National Hospital Appointment

National Hospital Appointment 

So today I went to the National Hospital of Neurology and Neurosurgery for the 2nd time. It was first planned that I would be staying here for a week this month however due to waiting lists and I’m sure many other aspects of admitting hundreds of patients in little beds my appointment has not come through yet – However I was given this day appointment as a follow up on medication and what is going to happen next regarding scans, and other tests that need to be done before many decisions are made – by them and me.
The traffic wasn’t great on the way there. Around the Tower of London there were more cars than I see in Herne bay in one whole day. I’ve learnt that you have to be an aggressive driver in London – our lovely taxi driver who takes us and is such a laugh and thankfully an amazing driver also.
So with my sat nav on my iPhone we managed together to negotiate the streets of London and arrive at our destination. There was no parking so Neville dropped us off and drove around with my blue badge to find a spot. He was then going to get a coffee in Costa which is in the hospital itself.
We got into the hospital and my first stop was the ladies room, London is a long way.
I then took my appointment letter to the main desk at basil Samuels department. The air was hot and humid – it was hard to breathe – There are so may people in one space.
The reception consisted of two ladies who were petite and quiet – it didn’t seem like they were very confident in there work and as the que behind me grew out the door I wondered if we would get seen by our appointment time despite being 40 minutes early! Anyway yes we finally got seen – she shuffled some yellow opera and asked me to take a seat. After 15 minutes I was guided by another member of staff to another waiting room and there I sat.
I was then approached my a medical researcher who was part of a research project to look into the genetics of Epilepsy and the different reactions of medication – say is there a genetic reason one medication works on one person but not another. I have already participated in one medical trial whilst I was here last time so he went to check if it was the same research trial or a different one. It was the same so he took some details and will apparently contact me about their research. That was good because It saved me having more blood taken.
I waited for another 20 minutes and was then called in. The consultant asked if a student Dr could sit in. I agreed.
Speaking to the consultant I remembered how nice he was. He asked how things were and all the normal questions that consultants ask. The result was that I need to go up on my medication quite a lot. It’s quite scary the amount I need to go up and he went through the many side effects that I may have – dizziness, nausea, hair loss, weight loss and all the other undesirable side effects!
There is also a Change in that I’m no longer going to be staying in hospital at The National Hospital of Neurology & Neurosurgery – however I am going to be going to Chalfont St Peter instead. It’s in Buckinghamshire which I’m not keen on – A long way from me but they have more sophisticated scanners and testing for pre surgery. The whole treatment and testing with Epilepsy takes so long but I hope we will get there in the end.  So we are on the waiting list for Chalfont.
I always get really scared when I’m sitting on the other side of the table being told how serious things are though. In between appointments I get calm and deal with things and then the consultant or both consultants in this case kind of make me scared and realise what life is and means and how surgery is a real reality. However you gotta keep swimming and I will fight on!

Little bit of nothing.

wow its been a little while since i last posted but its been a bit manic. I had lots to sort out (paperwork ect) regarding my grandad passing and finally i have light at the end of the tunnel. We have also been preparing and decorating for nan coming to stay with us and have also spent a lot of our time staying with her until she comes with us because she hates being alone. Its been a busy time.

Well what new news do I have for you? Ive had a couple of hospital appointments, one about my cluster headaches and the medication and its side effects and them wanting me to go up on it if we can at the beginning of a cluster which then prompted them to do another EEG. I had that done and a week later was asked to go to cardiology at Kent and Canterbury hospital.  Which i did. they are wanting to put me on a 24hour heart monitor so we are waiting back on that  – my heart rate is pretty low (about 40) and I’ve been getting chest pains so its another waiting game. The problem with health and medications is one thing effects the other and its a vicious circle. Im starting to think there is no end, no winning, its not living life its just surviving it as long as possible. How long that will be is not our decision.

ok !Yes I’ve been feeling a bit depressed lately its just another side effect of this circle I’m in. It really hit me when mum was talking and mentioned she is scared of loosing me and has started thinking about my funeral ! yeah charming you may think but the things that she thought of were better than i could and have planned. it is a reality though as we have been told by people but its life. I don’t think of that (well not all the time anyway).

