laughed continuously. On occasion this wouldn’t happen; I would be a person who would be worrying about nothing. I would become introverted and I would analyse whether Epilepsy would dominate my life so much that I couldn’t live it the way I wanted. Bob showed me that I could juggle both.

During my last appointment with Bob I felt a sense of accomplishment that Bob was happy to share with some of his other clients. He told me that if you wanted to change then you could. To hear Bob complimenting me and empathising with my condition was refreshing. To acknowledge my progress with others made me see the changes I was making and that made me wonder how I could help others when it comes to anxiety and assisting others who have Epilepsy in their lives.

I browsed though the notes Bob had written throughout our therapy sessions and evaluated our discussion topics. Happy tears were shed. They were tears of joy as I had finally accepted the one thing I had run away from for so long that being my Epilepsy.

Although I had been seizure free for three years up to this point the worry of fitting was still something at the forefront of my mind. It still is to a degree and no matter how much therapy or wise words are given that will always remain. Don’t get me wrong I will still have my moments of panic however I could see the panic wasn’t as bad as it once was. Do I put this way of thinking down to age? Possibly. Do I accept that therapy/CBT helped? Most definitely.

Bob shook my hand, thanked me for being a model pupil and wished me well. Keep your head held high at all times.

I laughed at the thought of being called a model pupil as I had never perceived myself to ever be one of those. Bob could see the drive in me to succeed and I was overjoyed that I never let him down and accepted failure after that first appointment when he made me cry. I accepted that Bob hit a raw nerve and by me crying this was his way of making me think.

Bob gave me one final piece of advice before he left.

“Never be anyone else, just focus on being you and you’ll be alright, Allow Sazzle to be Sazzle. Never forget who you are”

As Bob always was, he was right. I wasn’t the same girl I was at 8 years old. I was a young woman, a woman with responsibilities. I didn’t wanna crumble anymore so it was about time to say hello to me and to leave the old me behind. Could I do it? Let’s wait and see…

Breathe easy.

Today wasn’t my best day however I did get the feeling of self worth and motivation when I woke up. I got ready for work, I chose my outfit, what makeup to wear and what coat was going to finish the ensemble. I am a woman that likes to be prepared as you never know what the day will bring. I then toddled off to work before sitting down with a cup of coffee and a dose of medication before starting my work duties.

Spontaneity is something I enjoy when it revolves around simple things like going out for a meal or going for a quick drink somewhere. I’m a woman that likes the simple life. As long as a little laughter can be thrown into the mix then I’m champion. Sometimes I cannot cope with spontaneity as the occasional fear of not having my medication to hand still frightens me slightly. I’m getting better at releasing those negative thoughts.

Pre diagnosis I was a little girl whose parents had split up however their permanent separation drove me to want things they never had like marriage and a house to call my own. Post diagnosis I had turned into a former shadow of myself wracked with guilt, worry and uncertainty. Through the art of communication I have since been able to backtrack and start picking up the pieces I let drop for so long.

Throughout this blog topics such as anxiety, medication, friendships and emotions have been discussed however breathing techniques are something I have always found to be fascinating. Who ever thought that breathing properly can change your mood entirely?

It’s remarkable how one moment you are mid shake with no way of looking back and then the next minute you are sitting on the floor your thoughts running away with you and the negativity becoming so great that you draw all the negative points of your life into that episode. When I used to have my seizures the same rules would apply only this time the seizures would make me lose all memory.

Bob had identified my breathing pattern and one day made a comment about the clothes I was wearing.

“Those are tight jeans aren’t they? Why are you wearing a waist belt?”

My initial thought to this comment was “Who are you like you fucking perve? You’re my councillor not my husband”. I could see Bob was taking an interest in my feelings however never imagined for one second he would say that.

“Why do women have to wear such ridiculous jeans, don’t they realise that they are restricting their airflow by wearing stupid garments such as these? It doesn’t help stress at all!”

My thought was howay Bob we are in the 21st century and tight jeans are all the rage. The more the session continued the more I accepted what Bob’s rant was all about.

Let’s just put it this way. I interpreted it all wrong and apologised immediately. Bob asked me this question as he could see that although I was a follower of fashion some of the clothing I was wearing wasn’t suitable and can in times of stress be detrimental to my health.

My first reaction was “What a load of bollocks, how can a pair of straight/skinny jeans restrict my breathing? Is this fella mad?”

No he was completely the opposite.

To my surprise what Bob asked me to do next made me realise that sometimes altering your clothing can have a dramatic effect on the way you breath/hold yourself particularly when you are feeling stressed. He was trying to teach me something.

Bob asked that I remove my waist belt and asked that I sit comfortably upright in my chair. I hesitantly removed the waist belt and followed his instruction.

Bob had established from the very first session that I was a woman who couldn’t relax and could see that my breathing was all out.

I was a person who was stressed all the time. It was evident to see in my posture and my speech.

Every time he would talk to me I would be on alert a bit like a meercat when it’s looking for prey. My head would be up and I would be on edge. For as long as I remember I have never been a woman who can relax, I think I did that because I was pre empting a seizure coming along. I never thought I could physically relax. I enjoy reading the weekly glossy magazines and having a small soak in the bath from time to time however I have never been one who can relax fully.

I keep promising myself that I will take up a new hobby however I have always been distracted during the process. I was never like this until I was diagnosed. The only time I was actually relaxed was when I was sleeping because my mind was active constantly. Jobs would only ever get half done and I would be kicking myself when I had to return to them to finish them off. Why couldn’t I just sit still for once?

