3E Loves Wheelchair Heart Essay Contest

 So, it's the new year, January , and a busy month for me, with family and friends' birthdays , and a month of awareness and acceptance for differently - abled people as it's  the International Day of Acceptance , created by a company that has won my heart in recent years for what they stand for. 

As many of you know by now, (and also for those who don't) , I have  been  interested  in , and supporting , 3E loves Wheelchair Heart for about a year now , and have lots of their merchandise . I think what they do is a great cause from a personal point of view , and am always looking for writing opportunities and love competitions , so I decided to enter the 3E loves Wheelchair Heart Essay Contest. So far, I have  25 votes after having submitted my vote 2 days ago. Here's my full entry as the word limit  was 5,000 characters, and once I start writing I can't stop ! Please vote for me here by 26 JANUARY 2014 . http://bit.ly/1cj9Xys

I love 3E loves Wheelchair Heart. I heard about them through a friend years ago and got an email yesterday about an essay contest run by them and thought I'd participate. Here's my entry. Please check out  http://www.wishpond.com and vote for me to win! . 

The brand name 3E loves wheelchair heart is now familiar to me and I first saw it mentioned in a friend's post on Facebook a few years ago, so I shared the post, liked their Facebook page, followed them on twitter , and had a look at the website. As soon as I read what they stood for, I felt I had to "join the movement" so to speak . Around the time I found out about 3E loves wheelchair heart, I had already been spreading disability awareness of my own and other disabilities , educating and empowering every day through my Facebook page , Katherine Hayward my life with cerebral palsy , and I was pleased to have found out about another good cause to talk to my fans about , as , through my own experiences, I feel differently - abled people are not valued enough in society .

What I love about 3E loves wheelchair heart are not just the products (I'm a total shopaholic! ), but the whole message and the fact that 3E loves wheelchair heart strive for GLOBAL awareness and acceptance of disability , and not just on a country - wide scale, and that's what very few organisations strive to do. Since I found out about the company, I have spread the word to let others know about it through both my Facebook and Twitter pages, I even have Pinterest boards for disability awareness and 3E love , and I "wear my heart" with pride as I'm the proud owner of various products: a hoodie, some badges, a tote bag, temporary tattoos, wheelchair decals and a necklace , all of which I love.

To me, the Wheelchair Heart symbol symbolizes unity, mutual support across geographical borders , and a great community : a place where I feel accepted, appreciated , and proud to be disabled. I have never been ashamed of my complex disabilities , but it makes me happy to be a part of the huge community and movement that is 3E love.

The symbol is simple but effective , and the heart being incorporated into the wheelchair wheel reaches out to people and says they'll be wanted, accepted and appreciated by the organizers and everyone linked to 3E love.

I love 3E love as it's unique in its approach , and not limited to reaching out to people with a specific type of disability . The common stereotype is that disabled people are all in wheelchairs (I am) , and that disability itself is always "visual". Here , I'll tell you a little about my story. I was born 32 years ago in the UK at 29 weeks . I had bilateral brain hemorrhages at birth leading to spastic quadriplegia cerebral palsy, hydrocephalus and severe eyesight difficulties. People see my wheelchair and glasses, but they don't see the "hidden" aspects of my disabilities . They cannot tell just by looking at me that I have hydrocephalus, a neurological disability where the cerebrospinal fluid that normally protects the brain is at a very elevated level and I can't control or absorb it so I have a " shunt", a pressure valve in my brain connected to a long thin tube going down to my abdomen to drain the excess CSF into my bloodstream.

They do not realise that without this I'd not be here to tell this story. They see my glasses and assume they correct my vision , but do not realise they do not and that their strong prescription is the only way I can see ANYTHING at all, and that I'm registered legally blind, just short of being registered totally blind.

This leads me to say I never seek to create a "sob story" about my life as a disabled person, but show people being disabled is no bad thing. That's why I've created my page on Facebook Katherine Hayward my life with cerebral palsy and the Blogger blog of the same name . I became aware at a young age of the need to create a positive social model of disability , and knew I wanted to "do my bit" to help create that.

Disability as I know it as I learnt about it during my university studies, has two models: one which is the "Medical " model of disability which states that the disability itself is a "problem" to fix , and doesn't acknowledge that there's a PERSON behind the disability and doesn't "see past " the disability itself. The other model is the social model of disability , which has taken the approach that it is Society itself which further disables people with their attitudes, be it being rude to us, or not wanting to include us and not making places people would use every day accessible to those of us with disabilities. I have been In my fair share of situations where I was discriminated against as a person with disabilities, and I have fought to change people's perceptions to me and my disabilities ever since I was 7 years old. I have always favoured the Social Model, as we with disabilities have no fault we are disabled, and I for one (and I know so many people will identify with this) don't enjoy being poked and prodded by a doctor as if I were a rare species , as whatever you do you can't cure Cerebral Palsy or Hydrocephalus , and my eyesight difficulties are inoperable. Despite the "efforts " of society to create "acceptance" , be it by changing terminology (for example, instead of saying "disabled person" , using "person with a disability" or "differently - abled"), this is not enough; we have to go down to the core and change attitudes completely but who knows how long that will take to happen, In the meantime I'll keep raising awareness. Another thing Society does wrong is it assumes we are all incapable. Illiterate and not intelligent. I have a degree, speak Spanish and am in a relationship. Society needs to learn to treat us as the equals we really are and needs to realise disabled doesn't mean " different", but "unique" . 

Happy Thanksgiving, And What I'm Thankful For

 This year, I've decided to publish another blog post about what I'm thankful for, despite the fact that we don't celebrate Thanksgiving in Europe, as I think it's important to be thankful for things in life.

Firstly, I am thankful for just being alive after all the struggles I had coming into the world back in 1981. 

I am thankful for my intelligence and eagerness to study and learn them as without that I would not have got a degree learnt Spanish, or written my recent book as part of the National novel writing month. 

I am also thankful for having the patience and being disciplined enough to be able to work on it and meet the target as it was my first time doing the competition. Words cannot express how proud I am of myself! 

I am also thankful to those who love me and who care about me, and for having Alfredo by my side through thick and thin no matter what. 

I am thankful for my friends and family and to have been born in a country where doctors and nurses in the N ICU and later an  operation to fit me with a shunt for hydrocephalus was able to save my life.

 I am thankful for having known about Natalie my twin sister even though it was in the sad circumstances of knowing she had come into the world only to pass away a short time later. 

I am thankful for being engaged to Alfredo and for him having the commitment to make future plans with me for children and a future together. 