Im not really sure what to do next either. Ive started up the charity and theres lots of work going on there. Its a hard job to do but so worth it.

please visit www.teamjo-epilepsy.org

Grandad

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Today has been the hardest day of my life so far. Saying goodbye to the one constant man and hero in my life. Today at 8:15am My grandad Ronald (Ron) Prett passed away. My comfort lies in that I was by his side and holding his hand as he gained his angel wings. 

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I have been a very lucky person, Grandad was amazing, my hero, my strength. and he knew that to the end. He knows he was loved and knows he made our lives so much better and amazing just because he was here. He was a true gentleman and I will always remember the funny, stupid and amazing times. Thumbs up grandad, I love you, and yes don’t worry I will be a good boy as you always joked. Lots of Love Jojo xxx

 

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Our First Sponsor Fairy Faye Publications

Im Proud to finally get round to announcing that the first Team Jo Epilepsy Foundation sponsor is Faye Beerling from fairy faye productions. Faye has been supporting the charity since March this year.

Faye at the charity event in March

Faye at the charity event in March

Faye also writes bespoke rhyming poems – examples of her work can be found HERE

Faye is a published author and one of her most outstanding books is River Tales from Old Glossop Bridge. It billed as a children’s book but that means big kids too. wether your a tiny tot or 101 this books for you.  She is donating a percentage of every book sold to Team Jo Epilepsy Foundation so dig deep and get those books ordered.

Faye and I with the first 2 books

Faye and I with the first 2 books

you can find her book at the following places. Click to be taken there.

 

* Fayes  Own Website *

* Waterstones *

* Amazon *

* Apple Store * 

 

 

 

Being strong?

I have to write tonight, it’s not all of what I want to write but it’s enough to clear my head I hope….

People say I’m strong but I’m not. I act it because I don’t want people to see the real me and what the real me has to deal with every day…. I mean if I complained about every pain and everytime I had a seizure or felt auras I would never stop moaning and I couldn’t bare to be one of “those people”.

I love life most the time, I love the wind in my hair the sun on my face, the sound of the seaside and the smell of fresh rain and the song of the morning birds.

I appreciate every moment when good things are happening.
I miss the freedom of being able to go out alone, having a job, going down the road alone to post a letter. I miss shutting myself away in my room with incense and quiet music without being disturbed every 2 mins checking I’m conscious.

I miss being alone and being able to talk to the real me when there is no one to influence my decision or thoughts. I wonder what I would be like now if I myself could actually have time to figure out who me is.

I would do anything to walk round the park alone for half hour. Watching the world go by. I would do anything to go back to work, amongst the patients I love to help, the staff I miss as friends.
Yet life is life and I can’t change any of the above. I can however change how people react towards me and that is the biggest challenge I will face in my life.

Know and remember what you say to others can make a huge impact upon them… It may just be a funny look or a remark or it maybe that you totally step out of line however if you think before you speak then your find life a lot nicer because your have more “real” friends for it. Don’t ever be that idiot who upsets everyone around them and ends up with no “real” friends but just people who are there because they don’t really have anywhere else to go.

I look around at other people and watch with questions, who are they?, what type of family do they come from?, what are their friends like? what job do they do? so many more. Sometimes I watch and wish I had that life – i see children with their fathers, I see pre teens going down town in their little groups for the first time, I see adolescents sitting outside in the pub garden having a pint/ drink and enjoying the sunshine. I see young adults at work or doing the amazing things the youth do. I then look at myself. I can’t say a lot there.

Then I look around my life rather that at it. I have a mum that loves me, a wonderful cat and lots and lots of “real” amazing friends and we all stick together. They are all there for me as i am for them and are totally amazing. Life is not measured by how many friends you have around you but by the friends who stick by you through thick and thin. Life is not measured in the crazy things you do in life but your dreams, hopes, desires and the journey. Life is amazing – it doesn’t matter what pace you take it at. fast or slow its still a journey.