I used to be able to relax freely however as soon as medication was involved this changed drastically. Was this a side effect of my medication? Who knows.

I am now in the process of trying to break that cycle and have that me time and you know what I thoroughly enjoy it when it does happen. Ode to anyone reading this: Please just make half an hour for yourself each day, it makes the world of difference!

Anyway back to the breathing..

I sat there upright in my chair (waist belt removed) and started to breathe as I normally would. I had a tendency to keep hunching forward. He asked that I remain upright and breathe from the stomach not from the chest. Sometimes by breathing from the chest is actually causing you more stress than from the stomach. Try it.. Deep breath in and exhale slowly. For me it transported me somewhere else.

He asked that I take a slow deep breath in before then releasing that air slowly from the pit of my stomach and dropping my shoulders whilst doing this technique. He explained that if you are doing this properly my eyes would feel heavier and my body less tense. This is the way I should be breathing on a regular basis.

For ten minutes I was made to do this breathing exercise. Don’t get me wrong my chest was sore and my arms heavy however when our session was over I felt a different person, a more relaxed person.

This was easy why didn’t I not pick up on this sooner. Who ever thought breathing correctly would change my thought pattern when I was stressed out. Bob asked that as homework I continue to do this breathing for 20 minutes per day 10 mins on a morning followed by 10 mins before going to bed.

So I did what my therapist asked and combined by breathing with the remaining awareness session we had. For once I was starting to appreciate that stress can be managed, seizures cannot be controlled however you can make your life easier without constantly worrying about them and as for the rest of life the rest should hopefully fall into place on the basis I let it.

Things were looking up. I’d cried for too long, it was about time the smiles were out and the relaxation began.

Medication.. Medication… Medication….

Right there you have it the thank you’s have been well and truly dished out and I am feeling so much better! Now back to the nitty gritty.

Bob and I were rearing the end of our therapy sessions and I was getting that same feeling as I did with CBT. The idea of Bob not giving me his weekly lectures was starting to make me wary as to what the remainder of my life would hold and whether I could practice his techniques at home and merge it into everyday life.

Bob was like a sponge he taken into consideration everything I had to say and soaked up all the information I gave him. He then implemented my insecurities into awareness sessions that would give me the tools of the trade. It would be those tools that would guide me on.

Whilst Bob was running through these sessions he would always come out with some motivational quote that would keep me guessing till the end of the session. He told me that if you conjure all quotes and place them into your diary they will always guide you in good stead for when you are having an off day.

The quote of this therapy session was:

“It is hard to fail but it is worse never have tried to succeed”- Theodore Roosevelt.

Those words were etched into my mind throughout the session and made me empathise with others. Epilepsy was a place where I had hid for so long. I was always worrying about failing, about letting the side down whether that be with family, friends, work but more importantly myself. Some people think their life is one big failure.

I felt that way when I originally returned from University and every time a seizure/shake came. I would assume that it was something that I had concocted in my own head that would have “set me off” and make me worry.

Bob had tackled the frustration surrounding supposed friends, epilepsy struggles and anxiety however there was one thing that he couldn’t remove entirely from my life; that being my medication.

The word medication is something that you get into the routine of taking. As I have mentioned in previous posts medication is the one thing that can prevent a seizure from happening. The downside being is it can take a bloody long time to find the right medication for you. Medication was a chore in my life. Although it became the norm the monotony of remembering to take it morning, noon and night along with everything else such as my cod liver oil tablets, inhalers, was infuriating.

Doctors make it a point to throw medication at you at the hope that your fits will miraculously disappear. Instead of providing you with additional support and breathing techniques they feel that enhancing your medication dosage will make everything better. Unfortunately doctor that doesn’t necessarily happen. For every pill you take makes you feel lethargic and sick with lack of motivation on occasion. Sometimes it’s the mental hurdle of getting over that fence that gets you through the day.

Bob encouraged me to exercise more, it might make up for the amount of talking I did in these sessions, his wording (not mine) was that I could talk for England. Aye ok then Bob- Funny bugger!

Bob questioned my dislike in taking medication. Now I am going to be honest here I friggin hate taking tablets particularly anything that doesn’t have a sugar coating. They get stuck halfway down my throat and I have a tendency to sound like I am heckling and vomiting at the same time. At present I am on 1250mg of Keppra. I was previously on 3000mg.

Now I know what I am going to say next may make me sound pathetic however I asked the doctor give me larger tablets instead of taking the smaller nasty tablets that got stuck in my throat. What a bloody wuss!

Anyhow Bob could see that medication would piss me off. There’s nothing worse than walking into a pharmacy with a list of medication as long as your arm. Part of me feels that rather foolish with a carrier bag of medication under my arm. I look like I have raided the place. Epilepsy medication, inhalers and the list continues.

Although the medication was a chore I realised that it had become my safety blanket. It was the net that I would fall on everytime I felt that bit low. It was the one thing I couldn’t afford to not take. If I didn’t take my medication the anxiety would get the better of me and the emphasis of whether a seizure would come would take over. Bob could see my worries and address them immediately in this session.

Bob and I completed an exercise in which he removed my medication from the side where I left it. He asked that I leave the room and look around to see if anything was missing. Automatically my eyes veered towards the table where I left my medication. Straight away I asked where he hid it. It scared me.