I am also thankful to have the imagination I have and to be able to think of future book or disability awareness projects are not all life projects in general that I would like to fulfil. 

I am thankful , as we get nearer to Christmas , to have someone to spend Christmas as I often think of the people who have nobody and it makes me feel sad. 

I am thankful for the fact I'll soon have my new  electric wheelchair. 

I'm thankful to have food to eat and clothes to wear and somewhere to live as there are so many people in the world who don't have that . 

HAVE A GREAT THANKSGIVING EVERYONE! 

Shevi the Storyteller's Storyteller: My Top Ten Sci-Fi Movies

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My Novel Spellbrooke Was A NaNoWriMo Winner, and Some Tips For New NaNoWriMoers

This November , I decided to participate in the National Novel Writing Competition (or NaNoWriMo) for the very first time , although I'd heard about it. So I decided to give it a go . I was really nervous to start with, but signed up and joined a few forums, the Newbies forum and the forum for my age group, and just introduced myself, then I found I had a writing buddy. I planned just writing down ideas in a notebook and on my iPad and read all the FAQ and advice on the NaNoWriMo site. I also followed NaNoWriMo on Facebook and twitter , and also Nano Word Sprints. I retweeted advice I thought was useful , and tried to reach my daily writing targets, and if I went over them that was a bonus. My advice would be read the NaNoWriMo site, find some writing buddies, and try and stick to the daily targets. I updated my word counts several times a day too. Also, join the forum for your genre , I did- mine is a fantasy book. I also searched the net  to find out more , and used Pinterest to pin aspects of writing that would be useful in this , and other, projects. Other advice: decide what time of day you work best at, and set yourself a writing target for the day. Mine was sometimes to finish a certain scene within the book, for example. Also , decide if you want to write in silence or with music on, -I did a bit of both- . I drew up a timetable to aid my focus and decided if other things I had to do during the day could wait until  I had finished the part of the book I was working on or not. I also had lots of hot drinks , which were relaxing , like herbal teas, and made sure I did something other than write my book before I went to bed, and that I was relaxed when I did so, so I'd be fresh for the next day. If I thought of a new idea I wrote it down before I forgot. 

After all these days of using dragon dictation for my novel, I finally finished it yesterday. All in all, I experienced a lot of emotions, from excitement, as registering on www.nanowrimo.org to indecision over some parts of my story, to moments of inspiration , and not so much inspiration. There were late nights, lots of cups of herbal tea, lots of encouragement from Alfredo  and my friend Siobhan , and then some moments when there were almost tears when things almost didn't go great (not helped by the tiredness caused by working on my book everyday). I kept myself together , and concentrated a lot and finally , was able to submit my book called Spellbrooke yesterday. There were some problems uploading it , as it was my first time doing NaNoWriMo, . Then, the relief and happiness when I'd finally managed to upload it successfully (after several emails to the tech team and my writing buddy Mona- thanks for being patient, encouraging and helping me get out of some writing- related problems! ) 

To anyone who, after reading this would like to do NaNoWriMo, I'd say go for it, take the plunge and try it. Before NaNoWriMo, I never thought I'd finish writing a novel in a month , and I'm proud I did it , despite the fact I used my dictation programme, but that to me is immaterial. I did it the way I could and within my abilities , but I finished, and have my novel , Spellbrooke , to show for it. I got a winner's certificate too, which I'll print off soon, and on December 4, there are more surprises in store for the winners , so I'm looking forward to that, but for now, I'm enjoying relaxing, and the satisfaction of having dictated a novel in less than a month. I really started on November 4 , as I planned for the first few days, as I didn't realise the 'Planning Time' for Nanowrimo was September/ October. I know for next time , though. 

If you asked me what I'd change about NaNoWriMo next year, I'd plan earlier, but I think I'd do everything else exactly how I did, as it was a great experience. 

For anyone who's reading this and still writing their NaNoWriMo novel, 

Hope this advice helps, and good luck. Oh, and if you're wondering what cover I chose as I submitted my novel, this is it below. 

I'm going to read now. I'll blog again soon 

Spellbrooke Covers: Which Is Your Favourite?

Also as part of NaNoWriMo. Writers can upload a cover photo. Which is your favourite? I'd like to involve you as fans of my Katherine Hayward my life with cerebral palsy blog and Facebook page, and to invite those of you who aren't fans yet to join and spread the word for CP and hydrocephalus ! 

Here are the choices . Please comment here on my blog or on my Facebook oage . 

Thanks for your support ! 

Sneak Peek: My Book Synopsis For My First Book: Spellbrooke

As part if this year's National Novel Writing Month, I had to provide a synopsis for my book, here it is . I wanted to share it with YOU, the fans of my page Katherine Hayward, my life with cerebral palsy . 

Casey Ford and Rachel Brown have a lot in common: they are best friends, they are both nine years old , and they both have Cerebral Palsy.  They also want to be popular . 

It's the the last day of school before the summer holidays. They both  love reading and horses. They are looking forward to a nice fun, relaxing summer, without  Angela and her friends from school teasing them and Casey's brother Nick being a nuisance . The summer starts off great, with trips to the swimming pool and shopping centre , but then the girls ' parents book them into Primrose Fresh Air Home , a summer camp. Clearly, their idea of fun is very different ! Reluctantly , they both go, and in some ways it's not so bad, they ride, swim, do crafts and go on day trips.

 One day trip is to Swallowdale , a town where they visit a fortune teller with a crystal ball who tells of a magical land called Spellbrooke, where Faries, Humans and animals live. If only they could find the way there.......

A scandal forces their days at the camp to be over, but it's not all bad news as Casey's tenth birthday arrives, and she's given what she always wanted: a horse she names Noah. They make a promise that they will visit Spellbrooke again, and one day they do. This time, they're set a Quest by Queen Tobenia and King Oliver II: find the missing Popularity Potion. 

Together with an unlikely group of friends and animals, they battle through Spellbrooke completing mini Quests, and searching for the missing Popularity Potion , but will they complete it ? Will the Potion work? Was Spellbrooke real or just a dream 

Join Casey and Rachel as they discover a new land, make new friends, and discover a true friendship can never be broken. 

An Update On What I Did Today

Today, we woke up late and had a late breakfast. Then , we saw The Americans, and I kept working on my book. I was trying to verify the word count but went  goes wrong, I hope that I can check my word count in time to submit it  on Monday. 