I hate being told that I’m overdoing it.. I know my body and I’m the judge of that. I will do a little more every day in my own little way if I can to build myself up otherwise I will never be strong enough to truly fight.

This year is the fight of my life. I’m praying the London tests will mean surgery and a way out of this life. It’s not often you hear someone will for brain surgery but I do. I want this beast cut out or killed or whatever they can do to it to give me a bit of me back.
One day my time will come. Wether I win or loose it’s the way the battle was fought that counts.
I choose to fight it with a smile. If anyone tells me I can’t do something or I should stop cos I’m overdoing it, it makes me even more determined to prove them wrong.

jo

Life is not measured by the breaths you take, but by the times it takes your breath away
Hillary Cooper

Feeling stronger

Well here i am, back to blogging and feeling i must say a lot stronger to what i was feeling for the last couple of months. Ive also been working on my latest project which I’m dying to share with you all. Its really huge. I have now set up my own charity Team Jo Epilepsy Foundation so I can decide where the fundraising money and donations go.
The Charity is in the early stages at the moment in planning its first events but its major exciting. I want to thank all those of team Jo who have helped me get this far.

So this is the welcome to Team Jo epilepsy foundation.

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So until we get set up there are a few changes that need to be done. Im working on another website for the charity so you will slowly see changes on this one including links which id love you to go and subscribe to. Also the fund-raising donate now buttons – can i ask that you email me regarding any donations you wish to make and i can give you details on how to go about that. don’t worry i will still be blogging !

So yes really exciting times ahead.

 

Id like to make a massive thank you to Fairy faye productions for being Team Jo Epilepsy Foundation’s first sponsor

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Cluster Headache Lock in with Epilepsy

Wow its been ages since I blogged, and I’ve missed you all !

What with the fundraiser and sorting that out and then the aftermath which was left its been totally crazy. With the added problem of my dad walking out (yes a total other story) and  me being unwell for the past month and 2 weeks (not that I’m counting, grrr) its been really hard. So yeah the past 6 weeks has not been good. It started the day after a trip to the local shopping centre. I didn’t feel great but kinda just kept going. I got home and collapsed – i just felt so ill. My cluster headaches flared up and the seizures just kept going and going. Every cluster was ending in a seizure and it was not good. One night the ambulance was called but i was so determined not to go to hospital and one of the ambulance guys  that came knew me from other visits and was lovely – they all stayed for over 2 hours to get me stable. The outcome was midazolam which stops the seizures otherwise they don’t seem to stop on their own at the moment. luckily i think – I’m on a really low dose cos my other medication makes the midazolam work 3 times as fast ! so being on lots of meds does have its advantages sometimes.

So yes its not been good. for those of you that don’t know me or haven’t read this blog for long. Cluster headaches are “the most painful condition known to man/ or woman” they seriously are and that the doctors definition. The pain comes sudden and server, its like a red hot poker going through my left eye. I can’t see anything out of it yet the right eye is totally fine. The left eye droops and looks like I’ve had a stroke and my left nostril runs and left eye tears. Its all really nasty.

So the treatment for cluster headache is Oxygen, verapamil (which I’m on) and a injection which I’ve tried but sends me into multiple seizures -so my treatment at the moment is limited.

The oxygen does help – as do high pain meds. The oxygen is to be inhaled through a non rebreather mask at 10-15lpm. Its hard at that power but you don’t care cos the pain is so bad. There is a special kit for those of you in america too. Ive read all about it and believe me it sounds great. its called the cluster O2 kit and can be found here….

Cluster O2 Kit  For $23.00 its a bargain, and anyone with cluster headaches in the USA id say get one. All the flaws of the UK National health service mask are rectified in this one kit and id expect the results to be much greater. You can order from the UK however postage for me makes the price too high but I’m saving up for one. Id also advise to get a couple of spare masks if your in the Uk so if one breaks you have one straight away rather than waiting weeks for a replacement because of shipping.