“Bob give me back my medication” it was like someone who had a drug addiction. I was shouting at Bob like some mad woman. What was I turning into? So he took my medication off me for five minutes, big deal. Bob addressed my fears with me advising that although it’s a necessity to take my medication life is actually more than just medication.

Throughout this session Bob and I felt like we were at one with one another. Apart from the medication shouting tirade I was in a place where I felt comfortable. Bob could see the changes I was making and the fact that I was prepared to accept that no ones perfect. So what if I have a condition? Does this make me a bad person? Of course it doesn’t. Life is full of struggles it’s how you cope with those struggles that people notice the most.

Before I left Bob asked what I was thinking and how I felt after our weekly sessions. I said to Bob that I was rearing towards my goal of self acceptance.

I wanted to be caring about the people I loved and carefree about everything else including my Epilepsy. My Epilepsy would be here to stay however I needed to get on with enjoying life. I was sick of making excuses as to why I couldn’t do things. So what if I make an error every now and again. Life is to short to ponder. It’s about living not making excuses therefore I might as well take my medication and get on with it.

A special thank you.

Before I am prepared to take this blog any further I would like to say a massive thank you to everyone who have given up their time to read and continue to follow Sazzle’s blog.

Two months ago I made the decision that at 27 years old I would document my findings to others who were prepared to listen.

I have always been a lover of raising awareness when Epilepsy is involved and personally speaking I don’t think Epilepsy is raised enough to the general public. A great deal of people don’t understand. For the online awareness groups and support groups across the world my hat goes off to you all. You do a magnificent job to keep us all on the straight and narrow. No question is silly to you guys and you really are a god send to us all.

I feel some people don’t actually appreciate what an Epileptic has to go through and how they have to alter their life to a degree to accommodate their condition. To be brutally honest I was in second minds about writing this blog as I had a fear that my story wouldn’t come across in the right context. I was wrong on that one.

Epilepsy isn’t an illness it’s a condition.

Epilepsy can restrict you from doing certain things in your life such as driving and being able to keep a job as the episodes can take over. I am fortunate in the respect that my seizures are sporadic and as a result I’m now in a position to work full time and live a relatively normal life. I try my utmost to remain upbeat at all times and are currently in a place where if an episode happens it happens there’s nothing you can do about it. There’s nothing you can do about it so best carry on as usual.

As an adolescent I thought there would never be any real positivity in my life as I allowed worry to take over.

I frowned upon my condition and would whinge constantly. Combine whinging about my condition with the usual hormonal spats a teenager can have and you have a concoction for disaster. I couldn’t be fussed with all the specialist appointments, the worries and the upheaval. I wanted to be like everyone else and it took a long time to accept what I was diagnosed with. For crying out loud I would drive myself crazy at times so god knows what my family were thinking!

Looking back it’s understandable to be at war with yourself over a condition you cannot control. Epilepsy can effect you and can make you feel low however you need to try and rise above it and lead a healthy and fulfilling life the best way you can.

From blogs I had the pleasure of reading and people I have recently spoken to about their condition I can sympathise with the fact that their condition prevents them from doing things that even I take for granted. I am in awe of these people as their positivity astounds me and makes me realise that anything is possible. They truly are an inspiration to me and make me see that I am proud that I have what I have.

The world is a very large place and I have been fortunate enough to share my experiences with various people.

I have my usual followers who I tend to speak to on a daily basis that have shown me that there’s so much more to think about than Epilepsy. They have taught me how to eat healthier, gain additional motivation through exercise and one of my friends across the pond has even taught me new words such as nerve plucker and peace out. Their compliments have overwhelmed me; it’s safe to say that I can call them my “twitter friends”. They encourage me to keep going with my blog and have given me the incentive to carry on writing, something I haven’t done since I was a child.

Many are afraid of therapy and look at awareness groups/blogs such as this one to share their own past-times, seizure patterns and medication worries as a way of seeking comfort and gaining knowledge. That is why awareness groups along with blog sharing is so vital in today’s society. Being united by helping parents, children, teens and adults cope with this condition is crucial as without support we have nothing.

Thank you again everyone for your kind words, generosity and support. Let’s keep raising awareness if not for ourselves but for the people we know and love.

xx

The right friendships can be a blessing.

“To have a good friend is one of the greatest delights in life”- Ralph Waldo Emerson.

This is so right. To share your ups and downs with a friend is vital. Writing this is quite difficult for me so please bare with me. It’s taken a long time to say it.

At present I have a handful of people that I can genuinely call my friends. People may ask why I write this post because this may have nothing to do with Epilepsy awareness. I feel that it is an essential to do so as this is one of the issues that has aided my recovery and allowed me to find the right people to promote epilepsy awareness to.

My friends are those that are prepared to stand by me through thick and thin and are prepared to give me an honest answer when I don’t necessarily want to hear it. It’s those friends that want to be there and aren’t just causing trouble to make themselves the forefront of your life.

Like my family my friends that I currently have are the ones who want to see me succeed and want what’s best for me as I do them. The love I receive from my friends is one that cannot be destroyed and is one that I will treasure for the rest of my life.

Anyone heard the popular saying;

“Keep your friends close but your enemies closer”- The Godfather Part 2.

So have a million others. I think it’s so true.

Maybe it’s because for the majority of my life I have constantly had battles with myself as to who my genuine friends are. No matter how carefully your choose your words they always end up getting twisted by others. I was always one who never differentiated between the two. It was only when I went to therapy that my eyes were well and truly opened.