Monday is the first day to start to submit your book to be able to be  a winner  if you have passed the minimum amount of 50,000 words. Now I am relaxing, I'll maybe see  a film on the internet or read a book. The competition  ends on  the 30th at midnight. Hope you have a good weekend

Still Adding To My Book

Today I've been adding more to my book , as as read through it, I think of other things I could put in. I've also been reading for pleasure, and am enjoying the Morganville Vampires book #5  Lord of Misrule. Tomorrow I'll see if I can do more on my book, but for now I'm off to bed. 

More tomorrow 

Today Was More Relaxing Than Other Days: I'm Now Editing My Book

Today was a more relaxing day in relation to my book. I went on Facebook for while and I received an email from my NaNoWriMo writing partner. She has encouraged me alot during the challenge, and in  I am still dictating as I'm editing my book. My word  counts is in 52.013, and I have to edit more of  the book. I'm not getting overwhelmed ,  and I'm treating editing my book as if I were reading it, but seeing  if something is missing, or if something can be improved. 

I read interesting tips on www.ehow.com about things that I don't know about , and I'm learning more about the process of editing or publishing a book.

Today I Finished My First Ever Book For NaNoWrIMo

Today has been a great day, and another prediction of mine was right- that I'd finish my book today!! I did!!! This month so far has been very busy, since it started , I planned my book for 3 days and started dictating in the 4th , and finished today.  The final word count was over 50,000 by a couple of hundred words, and it needs a little editing until I submit it, but it's done. 

 As I went through my book, I researched things in the Internet I wasn't sure about, and made notes to help me with the story. I was focused a lot of the time and when I couldn't concentrate I did something else until I had more ideas. It's taken a lot if planning, thinking, concentrating , and imagination, but I've dine it, and I'm so proud, I'm already thinking about a possible sequel, and have a book series in mind . I just think it'll be so great if I can get it published somewhere , and start selling it. It's not all about the money, I know, but I have huge satisfaction from this , and I hope someone out there will be interested enough to buy it if I can get it on the Mass Market . 

I Dictated My Hundredth Page For My Book Today And Happy World Prematurity Day

Today  was a great day for two reasons: one was I dictated my 100th page, and more for my book. I've now done about 47, 690 words and I'm so proud. I've worked so hard for this, sometimes staying up late, and have sometimes felt Ill from the effort , with a headache and dizziness, but that happens often due to my Cerebral Palsy. I watched a film today , and I watched Avatar yesterday, but I have a little more time now as I don't have so much to dictate. 

Today is World Prematurity Day. I'm remembering my sister Natalie , who was born with me on 22 December 1981 . We were born 3 months early . I had a  grade 4 brain hemorrhage on both sides of my brain which caused spastic quadriplegia cerebral palsy , hydrocephalus ( too much cerebrospinal fluid on my brain causing it to swell) , and severe eyesight difficulties . I'm in an electric wheelchair. I'm remembering other Preemies too, and especially Natalie who passed away at 9 days old due to heart and kidney problems as well as effects of prematurity . 

Please share awareness for Preemies! 

I'll update tomorrow 

On My Way To Forty - Five Thousand Words For NaNoWriMo

Today , although I felt tired, and still do while I'm writing this, I managed to dictate more , and am now almost up to 45,000 words. I've done the preparation I need to do for tomorrow's part of my story , so I feel great about that. From the pace I've been going, my NaNoWriMo account says I'll be finished at 50,000 on Tuesday 19 November- I am so pleased ! I'm unsure if I'll write over 50,000 words yet, but I'll see when I'm there , at the moment, all I want to do is reach that milestone, just over 5,000 words til I get there! :) I'm going to sleep now so I'll be fresh and ready to do more tomorrow, and hopefully this headache from all the effort I've been to will be gone. I found time to watch Avatar today though. 

Goodnight everyone , and more tomorrow :)  

I Have Reached, And Past The Forty Thousand Words Milestone For NaNoWriMo

Today,  I wanted to reach the 40 ,000 words milestone , and I did! In fact, I'm at 41, 115 words, which is 87 pages at the moment but maybe more once I edit and modify the spacing and paragraphs. I am so proud of what  I have done . Today I read my latest email from the NaNoWriMo team, which suggested everyone printing off what they'd done so far, to motivate themselves more.  I think I will when I'm finished . Only a little more than 8,000 words left to go and then I will be! I have more of my story to tell though, so I'll see how it goes tomorrow. 

Progress For The Day , Feeling Happy

Since yesterday, I've made a lot of progress, I'm now on more than 36,00

 Words , and 77 pages . Now I've got this far, I'm determined to finish. Today, after waking up and all the usual morning routine, I decided to read www.nanawrimo.org again, to see what I'd missed reading . I read some Pep Talks from various authors , which were useful, and posted in the 50 000 words forum, as I know that's the word limit, but I'm not sure how much I can go over that . I also posted on NaNoWriMo's Facebook and twitter  pages about this .I found an email message from a Writing Buddy, basically , someone who cheers you on during the challenge-she told me I was doing great , which made me feel great , too. I sent one back cheering her on. 

I've developed some strategies to help: I won't look at the word count or page number, just dictate , and, at Midnight, I'll dictate some words before going to bed, to up my word count for the next day, as after all  after  Midnight. Is another day , then , I'll sleep. I'll be doing that again in about ten minutes, so I'll say goodnight and update again tomorrow. 

I Reached, And Passed, The Thirty Thousand Word Milestone For NaNoWriMo

Today , I promised myself I'd pass the 30,000  word milestone for NaNoWriMo - and I did! I have now dictated 68 pages of my book, and still enjoying it as much as ever. Alfredo is still being really supportive, and encouraging, and tells me I can do it, although the effort is giving me headaches, dizziness, and muscle spasms,  but also  making me feel happy, and exited but sometimes at a loss for the best way to put my point across. When my mind goes blank, I'll go and do something else for awhile . Then, I'll put myself in the character's position , and start again, to try and move forward with my story. Every day, I go forward, not back, and make sure I get enough rest , and eat healthily as always . Whenever I doubt myself, I'll think back to the 'big ' writing projects I've done so far in my 31, almost 32 years of life, my dissertation for my degree in Human Geography at the university of Reading , which I've kept since graduating in 2004 . and , way before that, in secondary school, when I was about 14 or 15, I wrote a Creative Writing piece about my memories of a holiday to the USA with my family , and staying at my aunty's mother's Summer redsidence, Great Oaks Camp in Oxford, Maine  . I got a grade A for this from my English Language and English Literature teacher Mrs Pollock , who was also my Form Tutor, at Didcot Girls' School in Oxfordshire . As soon as she read it , she told me I had a vivid imagination , and my parents said I have the  "best memory in the family" . I like to think I'm observant beyond my visual difficulties . So , all the way through the National Novel Writing Month challenge so far, I have tried to make use of all these skills. 

