Epilepsy Ruined my Life

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Epilepsy is like having a devil walking beside you silently wherever you go, like a monster waiting to wake up. You never know when it will rear its ugly head and your world will fall apart every time it does.

If you’re like me then you injure youself during them regularly. A never ending stream of bruises, strains, sprains, cuts, scratches and broken bones. Sometimes I was have huge seizures every day, sometime three of four one after the other. I become so ill I can’t leave the house, exhausted by the seizures and paralysed with the exhaustion. This in turn becomes a form of agorophobia, a severe anxiety disorder characterized by anxiety in situations where the sufferer perceives the environment to be dangerous, uncomfortable or unsafe.

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Leaving the house now becomes the biggest, hardest thing in the world to manage. We live in a world made too easy to give into the agorophobia, I’m able to order everything I could ever need from the relative safety of my home and only need to fight the stress and anxiety for doctors and hospital appointments. Medications for epielpesy are awful. Off course some stop or at least manage the seizures but most just leave you in a constant ‘zombie’ like state. You stop caring, your will to get up and do something is gone. Add anti depresents in and then pile on anti anxiety medications on top and suddenly your life seems worthless.

I didn’t ask to have a life altering ilnness. I didn’t ask to walk under the constant shadow of when the next seizure will hit, how bad it will be or whether it will put me in the hopsital. I didn’t ask to wonder if the next seizure will be the one to strip away my life completely. I didn’t ask to be basically homebound, to not be able to work or even sit a driving test. I didn’t ask to be pointed at. To have people say ‘oh shes probably drunk’, ‘stay away from her you dont know if its catching’, ‘shes such a freak’.

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You learn to live in constant fear of when your epilepsy will strike next. Now there are monitors to help. A safety alarm can be fitted in your house for if you need someone. These cost YOU, so if you’re poor like me then it’s a no-go. The market is being inundated with alarms and products to make suffers have a better life but again they cost YOU.

One of the scariest things for me anyway, besides the actual seizure is memory. Your memory can be basically classified like this:

Procedural memory Activities which are carried out almost without thinking, for example, riding a bike. Semantic memory Knowledge that has been acquired but we are not sure when, for example, capital cities. Episodic memory Personal memories of everyday life.

And Epilepsy messes with them all.

Epilepsy does not stand alone just filling your life with life threatening seizures it drags along all sorts of other crap with it.. Anxiety, stress, memory loss, motor function issues, speech problems, attention problems, low mood, lethargy, lack of motivation, sleep disorders ranging from nightmares to complete insomnia and the list could go on…

Epilepsy means that those simple things you took for granted; swimming, taking a bath, cooking.. Well forget it. Or be supervised. These are now deadly, and trust me when you think your alright but end up with burns that put you in the hospital, or have your husband drag you out of the bath where you’ve sunk to the bottom in the midst of a seizure… It’s no longer worth the risk. So with Epilepsy get used to living your life under constant supervision…

Epilepsy is a serious neurological condition where there is a tendency to have seizures that start in the brain. There are over 40 types of epilepsy, so just knowing that a person ‘has epilepsy’ does not tell you very much about their epilepsy and the type of seizures they have. Anyone can develop epilepsy, it happens in all ages, races and social classes. Epilepsy affects more peole than you know! Epilepsy has no cure…

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In memory of Jazz

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Yesterday (Sunday 17th May) I lost my beloved dachshund, Jazz. And then this morning I woke for the first time without her.
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My little Jazz is with me all day, every day. We spend every minute together. Literally!

Early on we found she was sensitive to my epilepsy and changing moods.  She became my constant companion and so the prospect of being without her hurts.

A lot.

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So now I need to learn to be without her. And i need to find a way to remember that she’s no longer in pain. Wherever it is they go she’s happy there.

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So whilst I spend a while in my thoughts of my happy little doggy I leave you with some pictures of her.
To make you smile.

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I’m Cheap!!!!

For those that know me this will come as no suprise but I’m cheap.

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Yeah, one and the same thing right?