Bob had tested my strength as far as my Epilepsy was concerned. He had placed me in a room with four chairs to which I had to let go of my past and focus on my present. This was a present issue.

So far I had written a plethora of words to describe my love and hatred towards my condition and I had managed to explain to my therapist that I allowed worry to take over my life to the point where I didn’t realise who I was anymore. I had been challenged however Bob hadn’t managed to tackle every aspect of my life. We had only had three sessions so far; Bob knew enough about me to gage an understanding of my worries however our cards weren’t fully laid on the table.

This session was one that funnily enough would make me see that being popular isn’t always necessarily the best option.

As a child I have always been someone who would do anything for anyone much to the dismay of my parents who could see that on occasion I was only hurting myself by running after them.

I was under the assumption that your school friends or the people you thought were your “best friends” would remain that way for the rest of your life as you knew them the longest. How wrong was I to presume that this would be the case. To some it may be however I think differently.

I am not saying I am perfect by any stretch of the imagination however if I see someone I care for in need then I have an urge to help.

I usually drop everything I’m doing to tend to that person to ensure their safety and wellbeing is ok. My mother always said there is never a problem that cannot be solved and I was that person who tried her utmost to solve everyone’s problems. Maybe I did this to deviate from my own condition; something I wasn’t prepared to resolve fully until now.

Bob asked my friends involvement in my seizures to which I replied only a handful ever bothered their arse to check that I was ok. Some friends asked me and brushed it off like it was dirt on their shoe, others were prepared to listen. I appreciate that people have their own lives to lead however I was showing a keen interest in theirs and to them my problems weren’t a patch on theirs.

Bob asked why I wanted to be so popular so badly. Why did I need so many friends?Was it because I wanted to be liked by others or was it incase I took ill there would be people around me to assist?

I responded by saying that I wanted people to care. I wanted them to care about me as I did for them. I wanted to be the person they could come to and vice versa. Bob held his head down and said the following:

You will never be liked by everyone. There will be people that may be jealous and there may be people who do not understand your passion for life. Everyone is different and that’s normal. You should never go out of your way to please anyone and you sure as hell need to make yourself number one priority.

Bob was right.

My health and wellbeing should come first along with the love of my family and the little friends I had. Why did I need to be Mrs Popular?

Yes it’s brilliant to have friends who see you every now and again however if they don’t show you attention again is it really the be all and end all? Are these friends going to be worrying about me all the time? Of course they aren’t and that’s understandable.

Bob could see that the word “friend” was something I was trying so hard to be to so many people. Why was I going all out to make others like me? Is that desperate? Of course it is and on occasion that was what I was doing. I was walking on egg shells with some friends for no apparent reason going all out for nothing in return. The friends I have now are prepared to meet me in the middle. They care and that’s the most important.

I was one to assist at all costs. To this day I like to chat with others and form new friendships. I think it’s lovely to be able to associate with others that have similar attributes to you. Some people that I have met on here have children, others live outside of the UK and others just want a chat and that’s fine by me.

I feel that I maybe have more twitter friends on here than I do at home. People may perceive that as not being true friendships however we would have to agree to disagree. We all have something in common. We all want to raise epilepsy awareness.

Bob asked that I jot down what the word friend and what this means to me. My response to him was that a friend is there for you when the going gets tough. They don’t bail when times are low. They love you for you.

Whilst writing this I could see that my views on friendship were changing. Bob’s words were getting through. Friendships aren’t all the same they are different. If people don’t like you then fuck them they aren’t worth your tears? My health is more important than somebody who wants to talk behind my back. You can never prevent that from happening. People talk. I have myself when someone has wound me up.

You have only one life and I couldn’t be bothered with all the dead wood hanging around. It’s not worth it.

Bob couldn’t help but question why I was putting myself in the firing line. So what if someone doesn’t text me? If my true friends aren’t in contact is that necessarily a bad thing? Of course not. Let go of the insecurity because we can always chat later. It’s not a problem.

To this day my consultants and I believe that stress is a potential trigger to my seizures. My shakes are an entirely different entity however they too can sense when I am anxious. So one of the requirements to aid my condition. Stop panicking!

It was about time to change. If you don’t like me then that’s fine. Let go of your past and focus on your present.

My present was that I had everything to live for. I was seizure free and needed that wake up call. Bob was giving me that wake up call.

What is the worst that can happen? If people don’t like you then tough. Focus on you and you will be just fine.

To all my best friends thank you and to all of my twitter followers thank you for your support. Keep chatting 🙂

Where do I go from here?

“Knowing is not enough; we must apply. Wishing is not enough; we must do” – Johann Von Goethe

Therapy had allowed me to enter a brand new chapter of my life. A chapter that I had never dreamt would be possible. When someone puts you into a position that you cannot get out of what must you do? Do you sink or swim? This applies to anything. Give it a good go. Try your best.

Bob had thrown me into the deep end; All I could do was swim, because I would be damned if I sank. If I was going to carry on with this therapy I didn’t intend to do a “half arsed job”- I say this saying quite a lot.

For all those who have never heard of that saying is that if I’m going to do it I’m going to do it properly.

At the time of my last appointment I wasn’t at peace with myself.