I can't wait until tomorrow to do more . 

My Progress After A Good Rest

I had a good rest last night , and did a lot of dictating today , over 4,000 words. I have now done  57 pages out of the 175 , and I'm really pleased with what I've done so far. I'm going to do a little more and then get some sleep . 

Feeling Tired But Happy With My Attempt At NaNoWriMo 2013

Today,  I spent the day  working on my book and dictated a couple more thousand words , so now my word count is up to 22, 690 which is 48 pages. I think that's good considering I didn't start dictating my book til day 4 of NaNoWriMo, as I was behind in planning . I'll make a mental note to plan in September and October next year , as the NaNoWriMo team recommends. 

   I got a little stuck on some parts today, so just made some notes and I'm back on track. I won't let this challenge beat me! :) 

I'm feeling tired tonight so I'll read before bed . Goodnight! More updates tomorrow. 

Almost At Twenty Thousand Words :)

I  started dictating at about 12 noon today , and have  doing so off and on until 10 PM this evening.  We watched   some TV today and I'm now about 900 words away from 20,000 words, and am on the 40th page of my book. I'm amazed at my progress and so happy with the way this project is going. 

More tomorrow ! 

Another Productive Day , On My Way To 15,000 Words (30 Pages Done)

Today,  I reached my daily target early in the day again. Today is the Writing Marathon, but I feel I've done enough for today. I've dictated over 3,000 words. Alfredo and I watched some tv, I updated my Goodreads account, and was thinking about what music I could listen to whilst writing, although I get distracted if the songs have lyrics, as I'm tempted to sing along! My songs to listen to when writing will be in another blog post . I'm really proud of being within 900 words of reaching the 15,000 word milestone , and still enjoying this challenge!!!

A Post About Reaching 10,000 Words For NaNoWriMo

Today was a great day. I slept earlier last night, got up earlier this morning, and that idea worked. I started dictating my story again after we'd had breakfast and Alfredo had showered me , then I turned my iPad on (which we charge while I'm dictating) loaded my Dragon dictation app and began. I didn't quite reach the word target for yesterday, but I did manage to today - and quite early on in the day. The difference was , today I continued dictating AFTER the status bar turned green, and , aside from various other things we've had to do today! that's what I've been doing, working on my book, noting things down every now and then when I wasn't sure of an idea for the book. My notebook is far from being filled up yet. I have a plot line, but am adding to , and changing it , as I go along, and it seems to be working. 

It's 9..22 PM , and I've just updated my last word count of the day : 4.222 words just today. This is the most I've done since NaNoWriMo began. I am feeling really proud of myself and can't wait for the NaNoWriMo Word Count Marathon- which is tomorrow.  I've already reached , and gone beyond ,  the 10,000 word milestone - I'm at 10, 103  words, and I'm hoping to reach the 15,000 word target if not then, over the weekend. 

The other really good thing is Alfredo is being really supportive , and encouraging , not like he ever wouldn't be, but at least he is, and that helps. 

We talked a lot today about whether or not I'll publish the book or not , and I've decided, whatever the reault of my NaNoWriMO is , whether I actually finish the book or not (although, according to my statistics it's likely as there are still 23 days left). Last night, I even dreamt I saw my book on the shelf of a well- known bookshop , and I daydream about book signings- it'd just be amazing if one day I go into Waterstones, or look online , and my book is there. 

Since starting NaNoWriMo,  and even before that I really felt I've found something I love to do , write , (although I've loved that all my life) , but NaNoWriMo is showing me that I can really do it- write for a deadline, and try and write a book . 

I'm so excited about tomorrow. :) 

I'm off to read for awhile and then to bed. 

An Enjoyable And Productive Day

Today started off with Alfredo and I not wanting to get up , but we did at 10AM. I was determined to continue with my dictation but we had computer problems we had to sort out. I'm using my iPad and an app I found called Textilus for my book. I'm liking the app so far , and it's good as it has a word count, lots of different fonts, font sizes and folder covers. After we sorted the computer problems, It was time to eat, but I managed to grab some dictation time before eating , and then have been working on my book for a few hours this evening, since the challenge started, I've been constantly looking at my word count , but today I decided not to , and just dictated, next thing I knew, bingo! the  bar  next to my daily word count was green :) I felt a real rush at this and am actually now really into the story . So now I know it's true what authors say, and advise, the best way to write is just WRITE , and edit later.  Sometimes, I'll edit a little as I go along , but Textilus also goes with the "write first , edit later" approach, so I'll stick with that. 

For now, I'm going to say goodnight as it's almost Midnight, and I'll finish by saying today was my most productive day, as I dictated over 3,000 words,  and have dictated 5,207 since the beginning of November. I'm really trying not to think of the 44,000 and a bit more words I still have left to go,  but the important thing is that 50,000 word target that was there at the beginning is counting down, and I'm doing my best. 

Back again tomorrow 

Finally Got To Try Out The Powerchairs I Wanted

You may be wondering why I didn't write an update on my novel here  today , I was out trying powerchairs (electric wheelchairs) . After many emails to the wheelchair technician, I finally managed to try out  three: the Salsa M and Jive M by Sunrise Medical and the TDX SP by  Invacare . They are all mid- wheel drives , and on having the larger wheel in the centre they have a smaller, tighter turning radius. This was the first advantage I noticed when comparing it to my rear - wheel- drive Quickie Rumba , also by Sunrise Medical. The TDX SP and the Salsa M came as demo versions with solid tyres- something I don't like, as I find the solid tyres make for a bumpy ride, despite the suspension. The Invacare TDX demo had 50°  Tilt in-Space , which makes the whole wheelchair tilt back to relieve pressure and relax muscles, where the Salsa M had 30, and the Jive had 50 too. The standard seating on the salsa M wasn't supportive enough for me as I need a higher back . I'll transfer the Jay 3 seating system to whichever chair I get . The TDX had the largest battery at 73 amp , followed by the Jive (70 amp) and Salsa M (50 amp) . The Jive came as 10km/h as standard, and the Salsa M and  TDX SP come as 6km/h. I'm not sure what they're like at getting under tables yet as there wasn't a table to park the chair under. 