 

This is the piece of art i did for my cluster headache consultant :

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Anyway I am starting to come out of the lock in however still having the major problems during the night. At least it means i can go for little rides out and such.

I also now have a Cluster headache Emergancy kit ! This is a kit or rather a few things that help me during a cluster attack and seizure and feeling really bad with them both.

1) Lucozade; I read somewhere that drinking caffeine and energy drinks at the beginning of a cluster helps you cope. so i have been doing this and yes it does help. It gives more energy to get through it for sure.

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2) Coconut water 100% pure; Coconut water is full of nutrients and will help your body cope with in balances. It has to be the 100% pure version.

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3) Ice pack: an ice pack to hold to your head is a very important part of the kit. Its so so soothing even when the pain is so bad.

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4) Coffee : afterwards a coffee is really good – normally with a couple of pain killers. Don’t buy the painkillers with caffeine with them in the shops – they cost twice as much if not more. You can get the same effect with a cuppa !

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5) A chillow ; Although I’ve said an Ice pack, if you want to lay down its hard holding an ice pack to your head. A chillow is a pillow which is chilled by adding water into it and then keeping it in your refrigerator. (NOT THE FREEZER) . It stays cool for hours  !

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Thats about it for the “emergency kit” they are my thoughts anyway. If you have other things that help you during a Cluster or Seizure attack please comment below and let me know !

 

Ive also been working on a special project which I’m bursting to share with you all but for now your have to wait till the next blog ! ….

Epilepsy Spring Fair 2014

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The Epilepsy awareness spring fair on march 29th went really well –  I cant say I wasn’t nervous or not feeling at the top of my game cos I wasn’t . The weeks of preparing had caught up with me and i was tired, in pain just about everywhere and had had a bad night previously. Id picked up some cupcakes which were donated by sweet dreams cupcakey (Click Here to visit their site ) and then came home to a massive cluster attack followed by seizures but I did manage a little sleep. Despite this however I had things which are worth their weight in gold – my friends and family ! yes despite the previous weeks of torment and pain dad was also there to support me (his first team jo event!) Mum, dad, Rolf, Larry,  They were amazing, packing up their cars and vans with bric a brac, cake, soap, mums card game and my suitcase of pillows, blankets, drugs and oxygen which I pretty much need for a day out anywhere!

We loaded the boxes inside, or rather my friends did while I got in the kitchen and tackled the urn which needed more tackling than one would think. Finally i got it plugged in and filled up so we could all get a much needed cuppa coffee down us – followed with a bit of cake ! it was well earned cake.

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We set the hall tables out after moving a staggering amount of chairs surplus outside ! the hall was smaller than we thought at first (later on we found 2 people didn’t turn up which meant i would have arranged it differently however hindsight is a wonderful thing!)  Still we managed to set the tables up – put the labels out id printed with names of people and their stall name so there was no mix ups on tables.

We were really lucky as the weather was getting brighter and warmer while we were setting up meaning we could put a few tables of bric a brac outside :-)

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I set out a corner for the entertainment (my lovely conductor of Kent Coastal Concert Band) Paul Valentine playing saxophone and the upbeat, energetic Reg E mental the children’s entertainer with his magic and mystical tricks.

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Then we started on the actual hall decoration. Claire and I had got streamers and purple lanterns and made ribbons for the windows – the hard job was putting them up.  Rolf and I strung streamers criss, crossing the hall and I sat dad down with the task of cutting the others to length to go all around the walls…. afterwards it was quite effective! The hall was bright, purple and full of tables.

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Pauline and claire arrived and Pauline started organising the kitchen to her liking as well as the 100 cupcakes which had been donated via another really good friend Hellen (so grateful) and Pauline’s own cakes. Claire set to sorting her jewellery stall and next Rolf and dad blew up the many balloons and put them around places.