If anything I was constantly battling the one thing I thought was a demon in my life, that was my Epilepsy. I wasn’t focusing on the advantages that life was bringing such as love, support and happiness I looked at my condition as dull, scaremongering and unjust. That was not a way to live life, at times I felt like I was just existing.

When I was originally diagnosed I was a youngster a girl who didn’t understand what this “thing” was. I associated adults taking medication because of several health problems not a young girl who was taking it to help regulate her seizures. The only medication I had ever taken was an inhaler to help stabilise my asthma. Everyone I knew had asthma but only the minority had Epilepsy.

The last appointment with Bob allowed me to open my eyes and see life for what it was worth. It made me see that my epilepsy wasn’t something to be fearful of, in fact it was something that has now geared me towards a better life. Let me explain.

My third appointment with Bob was a one in which I was asked to list the pluses and negatives of my condition.

I would be asked to compare notes at the end, i.e. we would draw that one conclusion about my Epilepsy.

By writing this small dossier this would enable me to see in writing the likes and dislikes of my personality. I started to write a list, one category would be the dislikes about my condition, the other would be the alterations made to accommodate my epilepsy.

The dislikes:
Taking medication on a daily basis
I am anxious the majority of the time
Wishing I could drive
Constantly worrying when the next seizure/shake was going to arise
What the severity of the shake/seizure would be
Where would this episode take place? Would it be in a supermarket/shopping centre?
Would I be alone?
The fear of the unknown
The upset brought onto my family because of this episode
The restrictions I had when my condition was involved

The plus points that Epilepsy has brought:
I hardly drink as I am concerned the more I drink the more I cancel my medication that can lead to a seizure/shake. This could also lead to other things. If I am forgetful because of drink could this lead to tricky situations I cannot get out of?
I don’t have to drink to have a good time
I don’t smoke because I am asthmatic
I try my best to look after myself
I try not to let my seizures dominate my entire life.
I eat relatively healthy and remain active, this helps my frame of mind and alleviates stress
I am cautious when out making sure I only take the bare essentials
I don’t drive because there is the possibility that if I was to have an attack I may injure myself/others
I try to remain positive
I am a helpful person always trying to assist others. I did that more since diagnosis.

The more I was writing the more I could see that my condition allowed me to have more of a life than the dislikes I had written prior. So no I wasn’t allowed to get myself blinding drunk and stay out till late having a wail of a time however I was cautious and didn’t like the idea of being in situations I couldn’t get myself out of. Bob made me see that it wasn’t all bad.

I highlighted a time to Bob when I was 18 years old when I couldn’t categorise my advantages. The seizures had returned and I wanted to let my hair down in a nightclub. I had been socialising with friends from 7.30pm till 3am.

I did the complete opposite, I drank to excess without my parents knowing before returning home with pizza and chips in the early hours of the morning. I was a mess and my mother was displeased. I was told to take paracetemol, drink a pint of water and go to bed. I knew I would be getting told off the following morning.

The following morning I woke up to find myself on the floor face bruised, tongue bitten and my mam sobbing. I had had a seizure all because I allowed myself to get rat arsed, I had allowed my stupidity to spill onto my mothers shoulders and it wasn’t on.

Bob asked how I felt to be on such a high to hit this almighty crash? I replied by telling him that it was the worse feeling in the world. My mam had nurtured me growing up and had always told me to be careful when I was out. She would remind me every time I was out to prevent this from happening. I should have thought about her feelings before my own.

I was wasting a day by getting in this state. I wasn’t happy. My night was a blur and I was drinking excessively to hide the insecurity of my seizures returning. I wasn’t an alcoholic, I wasn’t dependent on drink because this was a first for me and I swore never to allow myself to be THAT BAD. Don’t get me wrong as I have got older I have had a couple of mishaps but nothing that that extreme, not to the point where I convulse. It’s not worth it no matter what age you are. People make mistakes however when you keep on making the same mistakes you cannot keep blaming others. You know fine well what you are doing.

Bob could see my frustrations and asked where we go from here.

Bob asked how I felt following this discussion along with our previous meetings. I told Bob that I had started to want what was best for me. I could see that I had restricted Sazzle from enjoying her life. I had hid so much behind my condition’s shadow that I lost all sense of who I was. I had hid behind debt, the occasional drink, taking medication and negative people to try and establish who I was when in fact I was just a young adult who wanted to be happy without all this unnecessary worry in her life.

I told Bob that I needed to apply a strategy something that would make me appreciate my condition along with everything else in my life. Bob asked if there were any other topics I needed to get off my chest. I informed Bob that there were a couple more. One of them was people. Bob knew that I had a tendency to please others to the point where I would make myself unwell.

Bob asked me how I would feel having a conversation about these “people”. I was on a roll. My acceptance towards my fits were evident. It was now a matter of letting go. It was retaining my true friends and letting go of everyone else who made me feel uneasy.

I asked myself. Could I handle the next session? What would Bob’s words be this time? Heaven knows, he was a man with a great deal of surprises.

Four stages of me.

I need to make you all aware before you read this post that this post may divide you all. The process I was about to undertake is something that has changed the way I perceive my condition. What I am writing is my feelings and my feelings alone. It may make you look at your condition/your loved one’s condition in a different light.

Walking away from my initial therapy appointment with Bob made me question who I was and what I represented. In fact I had no clue. My mind was weighted down by Bob’s words. My reaction said it all.

I was gobsmacked and the more I said the words “I have lost my identity and hid behind my condition for so long” the more it sunk in that this was exactly what I was doing.