Trialling the chairs went ok until the battery on the Jive was about to go flat as the chair hadn't been charged. There followed an anxious 10 minutes where the technician was driving the chair for me (as my hands , arms and fingers were tired ) until we got back to the shop.  It wouldn't go up a curb for the same reason. 

I saw the personalised gel filling I have yet to try inside my cushion , as the standard gel I've had for the past 2 years has deformed and I did think of  getting an air cushion, but was told by the technician that that wouldn't help my posture and comfort. I also still have to try the harness to help my trunk control 

So, I'll be seeing the technician again soon I hope. 

When we got back, I updated my Facebook pages and we ate . I'm now going to read before bed as I'm very tired from today , and the tiredness is making me spasm a lot, and my whole body aches . 

My First Day of Writing My Novel (Using Dragon Dictation)

Since the National Novel Writing Month (NaNoWriMo)  challenge started on 1 November, I've been planning , but today I decided I'd get my book going . I was very nervous at the start and couldn't get into it , but then just took a do breath, looked through my notes and started dictating using my Dragon Dictation. ipad app. I also have it on my computer, who knows maybe I'll use that one tomorrow. I have now devised  a system, I dictate what I want into Dragon , then copy it to Textilus, an iPad word-processing app I downloaded. I paste it there and it has a word count tool. It took me awhile today , between breaks and reading my notes, and I didn't think I'd do it, but ..,, I have now reached my word limit for today.  I was very pleased when the status bar turned green ! - I can't tell you how much !!!! . 

My NaNoWriMo account states that if I want to meet the deadline on November 30, I have to write just over 1,700 words per day . I'm so into the story and proud of what I've done so far that I feel like doing more today :) 

I also have to prepare for tomorrow as I'll be out at the wheelchair shop. 

You must be thinking : what do I do to stay focused? Well, I remember how I felt when I was at University and had finished my dissertation (thesis). I remember feeling really stuck at the beginning, but spoke to a lecturer I trusted who gave me a topic to focus on. I felt much better once I started planning , and I thought of finishing it , and I did. That was a struggle, I used Dragon Dictation then too, and my dad helped me , but I finished it. 

At the moment, I'm imagining finishing this , and I'll work as hard as I can until I do. It'll be great if it actually gets published . I'm not thinking about winning NaNoWriMo, along with others, just participating at the moment. 

A Busy Day Planning My First Novel

Today, I woke up with the conviction I'd work as hard as I could on my novel, and I did do what I could. The day has been filled with planning , and in glad I have my notebook. Out of all the plot lines, I decided I'm going to write a fantasy story about a girl called Casey who has Cerebral Palsy and wished one day to own  a horse. She gets a horse for her birthday. The horse, it turns out, has magic powers and leads her on a whirlwind adventure in a magical land in her quest to get what she has always wanted: to be accepted . 

That's just a rough synopsis. In between thinking of, and planning, my story, I found free word processor software on my iPad , watched a film and had a pizza for dinner. Now, I'll be reading a little before doing more work on my book tomorrow. I have written a few words so far, not the ideal, but I wanted to get a good plan sorted first. I know I should have planned this maybe last month , but I feel like I'm on track now and almost ready to start writing properly. 

I'm VERY excited about this project . 

More tomorrow :) 

NaNoWriMo : A Step Closer To A dream?

So  far, this year has been quite a year for me  in relation to books, what with the GoodReads Reading Challenge (which , luckily lasts all year) going on since January, and the Dewey's Read--A-Thons in April and October. 

Yesterday, it was the first of November , which means the first of the  month, - not long til my birthday now -  and .....the start of National Novel Writing Month- also known as NaNoWriMo - which I had heard of , but never participated in. I Googled it and immediately found the website. I signed up straightaway. I'm glad I saw the mention of it in a friend's status on Facebook or else I've never have known. The goal  is to basically write a total of 50,000 words, and about 175 pages, throughout November.  

As I only signed up yesterday, I've spent a lot of today reading the NaNoWriMo  website , and familiarising myself with the challenge , as well as dipping into articles on www.ehow.com (some of which were promptly pinned to my "Writing" board on Pinterest as I think they'll come in handy. I've found some word- processing apps on the AppStore which have now been downloaded to my iPad. I've always wanted to write a novel and feel like this challenge may be the kick- start I need .  My absolute dream would be to get one published . I've begun planning , and I'm using my leopard-print notebook I was given last Christmas . That reminds me- I'll have to ask for more notebooks this Christmas/ birthday. I'm aware that the childhood hobby of writing I had has always stayed with me , and I want to make real use of it. 

As I write this, I'm aware of how tired I feel- it's been a busy day . I did get to see some movies on TV though, one of which was The Invisible , as Halloween film season continues. 

I'm off to bed now . 

I feel very excited about this challenge! 

Here's the website and sign-up link http://nanowrimo.org/

How I Spent Halloween 2012 and How I'm Planning To Spend Halloween 2013

Halloween is finally here! I don't  have the same enthusiasm as I did about it when I was a lot younger, but I enjoy seeing all the Halloween products in the shops . By the time Halloween comes around, there's a definite chill in the air, so the weather is atmospheric.

Halloween is a great oportunity for a mass "dress up" for children  (and some adults) alike. I dressed up a lot when I was younger, and can remember writing in a recent comment on someone's Facebook page in answer to the question "what was your favourite  Halloween costume?" " a pumpkin, and a witch" . 

So far today, I've watched a few episodes of The Ghost Whisperer, and yesterday I changed my blog themes to Halloween - themes. 

Last year, I didn't have a costume, but Alfredo painted my face like a cat. To do this, he just used  my black Kohl eyeliner, foundation , powder  , red lipstick and grey eyeshadow. 

We took a photo with instagram , in colour and black and white . The photo was very effective. This year, I've chosen I'd like my face painted using makeup in the style of an angel. 

We will also watch some horror films on TV or the Internet. Oh, and if you're wondering about Alfredo, he isn't a big fan of Halloween, but he's a great photographer! 

Here's my photo from last year,  which turned out to be pretty popular on Facebook! :) 

Last year, we found some Halloween muffins in the supermarket which were delicious.  Here's a photo of them too.  We couldn't find them this year. 

Wishing you all a great night tonight! 

Halloween Round The World.

All Hallows' Eve (Halloween) is world- renowned and celebrated in many cultures. In the USA. Many people dress up , and the atmosphere is shown to those of us outside the USA via films , and halloween- related animated shows (eg the Simpsons Halloween specials) . From what I've heard from people I know on Facebook, my friends and family in the USA who want to celebrate Halloween have been busy with their preparations for weeks. Only a few days ago, I was on FaceTime with my parents who told me some of my family in the USA have been to a few parties already. 