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This is what I like to see. This is the price I like to pay. I don’t want to be cheap and cheerful, for a change I’d like to be rich and miserable.

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See above picture? I would be so HAPPY. I LOVE books!!!!

Which gets me back on topic.

I’m actually paying for this book!

http://www.amazon.co.uk/Electricity-Ray-Robinson-ebook/dp/B003GK22L6/ref=sr_1_4?ie=UTF8&qid=1410463860&sr=8-4&keywords=ELECTRICITY

Now, obviously I haven’t read it yet but expect it soon!!!!!!

Product Description

Lily’s epilepsy means she’s used to seeing the world in terms of angles — you look at every surface, you weigh up every corner, and you think of your head slamming into it — but what would she be like without her sharp edges? Prickly, spiky, up-front honest and down-to-earth practical, Lily is thirty, and life’s not easy but she gets by. Needing no-one and asking for nothing, it’s just her and her epilepsy: her constant companion. But then her mother — who Lily’s not seen for years — dies, and Lily is drawn back into a world she thought she’d long since left behind. Forced to renegotiate the boundaries of her life, she realises she has alot to learn — about relationships, about the past, and about herself — and some difficult decisions ahead of her. ‘An eviscerating debut novel . . . Its fast, furious plot, kaleidoscopic imagery, blunt observations and a wry, ingenuous, hugely compassionate heroine make Electricity a breathtaking assault on the senses’ Guardian ‘An energetic debut, bristling with talent . . . It’s black, savage, funny and rather uncomfortably haunting’ The Times ‘Ray Robinson’s Electricity is a thorny, uncompromising novel, with attitude. It is also — thanks to Lily O’Connor, its sharp-edged, hard-living, tough-talking narrator — mesmerising, uplifting and unexpectedly tender’ JIM CRACE
I’ll let you know how it goes!!!!

Thursday 07 August 2014

You can barely move nowadays without running into someone campaining for something. Adopt a dog, run for cancer… The list goes on and on. Now don’t get me wrong, all of these things are necessary and good things but when I have someone knocking on my door, and its always as you’ve just sat down to eat, then just once I want it to be a person telling me of a new initiative for Epilepsy research or a new program to help with Depression and Mental Health Illnesses..

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I’ve suffered from Mental Health Illnesses since I was a teenager and for years have been up and down, and on and off medication.

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Sitting in the doctors office at 27 years old and being told that the four visits to the neurologists in the previous five years had all been wrong was unreal. To have the neurologist explain to me that without a full scan, she couldn’t be certain but that she was convinced that not only did I have epilepsy but that I had probably had in one form or another for my entire life and that I took three separate types of seizures… well it was surreal to say the least.

My shocked expression had her calling my husband in from the waiting room where she proceeded to explain to us the various tests that would be upcoming, the appointments I’d have to go to and the tablets that she wanted me to take starting that day I was lucky to have my husband there. He listened and took it all in. I just sat.

Now it shouldn’t have been a surprise. My father had epilepsy, two of my half sisters, both from opposite sides of the family also had it as did many of my extended family.

It had been suspected a number of occasions over the years, but hearing it confirmed made it all seem that much scarier.

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So what had landed me in that office? The previous week I returned home on my lunch break, the day was sweltering hot and splashing water on my face was the last thing I remembered. Becoming aware again, I realised I was on the floor and sporting a huge bump on my forehead from where I had hit the sink.

Not thinking it serious I called my boss, returned to work until she could get someone to cover me then went home. I din’t even see a doctor till two days later when my husband forced me to, worrying that maybe I had concussion as I just didn’t seem ‘myself.’

(Now we’d had a really rotten few years before this. My husband was just overcoming a battle with cancer. 4 yrs cancer free now, yay!!!)

The following weeks were a nightmare. The amount of times I found myself on the floor, or walking with no idea how I had got there. The uneasy sensation of being almost seasick, the prickling painful pins and needles that ran across my hands and face and the smell of burning had me constantly living on edge.

 Travelling for miles to various hospitals was a nightmare. The endless poking and sticking and machines drove me to distraction. I felt certain that if I had to sit through one more exam I would loose the plot completely.