Like me my family were in unison with what Bob had said and was eager for me to see what the upcoming sessions would bring. The sessions would continue to which I would be asked to put myself into scenarios that would test my perseverance, patience and confidence. The therapy I previously had was a push in itself however the therapy I was due to get with Bob was in a separate league.

I questioned my ability to progress with Bob as I thought this man may push me too far. He may push me in another direction and make me go to a place where I would hit the ground harder than ever. Part of me thought I could go into full blown depression. My parents were worried however they knew that I had to make my own decisions. I had to be in control and if the negativity overwhelmed me too much then I would have to pull the plug on these sessions.

The second appointment with Bob was one that would bring me out of my shell and give me the hard exterior I am trying to obtain. Bob knew how to push my buttons and thought it would be beneficial to face my fear head on. Only this time it wouldn’t be through the art of listening he would do an exercise that would give me the incentive to move on. During this session I had to dig deep and go back to the age of 8, only this time there would be a twist. I would have to relive my childhood insecurities.

At this stage of my life I had gone just over two years seizure free, my medication had remained the same and I was a lot older now. Let’s go back to that therapy session. I knew I had to change not just for my family but for myself. Challenge was definitely the word to sum up what happened next.

Bob asked me how I felt following our latest session to which I responded by saying that he had summarised my life in one session than I had in 19 years. Bob asked if I was prepared to take my fear to another level and so we did just that.

Bob asked that I stand up so he could place four chairs in a square. All chairs would remain empty and he would sit on the table nearby i.e he was an outsider looking in. The four chairs would represent my life. The first would be me at the age of 8. The second would be me as a teenager, the third would be my actual condition and the fourth would be me now.

What Bob wanted me to portray was my feelings at all four stages of my life. He wanted me to behave the way I would at each age. He would be the one in the passenger seat asking the questions to me and he wanted me to be honest about the way I felt at each stage of this process. I was in the driving seat, bearing in mind I have never driven before.

So I went, to the first chair. The childhood chair.

Bob asked me to analyse my life and to explain what I felt like when I was diagnosed. I explained to Bob that I was a child and I didn’t know what was happening to me. All I wanted was to play, enjoy school and make new friends. The only down side being is that I was worried about how my friends would react to my condition. Maybe they didn’t want to hang out with a little girl with problems. I was always second guessing them. The epilepsy prevented me from having that childhood in effect it took my childhood away from me.

After careful questioning from Bob I explained that the only plus point was getting presents from my family to distract me from the condition I had. I so wanted answers however never fully got them. When Bob asked what I would say to my eight year old self now I told myself not to worry because it’s not as bad as it seems. Whilst uttering those words I burst into tears and was then moved to the next chair.

Step 2- The teenager.

By the time I was a teenager I was in a place where I had allowed my epilepsy to take over my life. I hardly drank and never smoked. I was on medication 24/7 and I was sick of the hospital appointments, they would get on my wick and angered me to the point of no return. All I wanted was to be normal and like everyone else care free and not complicated. I had my family’s support however I didn’t have my own support. Bob asked me what I would change to which I replied saying that I wanted to be like my friends. I wanted my friends to like me. I didn’t want restrictions I just wanted life to be simple. I wanted people to see the way I was feeling. This stage didn’t upset me until I reached the third chair. This chair was definitely the hardest.

Step 3- My Epilepsy.

Bob asked that I become my condition. At first I didn’t know what he meant. He wanted me to talk as thought I was the condition and not the condition dominating me. He would ask an erray of questions to my condition that I had to answer. It was this stage that really opened my eyes. I felt like I was being hypnotised (even though I wasn’t). The words that would come out of my mouth would make me see that having epilepsy was something I had to come to terms with.

Bob would ask why the epilepsy had entered my life. I responded by saying that I wanted to find a warm base, I wanted to talk to the person who I had went inside of and the only way I could communicate was by shutting Sazzle’s body down and forcing her to fit/shake. This was all I knew as a condition and I didn’t know why Sazzle didn’t like me. I was only trying to help her. I wanted (i.e the epilepsy) to show her that I care. I didn’t want to do battle with her anymore. We had to be at peace with one another. Before I could elaborate anymore Bob moved me into the final chair.

Step 4- Me in the current day

Bob asked me to summarise what I felt at all 4 stages. I asked what he had just done to me. Bob said that he could see my distress and could see that I wasn’t coming to terms with my condition. In order to move forward I had to accept what I had. I couldn’t run no longer.

I had to appreciate that epilepsy was a part of my life and unless I could tolerate this condition and not be at war with it then my life will never be satisfied. I agreed whole heartedly with Bob to which I asked why my epilepsy was here. Bob told me that I had answered my own question in that third stage. Epilepsy is not here to get me, it’s just here. I could analyse my life to extreme however it wasn’t going to change anything. I would still be epileptic.

Before Bob went he asked me to reiterate these feelings in my mind over again before our next appointment. When I walked away I felt like I had won a war. A war with myself. In order for me to be happy in my own skin then I would have to love me. Cliché as that sounds it was the truth. I was never always gonna like my epilepsy but my condition and I were gonna have to be civil with one another because it wasn’t going anywhere in a hurry.

Standing up to worry.

So we are halfway through the blog posts about overcoming worry, anxiety and coping with epilepsy.