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People started turning up to sort their stalls and then it hit that I had still got to sort my stall and the epilepsy stall. I started organising my stall which was more stressful than i thought – previous events I had done and been to mum had always helped and so it wasn’t such a manic panic… yet she was doing other things and I had worn myself out doing the rest of the hall so my own stall got on top of me bait – however I got there after a few struggles and the hall and my Glitter lining crafts stall was set up.

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I had a glitter tattoo applied to my face to advertise more and within the next hour everyone was set up.

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The weather was bright and sunny and the people came out to support us,  it was lovely to see people making themselves in groups around the grassy areas outside in the sunshine talking and listening to Paul Valentine.

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There was also a few impromptu clarinet duets from Rolf, Sue and I (rolf on his soprano)..

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Reg E mental went round the hall and entertained the children and adults with his on the spot magic and outwardly flamboyant personality which you cannot help but love.

Refreshments were served and people were indulging in the lovely cakes on offer.

Faye arrived and had her stall set up to perfection –  It was her first public book signing so was extra special day…and she also donated a percentage of each book to Epilepsy action via the spring fair.

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During the event it was lovely to have so many people come up to me and chat – id met them online, via groups and one even via twitter and it was lovely to finally meet these people and hear their stories and the things we shared.

Pat and Chris Enjoying refreshments & music

                                   Pat and Chris Enjoying refreshments & music

The raffle was a huge success with many people winning the lovely prizes that were donated.

The event has been commented as a great fun day out by many and ive had many good comments of how well it turned out and was organised.

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Mum on her Card-tastic stall

Amy Guest of Giraffe Floristry

Amy Guest of Giraffe Floristry

 

Jill Goldfinch with her handmade cards

Jill Goldfinch with her handmade cards

Claire on Jewellery Stall

Claire on Jewellery Stall

Pat and Friend Selling well on the outside bric a brad

Pat and Friend Selling well on the outside bric a brac

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Sue Cook applying glitter tattoo’s

Georgina with her lovely wooden art stall

Georgina with her lovely wooden art stall

Id like to thank all those who helped make it happen, donated prizes, bric a brac, services or cake !

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Also a massive thank you to team Jo. You are the people who gave me confidence to make such an event happen, made me believe in myself. Im really glad everyone had such a good time – the total of proceeds made on the day is over £450 however more money is still being collected and a grand total will be announced on the website and Facebook page once the final count has been done. The money collected is going to Epilepsy Action.

For more information of future events or what is going on with my epilepsy fundraising and awareness project please keep visiting this website and also pop over to my Facebook Page. 

Amazing things

Well the last month has brought with it troubles, pain, worsening seizures yet some amazing thing too.  I will go over what other things have happened but I needed to blog about the good things first !

I managed to finally get the rings for mum and I resized and so we could both read them. I brought these rings back in September yet they were the wrong size. Due to stresses, strains and health it has taken me till January to get them resized. However the wait was worth it. Now mum and I have a reminder of the love we share as mother and daughter on our fingers. The best thing about these rings is I designed them – the little ring fits inside the bigger ring to make the heart whole. Just like us. I hope mum will have this reminder of how much she means to me forever.

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I met a lovely lady on Facebook who contacted me about writing a poem about me… She is a best selling author of amazing children’s books. Her first one is on Amazon and there are more to come.  Faye Beerling uses poetry in her books and when she makes amazing pieces for people who buy her personalised poems. Anyway I met this lady and I’m sure we will be life long friends.

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The poem can be viewed soon when I do a special blog for it.

 

Also I have been sorting out my next fundraising event “Epilepsy Awareness Spring Fair” on march 29th 11am – 3pm at St Bartholomew’s Church hall in Herne bay . For map please see Events Page.  Theres lots to organise but I’m enjoying the challenge. This event is the biggest yet but will be fun for all the family so please come along.

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My Nan Turned 90 Years old and is looking Fab for it ! she doesn’t act anywhere near that age. Still lives in her own home with my grandad (who is 91) and loves a bit of fun ! here she is on her birthday with her balloon & Badge which she loved opening pressies.