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And so I refused the last test, the one that would have me hooked to machines, in the hospital, for three days. I will not lie and tell you that the epilepsy nurse, neurologist and GP appreciated my choice but they all understood it.

Diagnosed with stress and anxiety I soon fell into a depressive state that was hard to deal with. Sinking lower and lower as the seizures continued I ended up unable to eat, sleep or even leave the house.

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Signed of work I only plummeted deeper when I realised the only social life I had surrounded work mates. And that the previous 5 years of training to be a preschool teacher were worthless. Who would hire me now, who would trust me around small children. I certainly didn’t.

Sitting home every day only caused my depression and anxiety to spiral further which in turn had a knock-on effect with my sleep and all had a knock on effect with the epilepsy. Trying to get a handle on all three is something that even now I have still not managed to do. Despite knowing that, stress, depression and lack of sleep can bring on my seizures, they are not things I can control.

I had never wanted to be on daily medications so had always shyed away from antidepressants but I figured that now I had to take epilepsy meds every day another set of tablets couldn’t hurt so I agreed to the antidepressants.

It can take a lot of swapping and changing but the only way to find the best one for you is trial and error. I have the added bonus that many counter act the benefits of the epilepsy medication.
Finding the correct balance of medication is ongoing.

Along with the epilepsy medications I also now take antidepressants and I have sleeping tablets for when things are just too crazy with my sleeping pattern. Since I’ve done these my seizures have altered. Instead of suffering multiple seizures every day I now find myself having weeks with none. Now I’m not saying that everything is fine and perfect, it’s not. I still have seizures and they’re still bad. I still have very low moods and there are still times when I could just scream with the feelings elicited within me.

The significant problem for me has always been the lack of control over my own body. Not knowing when a seizure will strike, how it will be, who will witness it.. they are all worries, but I found that you can either let them get you down or you can move past it.

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Now the worry is still there but it no longer controls my life. I refuse to be a victim to epilepsy, I refuse to allow it to keep me a prisoner in my own home. Again this wasn’t something that happened overnight. It took two years of moping around the house before I realised I could help myself.

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Again this isn’t something that happened at once, it is ongoing. I gave in and saw the mental health nurse and together with my other doctors I’m improving every day.
There is no miracle cure, no wonder day when everything is fixed. You just have to hope that today will be a bit better.

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The other hard part was the loss of my wage. There are benefits out there, it’s just complicated to work them all out. Luckily I found https://www.epilepsy.org.uk/info/help-support. They were really helpful.

Epilepsy is part of who I am, but it is not the only part. Depression is a part of who I am, but it is not the only part.

It may take time, but persevere, it doesn’t have to be all you are either.

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I now have one book published, this active website and more books to come. Epilepsy and Depression don’t have to ruin your life, let them be your new start.

 

Famous People who had/have epilepsy.
Vincent van Gogh
Sir Isaac Newton
Napoleon Bonaparte
Agatha Christie
Charles Dickens
Leonardo Da Vinci
Theodore Roosevelt
George Frederick Handel
Lord Byron
Peter Tchaikovsky
Sir Walter Scott

There are many, check out this site.. http://www.disabled-world.com/artman/publish/epilepsy-famous.shtml for more names and more information about the ones listed above.

Always report any incidents, changes, seizures etc to your GP, neurologist, epilepsy nurse.

 

Famous people who had/have Depression or a Mental Health Illness. Depression is hard to catergorize as there are so many types, ie, postpartum depression, bipolar disorder etc.

Owen Wilson
Heath Ledger
Demi Lovato
Catherine Zeta-Jones
Princess Diana

(info from here http://www.health.com/health/gallery/0,,20526304,00.html)

 

 On a serious note, there are people to listen. If you are struggling and feel you have no one to talk to try here,

http://www.suicide-prevention.org.uk/

Breathing Space 0800 83 85 87

Samaritans 08457 90 90 90

 

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I saw this, and thought it was a lovely way to pass on a message…

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