So far you have seen the worries that I’ve had to face and heard of the people who have seen it all. We have identified the problems. Therapy was a success before the wedding and I managed to sort of face up to what I had been diagnosed with. My partnership with my husband was flourishing as was settling into my new home however I wasn’t entirely satisfied.

People may think what I’ve just said is ridiculous because to a vast amount of people I have everything so why worry anymore?

The answer is. I got used to worrying. For the majority of my life I have worrying beyond my comprehension. It is something I’ve just got used to.

My worry had ranged from people not picking up a phone to that manifesting into me thinking they didn’t like me. On the other side of the spectrum I had questioned my ability to hold a job with a medical condition and wondered whether I would lose my sanity worrying constantly about my seizures/shakes. I felt like I had rewound 16 years and was back in my bedroom at my mam’s house questioning my future.

As mentioned I would recommend CBT to all. CBT can boost your confidence and allow you to face your fears on the basis you allow that to happen. CBT had changed my life considerably however the problem with me was that old habits died hard and I couldn’t shake them off (pardon the pun) therefore I sought additional therapy provided by my employer.

Compared to the waiting game I had with previous therapy I managed to see this new therapist within a week of submitting my application form. I was contacted over the telephone to discuss my concerns. This conversation lasted an hour with all my details remaining confidential to this private agency. When I came over the phone I uttered a sigh of relief and went about my evening as normal.

I questioned why I would want to go back into therapy. Prior to getting married I knew I had changed into a newer version of me and I promised myself that I would overcome anything without the help of therapy. When I left CBT it had dawned on me that I had nothing to worry about anymore. A life without some form of anxiety was something I was unfamiliar with.

The day came when I was to confront this new therapist. Out of respect I will not give personal details of this therapist however will refer to him as Bob.

My initial meeting with Bob was one filled with apprehension. I think I am quite a good judge of character and Bob was unique from the get go.

I had heard so many rumours about the agency he worked for that I was intrigued to find out more and to see how this person would play a major role in my life.

Bob was an individual like many in the medical profession who would arrive with the usual fact based worksheets, jotter and stationary for him to make the necessary notes. My first appointment with Bob is a one that unlike the therapy beforehand made me question my life in a different way, in a way that caught my attention and made both myself and family realise that he meant business.

Bob asked me what my fears were. He wanted me to explain in detail what was upsetting me and why I allowed my condition to take priority before anything else.

I explained to Bob that since diagnosis I have been a girl who has never allowed myself to let go of her past and focus on her present. I have always had the fear that the past would come and bite me on bum. Whether it be a fault of others my epilepsy to everyone was a prominent figure in my life.

My condition was at the forefront of everything I did and like before was the first thing I thought of when I woke up and the last thing I thought of before I went to bed. Just before the wedding I thought contrastingly however now my project was over this pattern had emerged. What I wanted was to release that stress from my shoulders, be a newlywed and enjoy my life with my husband.

Bob asked me what I thought about my life to which I said I was relatively happy.

Bob said the very words that would make me break down and cry uncontrollably for 20 minutes. He told me that from my explanation of my feelings that I had hidden behind my epilepsy for so long that I didn’t know I was anymore. I had lost my identity to a condition that I couldn’t control. I had allowed my condition to rule on so many occasions that Sazzle was no more. I was a figment of my own imagination. I was oblivious as to what my life SHOULD be like. I was the one who was not allowing myself to live my life, not the epilepsy.

To hear those words from someone outside the box (when I say “the box” I mean immediate family, friends, colleagues etc) was hurtful and refreshing all in the same sentence. I always knew that there was something preventing me from letting go. Bob had hit the nail on the head. He was to the point and he said it in a way that made me see clearly.

I was told that my sessions would last a period of 6 weeks. I would see him every Wednesday for an hour every week and that’s all I needed. Bob could see that he had pushed a button and I was ready for more. He told me that if I wasn’t prepared to embrace this new therapy then we might as well say our goodbyes now.

Bob could see something in me as I could in him that wanted me to do well. He could see that I was sick of putting up with this shit and that my life would remain stagnated until I was accepting of myself condition, faults and all.

I walked away from that appointment and sat in the toilets for ten minutes crying before breaking my heart to my husband, family and friends. Let’s just say I was crying out of relief. They were happy tears, not tears of sorrow. Bob could see something that I couldn’t. I wanted to go to those sessions to see it there was anything else he could unravel.

Epilepsy is a condition that others should be aware of. Medication, therapy, testing at the end of the day it’s all trial and error. We all may never find that solution to rid it completely however when we all club together we are making a difference right there. We are helping one another.

Bob had my attention and I was eager to see how the remaining 5 weeks were gonna pan out. Let’s put it this way I thought I needed tissues after this appointment I would need an entire tissue aisle for the ones yet to come..

Goodbye Miss.. Hello Mrs.

Therapy was coming to a close and I was prepared for what life had in store. The CBT I had just undergone was marvellous to say the least. I was content. I knew I needed to grasp life with both hands and I was in a position where I was feeling comfortable.

Therapy was something I committed myself to for five months. Therapy had become a part of my life, I mean I had it in my life for over 5 months. Like my medication I was in a routine with it. I had included therapy into my journey and it was extremely difficult to break away from it when the day came.

There is a saying that makes me question my own actions.. that saying is:

Look at your problems as problems and they’ll continue to hold you down. See them as blessings in disguise and that’s what they will truly become.

My final session with my therapist was one that would be memorable. She sat me down with the same questionnaire I had completed six months previous. The scores had diminished and I was in the “normal” worry category.