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I saw a friend who I’ve not seen in 6 years…. twice. He came down one week and then again 2 weeks after bringing with him pressies he brought back from his pilgrimage from mecca including prayer beads and water from the Zam Zam well in mecca which is said to bring with it healing properties. The stories were amazing and he always brings with him a new outlook on life and everything really so i had two really good days with him. Seizures were the same but it didn’t seem to matter as much as i was just so happy to see him.

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Also The “Epilepsy Awareness” & “Team Jo ” car stickers have been revealed which is quite exciting !  These will be able to be brought from us at the fundraiser on march 29th and hopefully from our shop which will be up and running as soon as details are sorted out.

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Epilepsy Awareness team jo Epilepsy awareness sticker (1)

 

And ….. this website ! which would not have happened if it wasn’t for Rolf Habing. A very good friend of mine and Team Jo member who I’m proud to have. Rolf you have been amazing over the last month not only with the website but learning about everything and my life enough to stay with me and just chill or play music when I can and know what to do if a seizure occurs. The clogs, cheese and peanut butter sauce & Sprinklets was good too ! I have very few friends with the guts to be with me alone & isn’t scared of me. So thank you for everything. The website Especially.

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New Years Resolutions


A New Year, a new start –   Yet people still hold grudges? 


We once again welcome a new year that brings with it a message of hope.  A dawning of a brand new chapter in our lives that shows us that it’s okay to let go of the past and start again. It’s like a yearly reset button that allows you to change whatever you like. It’s an opportunity to reinvent ourselves but only if you have the strength to keep moving forward.  It’s one thing to sit down and create a long list of New Year’s resolutions, and it’s another to have the will power or self-discipline to follow through with them.


What are you willing to do differently this year?  What are you willing to sacrifice so that you can finally live the life that you have always imagined? Will your change make other peoples lives better?  


A few people have said things to me over the last few days about things and people I know. Its got me thinking that this reset button called new year isn’t being used correctly. On the whole people are making pointless resolutions which they never keep. This year instead of sitting down and coming up with a massive list of resolutions, come up with one thing to do and then just do it.  You don’t need to prepare.  You don’t need to buy anything else to make it happen.  Just do one thing.


I can think of one that would stop the hurt and pain and stress of life for many people that I’ve been hearing about…… Stop rudeness to others, stop holding grudges however big or small. Get over whatever it is thats holding you back from being nice and civil to people around you. Its a desperate  waste of your life and your hurting others. 


When someone is In the situation I am you look at life very differently – every morning I wake up in my own home, every moment, conversation, feeling, picture, days out of hospital or with less pain, not being on oxygen is precious. I dont know what’s going to happen in the next minute, hour, day – every seizure could result in me not being here so in reality I don’t know what the future holds. I value every part of what I have. Every friend, every hug, every kind word, and more. Yes the pain gets me down yes the seizures get me down that can’t be helped  but when people get me down that’s when I get upset and cross because people can have more respect for others people can have manners, people can change their ways and start appreciating what they have – I wish those people who hold grudges, have issues with others and cause issues for others would take a look at their life and realise its not all theirs- it’s on lone. One day you won’t be here and its only memories that will be left. Do you want peoples memories of you to be bad – “that woman always had a grudge” – “that man never had a good word about anyone” ? whatever lives real meaning is, its  precious and too short to hold a grudge, cause hurt or halm to others or be a idiot.


Life is precious and shouldn’t be used to cause problems and issues for others. If everyone applied this rule to 2014 who knows the changes that could happen – life would certainly be less stressful, depressing and upsetting for many people. 
Make 2014 the year to change yourself and use your life for good and become a better person. If you can be nice, say something nice or have respect then just don’t say anything at all. Don’t make someone else’s life bad because you have a problem. 



As the ancient sage Lao-Tzu reminds us, “The journey of a thousand miles begins with a single step.”


Don’t waste any more time preparing — Just start walking and create the life you were meant to live!





This was published in the online paper thursday thought 
Click here to read it

My experience with epilepsy