Trick or Treat (or "guising" as Wikipedia explains it's really called) , is something that's widely done in the USA , but also in the UK, although perhaps to a slightly lesser extent, although it's still a major feature of Halloween in those countries. 

More about Halloween in the UK - the shops are full of Halloween- themed products weeks in advance , and many houses will buy a pumpkin to hollow it out, carve a face in it, and place a lit candle inside . It's a very commercial event , and , like in the USA, come nightfall, children in various disguises , or parents accompanying children, will be out in the chill air knocking on their Neighbours' doors and chanting "trick or treat" as soon as the door is opened.  Halloween parties happen a lot in these countries .   Halloween was first celebrated by the Celts (Irish and Scottish) , and spread to the USA and Canada in the 19th century. From then on, it became popular and was celebrated in many places round the world (Australia, New Zealand, South America and Asia). 

I can remember that for many years there was a bag of sweets (often hastily bought a short time before) that was offered, and quite often came back half - full at the end of the evening. 

In that, I suppose, Halloween in the USA and UK is very similar . 

In Spain,  it's less commercialized . There are lots of Halloween - themed- sweets and foods sold in the shops , and some disguises (mainly for children).  Trick or Treat doesn't really happen that much, so it's a quiet evening if you're not going out. There are Halloween parties too, sometimes held in people's homes, and sometimes at nightclubs or restaurants. 

However you're celebrating it, happy Halloween! 

My Experience of Being Bullied , A Post For Bullying Awareness Month 0ctober 2013

Bullying is very common in all  parts of the world and can have many different causes as well as many forms. As the title of this post says, it's Bullying Awareness Month (in the USA) . You may think "why am I writing this if I'm not from the USA? Well, that's because I have experienced, and still do, experience  kinds of bullying . 

It all started when I was at school, and was because of my disabilities and the fact my teachers and classmates couldn't accept or understand my needs. As I've briefly mentioned in other posts in this blog, much of the bullying took place at Infant and Primary School. There were the usual insults related to disability "spastic" , and much worse. What I didn't know at the time was that another factor that made me a target for bullies was not just my disabilities, but my shyness and lack of self- confidence. 

Once I realized this , however, I was able to try and "toughen up" as I was advised to do , and not be so sensitive to others' remarks. Although this was easier said than done, over the years I did achieve it . Once I moved onto Secondary School, I thought "it's ok, it won't happen here, people are more mature" , but I was wrong: it did, but the difference was I was able to defend myself. I didn't choose to be really rude back, but instead answer intelligently . I avoided the people who I identified as bullies, and that helped too. University was a "bully - free zone", as you'd expect it to be, on the part of he students, but where I felt threatened was by an assistant I had in  my Spanish classes  at Swansea University. I was 18 at the time, and it was the first time I'd been away from home . The University Disability Services Officer paired me with a guy from Murcia . We got off to a good start, as I'd been to the Murcia region on holiday the Summer before, so we talked about that, both in Spanish and English , as I wanted a chance to speak Spanish and him English. Then, after a few weeks, his attitude changed. He seemed to "lose" his enthusiasm for his job helping me, and it turned out he was not in the job out of a genuine desire to help, but just for he money. While I was talking to him about his intentions, he revealed that he preferred working with another girl (doing the same job as he did with me ) and the the had "too much on his plate" as he studied too. I listened and said that wasn't really my problem as he'd volunteered himself to help me , and he also got paid for that. He then started yelling at me , telling me to get away from him . I went to the Disability Office and told the then- Disability Officer Richard Edwards what was going on. He suggested a meeting , during which , it turned out, my assistant shouted at me and him when Richard suggested we get a coffee together and talk things over. I can remember the exact words were "if You think I'm gonna get a coffee with her, you're mistaken" . He walked out of the office and out of my life without so much as a backward glance. Needless to say, I had no more problems on that score as the University found people who actually wanted to do their job properly. The same can be said, luckily, during my time at Reading University. 

The next encounter I had in life with a type of bullying was when I was looking for a job.  It seemed the only thing people could see were my disabilities and not me , as the content of my CV , the fact I always make an effort to look my best,  and my qualifications were of much less importance, or , I'd say , immaterial to some of them.  I had many experiences of people whispering about me in front of me, being called a "liability" , and some making a big show of asking me what Cerebral Palsy and Hydrocephalus are, and not concentrating on the interview questions. Fortunately, there were people who saw me for "me" and gave me work . 

I have also had my fair share of "professionals" such as doctors and social services , saying things out of line, and there have been times when I've felt threatened by a comment on the Internet or a text message by someone I thought I trusted. 

As you can see, my experiences of bullying have been varied , and I often ask myself why I think people bullied me. Sometimes I think they felt intimidated by the fact that although I have the disabilities I do, I can speak for myself and speak my mind , often in a more intelligent way than they think  I'll be able to.  In situations where I was up against competition (education, job hunt) they'd try and play on my flaws . Maybe they were jealous of some aspect of my life too. I'm just guessing here, as many of them weren't brave or upfront enough to say what their problem was , and still don't. One day that'll always stick in my mind was when I went for an interview (the one where they ended up asking me what my disabilities were , and avoiding the interview questions) . I phoned a few days later to see how I'd done and they didn't say much as to why I wasn't successful , so I asked them outright. "does this have to do with the fact I'm disabled"? They tried to pussyfoot round the subject, and so I just said "yes, I thought so, " and hung up. 

Whatever people's reasons for bullying me, I am proud of myself I was able to learn to "rise above" the bullies.  Yes, it hurt me that some of the people who didn't treat me as they should have were people I considered "friends" ,  but I just tell myself I am who I am , and if they don't like me, it's their loss. I'm glad the bullying was verbal , not physical, although people say verbal is the worst kind. I'm glad I was , and am, strong enough to recognize when I feel uncomfortable and/ or threatened , and am able to act on it. 

Spread awareness for Bullying Awareness Month now and always!  

The Weekend Is The Best Part Of The Week

Another week, (and weekend) is almost over , and today the clocks have gone back , so in theory I had an extra hour's sleep. I don't agree with thinking this is really true, as there'll never be more than 24 hours in any one day. As the weather gets cooler, and autumn is well and truly tightening it's grip on the northern hemisphere, I think the positive, flip- side of autumn being here is being able to wear a cosy sweater, drinking more hot drinks , and huddling under the duvet with a great book in the evenings. It's Sunday today ("all day" as my dad says ) .  This weekend, Saturday was slightly different to other ones in that it was the  end of Spina Bifida and Hydrocephalus Awareness Week. I spent all week raising awareness and wrote my last post yesterday . I'm glad I contributed as I have hydrocephalus. 