For someone who was due to get married in a week’s time this was a positive thing. My outlook on life had changed in 5 months. I couldn’t be arsed with the concerns my seizures had to offer. I couldn’t be bothered with the worry. I had worried for over 19 years and I was in a position where I was physically tired, drained in fact.

I always advise others that life is what you make it. Unfortunately there are going to be occasions where you are not in control whether that be because you have been made redundant at work or a seizure had arrived at the worse time imaginable. You are in control of your own destiny to a degree. As Tom Hanks said in Forrest Gump. Life is like a box of chocolates you never know what you’re gonna get. Whatever chocolates you do get you have to accept.

Life is like a rollercoaster. You’ve just got to ride it unfortunately. It has it’s ups and downs however that’s just the way it is, that’s to be expected. You can’t pretend to be someone you’re not because then you’re only fooling yourself and that’s not the way you should be.

Never kid a kidder. I know this because I have tried it numerous times before and it gets you nowhere. The best thing to do is to just be you. If the people you perceive as friends don’t wanna come along for the ride then they were never friends at all. They aren’t worth your tears.

My parents and I used to joke on and say that Epilepsy came my way because I was the only one in the family strong enough to cope with it. Maybe they were saying this at the time to make me feel better however looking back it’s commendable for a parent to try and take that worry off a child’s shoulders. They did that because they knew deep inside they couldn’t control what was happening to me. It was the only thing that they couldn’t make better with a dose of medicine.

The wedding day came and I was in a complete mess. I hadn’t slept a wink all night and I was reading my epilepsy diary to see how far I’d come.

I was running around stupidly around the home. I was tense. The only time I was ever this tense was when I was convulsing or shaking. The thought of being a Mrs dawned on me that I was now an adult. I wasn’t a child anymore. The thought of this hit me like a ton of bricks. An adult? I felt like a teenager not an adult getting married. This was absurd. It was made even more realistic when I was looking at myself in the mirror, wedding dress on and medication in the side pocket of my dress.

I decided to wait until after the wedding to consult neurology and ask that my medication be reduced. After deliberation with my partner I decided that we would wait till after the honeymoon and then consider making that important change. I had been fortunate to go two years seizure free and I thought it was necessary to walk down this new road. If I was going to be a Mrs then I wanted to make other changes in my life to, the main one being my medication.

The wedding went swimmingly well. For all those who are following Sazzle’s blog on twitter you will have already seen the picture on my twitter page of my husband and I laughing on that unbelievable day. The sun was shining, it was one of the hottest days of the year in the UK and I felt blessed to have my husband, family and friends all there to celebrate this momentous occasion.

My husband decided before my walk down the red carpet ( we got married in a hotel not a church) that he play the theme tune of Jaws as an icebreaker for all guests. You guessed it the “der der der der” – my rendition of the jaws music. The cheek of him!! I saw the funny side of it.

Everyone in the room was in hysterics because that song represented the upheaval in my life. I was a nightmare when I was angry and quite (I emphasise the word quite) bossy on the build up to the wedding. No bridezilla though.

Therapy had been a success and one I would recommend to all. With therapy you have to go in with a blank canvas. With the remaining space you have the freedom to draw a small picture and realising that you have to come to an agreement with yourself to be satisfied with your lot. The goal is to accept yourself and to appreciate that life is precious whether you have a condition or not.

With therapy you are allowed to return within a year should you have growing concerns about your anxiety. I didn’t want to return to my therapist as I thought I was cured.

The worry was would this anxiety return after the wedding day.

The honeymoon was a place for my husband and I to go back and look at what we had achieved in such a short space of time. We were both adjusting to a life together. The one thing that would make an ugly appearance every now and again was my negativity towards my condition when I was feeling sick, tired or having my shaking episodes.

Once the wedding was over I had time on my hands. I had pre-empted what was going to happen next. I would start worrying again only this time it wasn’t a small lapse it was a one that I couldn’t kick myself out of. This was not my therapist’s fault that I was in this frame of mind. She had given me the tools to do the job. Unfortunately I was so wrapped up in being positive that I thought I would never come down from cloud nine. I wasn’t being realistic with myself. You can’t be happy all of the time.

I didn’t want to see this therapist I wanted to tackle my worries myself however this wasn’t going to be easy. Was I worrying because I had gone seizure free for so long? Who knows. All I knew was that I just knew that I wasn’t prepared to watch myself crumble again. After 3 months of beating myself up I introduced someone new into my life, this person would so happen to be another therapist I was introduced to at work.

This man was a person who took CBT to a brand new level, this man was someone who would give me the guts to stand up to my epilepsy once and for all. A man telling a woman what was wrong with her? I was unsure. Would he be as effective as my last therapist?

Like my previous therapist this person specialised in CBT too however had a reputation for being to the point. I didn’t want a re lapse of my old neurologist asking if I enjoyed being epileptic.

This new therapist was renowned for being successful and making people feel good about themselves however was told that the six weeks therapy I would undergo with him would be the hardest 6 weeks of my life.

Was this too good to be true? Was it really going to be so difficult? All I knew was that people had recommended this therapist to me. He was the only person who in the medical profession who really stood out. He was a one who would ask me questions far deeper than my previous therapist.

Could this man give me the talking to that I really needed? Could he be the one who would stop my anxiety once and for all?

Let’s just wait and see.