  I feel a sense of happiness when the weekend is here, as if the fact it's the weekend , and even the WORD- " weekend " - has a relaxing sound to it. Well, here's the part where you as the reader may ask "so, Katherine, what do you do at the weekends?" , I read, I'll say ," I read , ALOT" in that, it's no different from a weekday) and I write, or at least, plan to write. . 

For my birthday last year , (wow, has almost a year gone that quickly? - yikes) my mum gave me a hardback, leopard- print notebook , which I love. I use it for my writing projects . It's not too full so far, that's 'cause I've been drafting my writing on my iPad . Ok, writing' s one  thing I do, I also like leisurely breakfasts . Luckily my fiancée Alfredo does too. We always watch movies in the afternoon on TV or the Internet, and I'm hoping we'll have some popcorn today . I also FaceTime my parents or phone or text friends or contact them via Facebook. 

In short, I like my weekends as relaxed as possible so I can get ready for what the week has to bring. 

I hope you as my readers have a great weekend.  

Spina bifida and hydrocephalus awareness week 2013: day 8: Final Post and Thoughts for Spina Bifida and Hydrocephalus Awareness Week 2013

  Today  is the last day of Spina Bifida and Hydrocephalus  Awareness Week 2013. 

What seemed a lot of days stretching before me just a week ago has gone in a flash. In this blog post I would like to give thanks to all the doctors and nurses who helped save my life when I was in hospital due to my hydrocephalus , and who treated me then as well as everyone who has treated me for this throughout my life. Thank you to Mr Teddy and his team at Great Ormond Street Hospital in London, as well as the hydrocephalus specialists at the John Radcliffe Hospital in Oxford and those who treated me at the Radcliffe infirmary , also  in Oxford. Thank you to ASBAH  in West Sussex , Oxfordshire, and Shine Charity (which used to be called ASBAH ) . 

 I have been aware of efforts to raise disability awareness, but until recently I didn't think about raising it myself. I thought about this more and more,  until one day in September 2012 Katherine Hayward my life with cerebral palsy was born. Even though the word hydrocephalus is not in the title of my Facebook page, the page is all about my life with cerebral palsy,  hydrocephalus and my eyesight difficulties. These disabilities are just a part of me , not all of me, and I'm very glad to have participated in Spina  Bifida  and Hydrocephalus  Awareness Week 2013. 

All of my blog posts are dedicated to people I know and admire with spina bifida and/or hydrocephalus, Tania Nurton, Tanni Grey Thompson,  Ali, who I knew at the University of Reading, all the organisers from Shine charity , and,  in short , everybody with spina bifida and / or  hydrocephalus. I know that my awareness Facebook page and blog posts will not make a massive change to life for people with spina bifida and/or hydrocephalus, but I would like to think that they will at least  be able to identify with, and , maybe learn something ( that would be even better! ) from my experiences. 

Also through my Facebook page and blog I want to reach out to people with cerebral palsy , hydrocephalus and other disabilities to show them that they are beautiful, amazing and that their life is worth living.here are the links to my page https://www.facebook.com/KatherineHaywardMyLifeWithCerebralPalsy?ref=hl

and blog : katherinehaywardmylifewithcp.blogspot.com/es. 

During the week, I managed to blog every day, wear yellow (although I didn't find any yellow makeup! ) , posted on Facebook,  Tweeted , Pinned to Pinterest and really feel I've " done my bit" towards spreading awareness for Spina Bifida and Hydrocephalus . 

As a final thought, if I was asked whether I thought that there was enough investigation for hydrocephalus and spina bifida I would definitely say no and that a lot more has to be done to improve people's quality of life, and the products and support services available . If I was asked to give advice to people I would just say be who you are and follow your dreams in life as life is too short not to! On that happy note, I'll stop writing and there's not much else to say, except I'm really looking forward to the Spina Bifida and Hydrocephalus Awareness Week in 2014, and all those to come. 

World Spina Bífida and Hydrocephalus Awareness Day 2013

Today is World Spina Bifida and Hydrocephalus Awareness Day. Here's some background information about the Day , and how the idea of an Awareness Day for these disabilities was thought up. 

In 2011, The International Foundation for Spina Bifida and Hydrocephalus ( IFSBH  ) General Assembly designated 25 October as the World Spina Bifida and Hydrocephalus Day. IFSBH and its member associations will use the Day to raise awareness about Spina Bifida and Hydrocephalus and the ways in which neural tube defects (NTDs) can be reduced through primary prevention.

As from 2012 the World Spina Bifida and Hydrocephalus Day will be celebrated on the 25th October every year. The World Spina Bifida and Hydrocephalus Day is led by the International Federation for Spina Bifida and Hydrocephalus and its member associations. It is an opportunity to raise awareness and understanding about Spina Bifida and Hydrocephalus. It is also a means to advocate and promote the rights of persons with these impairments.

To mark this day, a website has been dedicated to the world Spina Bifida and Hydrocephlaus Day: www.worldspinabifidahydrocephalusday.com

Why a World Spina Bifida and Hydrocephalus day?

Thanks to the continuous advances in medicine, healthcare services have been drastically improved for people with Spina Bifida and hydrocephalus. But despite this, many children and adults living with Spina Bifida and Hydrocephalus don't have access to the right treatment and care services and stigma and discrimination remain a reality in many countries. Besides, people are not aware about the facts regarding Spina Bifida and Hydrocephalus and ways to prevent neural tube defects.

The World Spina Bifida and Hydrocephalus Day is significant as it reminds the public and policy makers that Spina Bifida and Hydrocephalus are a reality and that is imperative to increase awareness about them and improve the lives of people living with these impairments.

Check the The first World Spina Bifida and Hydrocephalus day page

    

- See more at: http://www.ifglobal.org/fr/what-we-do/world-spina-bifida-and-hydrocephalus-day#sthash.V2OZWc0I.dpuf

Spina Bifida and Hydrocephalus Awareness Week 2013 Day 7 : Adult Life With Hydrocephalus

During this week I have blogged about many of my experiences with hydrocephalus as a child, but I haven't yet posted about my experiences as an adult. Fortunately I have been quite lucky in terms of my hydrocephalus since my last shunt operation at age 11 and have only had once – annually revisions with my neurologist . I have, however continued to have headaches but they had never been bad enough for me to need operating on again, and they haven't been accompanied by sickness or any of the other symptoms that are usually related to shunt failure or malfunction in my case. 

From a young age, I was conscious of the fact that I needed to be well hydrated in hot weather, and that, for example cloudy, humid weather made my headaches worse (because of the increase in air pressure), and I prepared myself for that as well as I could with my parents' help , although it still wasn't at all pleasant when I got very bad headaches due to this type of weather, and it was sometimes hard to explain to people why something as mundane as the weather affects me like it does. 

Whilst I was living with my parents, they were obviously the people who helped me manage my hydrocephalus, and once I went to university, I made my lecturers, carers and close friends aware of hydrocephalus, so they knew what to do in an emergency. I took comfort in the fact that my shunt was working properly and that reduced the worry for me about something going wrong with it. However , I was always very conscious of the fact that, no matter how well I was feeling, there was always the possibility that something could happen to my shunt at any time, and I know this is still the case. This is in the back of my mind every day. 

I am also aware of things like the fact that I have difficulty with resting  my head and feeling like it's comfy when I'm in bed, or in my wheelchair for  example, so I have someViscoelastic pillows which are very comfy and really help my head and neck rest. I find it very hard to be comfortable when sleeping because of the posture  of my head and neck, as the wrong posture means that I feel nauseous, and in pain  and sometimes vomit, as the posture will make me cough. I had tests for my coughing, and it wasn't allergy- related, it's posture- related as my pediatricians confirmed years ago. Posture is difficult for me due to my Cerebral Palsy too, as I struggle to sit upright and tend to slouch. 

The the other things I have noticed are  that my skin around my shunt on my neck and my abdomen will sometimes feel very itchy and it will be accompanied by a throbbing sensation there. This can be quite offputting at times, and I just go and rest when it gets very uncomfortable. I still have a shunt alert card in my purse and have told my fiance all about hydrocephalus and he has also asked my neurologist about it, and understands it well. I feel well prepared and well informed to be able to help others who have hydrocephalus.

Spina Bifida and Hydrocephalus Awareness Week : Day 6 : Going On Holiday With Hydrocephalus

Everyone loves a holiday now and then, and I love travelling and learning about different cultures. You may think that as hydrocephalus is a hidden disability, there is nothing to worry about when travelling. If you think this, sadly you'll be wrong, and more care has to be taken when travelling with hydrocephalus than meets the eye. Luckily, I was born in a country where hydrocephalus is understood and treatment can be got hold of relatively quickly. As a child, my parents took me and my sister on family holidays mostly within the UK, to areas such as Devon Dorset and Cornwall. We went to Dorset every year.

 However, when we lived in West Sussex it was easy to get over to North France as it wasn't that far away. As I grew up we went further afield and when I was 11 we went to the USA to see my family. This was the longest flight that I had ever been on, and I have never been to the States  before. It was also important for me as at that time I have just come out of hospital from having my ICP monitor fitted and then taken out so I was exhausted from the surgery but really glad to be going on holiday and really enthusiastic about seeing my aunts uncles and cousins and about us all going away together as a family.

 I  also felt a bit self-conscious as I had a bandage on my head from my ICP monitor had been put in, and my head had been shaved for the operation, so my hair was still growing back. I was glad to finally be out of hospital though ! When I was 12 I went to Spain for the first time with my school as I was learning Spanish there. As the school already knew about my disabilities I didn't have to explain too much to them about my hydrocephalus again, just to explain to     them that if I needed to go to hospital I had to be there within four hours of my symptoms starting. As it turned out, I didn't have to go to hospital but I was relieved about, .but even then, my Spanish was good enough to have been able to communicate with the doctors and nurses if it were  necessary, (and also if I were concious and alert at the time).  

One setback I can remember having on holiday was when I went to the States and I was at my auntie Jane's house. We'd gone out for the day ,   and I started feeling really ill . I had a headache and was vomiting and my family  got really worried because I didn't have health-insurance (due to being unable to easily access it as the insurance companies didn't want to give it to me as I have complex, long-term disabilities and needs)  but it turned out to be sunstroke, and after a few days rest I was fine.

 There have also been times in my life when my parents and I and my sister were planning to go away together on holiday and I started having a same symptoms of coughing headaches and vomiting. I was at school for quite a while and my parents cancelled the holiday. My sister went on holiday with my auntie, uncle and cousins ,  and I went on holiday to Menorca with my parents when I felt better. I was  disappointed that we couldn't go on holiday as a family, but pleased  I still got a holiday. Another time, we were on holiday in the UK and just about to check into where we were staying when I felt shaky and dizzy and started vomiting. We cancelled the reservation and came home. I felt guilty , but also knew it  wasn't my fault.  Back then , ASBAH didn't have the Shunt Passports  Shine introduced a few years back. They could have been useful  to  me  as a shunt passport contains  the personal details of the  person with a shunt as well as all their most recent  shunt scans.  It explains what hydrocephalus is in the most common European languages and if a specialist at a hospital sees that they'll know the person has hydrocephalus and be able to treat them more quickly  and  effectively. 

Despite not having this (although I'm really considering getting one) , in really glad and grateful I've not  yet  ended up in hospital  due to shunt problems abroad . I've written this blog post to show anyone who thinks flying with hydrocephalus could be a problem that in fact it's not if you take the right precautions. Many times when I was younger,my parents got my then-GP to write a letter saying I was OK to travel,  as people with hydrocephalus are more sensitive to changes in air pressure , and this makes flying unpleasant sometimes.  It still makes me uncomfy but I guess I've just learnt to deal with it as I know it'll make me feel uncomfy but I know the feeling doesn't last forever . For example, my ears pop and I get headaches when flying but luckily I don't get altitude sickness so am able to read and listen to music. When the plane  landed , it takes awhile for my ears and head to clear , but everyone has that problem, it just takes longer in my case due to my shunt. I also get neck pain and an uncomfortable cramping feeling in my neck when flying. I just suckedd a hard sweet (candy) , and waited to  feel better. 

All this has never stopped me flying and never will ,   It'll only stop me if I'm too ill through shunt symptoms to fly. 

Today's Thursday and I've covered lot of my personal experiences living with hydrocephalus  so far .  There are only 2 days left of Spina Bifida and Hydrocephalus  Awareness Week 2013 , and I'm still undecided what to write about next. It'll be a surprise I think. 

Bye til next time!