Thursday, 31 October 2013

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! 



Wednesday, 30 October 2013

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). 
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! 


Tuesday, 29 October 2013

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!  


Sunday, 27 October 2013

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.  

Saturday, 26 October 2013

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. 

Friday, 25 October 2013

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.
 
- 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.

Thursday, 24 October 2013

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!            

Wednesday, 23 October 2013

Spina Bífida and Hydrocephalus Awareness Week : day 5 My experience of hydrocephalus operations and being in hospital



My history of operations due to my hydrocephalus began when I was only two weeks old which was when I was diagnosed with hydrocephalus . I was much too young to be able to remember the operations I had when I was very young. Now  the years have passed,   I have  had to rely on my medical history over the years to gain some insight into operations I had and what my recovery was like. As I've said before in an earlier post, when I was born I experienced a lot of complications from my extremely premature birth, and my vulnerability then was also seen when the surgeons tried to carry out operations on me as some had to be abandoned as I was too ill to cope with going through an operation at that time. The first shunt operation was to insert a VP shunt on the right side of my brain. I had a shunt on this side of my brain for years and it was replaced there  everytime it  failed until the surgeons decided to one day insert the shunt on the left side of my brain and leave the pressure valve from that one and disconnect the catheter from that side, so I have a working shunt system on the left side of my brain and one that doesn't work (known as the" redundant"shunt ) on the right side. 

I don't  have too many memories of being in hospital with hydrocephalus as I had all the problems with my shunt when I was a child.   I'll talk about the things I do remember. 

I remember that a lot of my treatment and operations for my hydrocephalus and my shunt was done at the Radcliffe infirmary hospital in Oxford, and that each time I was ill I would be on the children's ward there. Anybody gets bored when they're in hospital and I missed my family and friends a lot. From the moment I was back on the ward after the operation, I can remember I was hooked up to a drip for fluids as I couldn't eat or drink anything as very often after the operation I would get the symptoms of sickness and headache that I had beforehand. Once or twice I had to be operated on again quickly after the operation as something was wrong with the positioning of the shunt, or how my body accepted it. I can also remember that I looked forward to family and friends coming to visit me in hospital and once I even got a visit from my classmates and teacher from primary school – they had all made me get – well cards. I remember that I made a friend in hospital, his name was Chiro , he and his family were Italian and lived in Oxford. He was about the same age as me at that time and he was in hospital because he had cancer. My mum and his mum were quite friendly, as having children in hospital created a bond between them. One memory I have is of playing board games – especially – Connect  4 – on the days that we both felt slightly better. We got on well.Chiro   lost his fight with cancer and I can remember my mum and I feeling very sad but my mum kept in touch with Chiro's mum long after I had come out of hospital, and as I was growing up.  At some point in my life my hospital stays were split between the John Radcliffe and Radcliffe infirmary hospitals, in Oxford.   I have got another memory that has always stuck in my mind was when I was in hospital in the John Radcliffe and I felt really fed up one day and wanted to go home was really grumpy and yelled at a nurse. Something I'll always remember is the feeling of being able to eat food again after having been drip fed for a long time. I can remember they asked me what I wanted to eat, and lots of things came to mind such as chocolate and anything sweet (I have a really sweet tooth!) When I was young, I also loved Marmite  sandwiches,  so that was the first thing I asked for: a toasted marmite sandwich. Another thing I'll never forget was the excitement when they discharged me from hospital, and being back home again. Some of the worst memories for me were having the symptoms I had , being scared about the operations , taking my medicine and having my stitches out. 

I have always been very inquisitive, and was even as a young child. When I was in hospital I would always ask the nurse before the operation what they were going to do to me and whether it was going to hurt me. She obviously explained it to me in a simplified way, as you would to a child, but I think her explanation reassured me made me feel braver . I also remember that a measure of bravery in the hospitals when I was there (at least those hospitals) was that if a child was really brave they would receive a badge with a hedgehog called Herbie on it that said"  I'm as brave as Herbie "  . I still have the badge today.
I hated taking my medicine because one was bright orange and the other was bright yellow banana flavour. 

Since that day I have never really liked banana flavoured medicine (!) .Sometime after I was discharged from hospital, mum took me to the local health centre to have my stitches taken out of the part of my skull at the front of my head where I had an operation to insert an intracranial pressure monitor ( ICP). I can remember that it was a bit painful and that the nest wasn't very nice. That was when I was 11 and the last shunt – related operation I had to think what got me through my hospital stay that time was the visit from my grandparents, parents and sister.I can remember that recovery that operation was difficult and especially frustrating as for 24 hours I had to have my head takes to the pillow and was unable to move it so that the doctors and nurses could monitor the signal from my brain. I can also remember feeling incredibly dizzy and feeling) was moving. Throughout my hospital stays, I always had the support of friends and family, and my mum often stayed overnight in the hospital with me so that I wouldn't feel alone. My sister Nicky and I have always been close, and she would get really upset whenever I was in hospital. My parents were also worried for me every time I was operated on as they didn't know how or if I would come through the operation. As you see from this blog post, I went through a lot due to my operations, but looking back I think I can definitely say that I was "as brave as Herbie" ! 

Tuesday, 22 October 2013

Spina Bifida and Hydrocephalus Awaremess Week 2013: day 4- How My Hydrocephalus Affected Me When I Was In Education

It's day 4 of Spina  Bifida And Hydrocephalus Awareness Week , and today I want to write about how my hydrocephalus affected me when I was in education, 
As I've written in other posts, it took awhile for my parents and doctors to discuss the feasible possibilities open to me in the educational world  and where, and how, I'd study. I started my education at a special school called Chailey Heritage for children with severe disabilities and complex medical needs, which was in Sussex. While there I had one to one care and support as well as therapy, and there were doctors and nurses on-site. My parents made sure to prepare them as well as they could regarding my needs and when I ask them about it, they say the school did a very good job of meeting my needs. I think I would have stayed there if it wasn't for the fact my parents decided to move from Framfield, a small village in the Lewes/ Uckfield área of East Sussex, to Wallingford , a Saxon Market town in Oxfordshire. They decided to try me at a private school for about a term before we left the area. 

Once in Oxfordshire, I attended St Nicholas CE Nursery and Primary School. When I was 11 I went on to Fir Tree Junior School , also in Wallingford. It was during my time at both these schools when I had most problems with my shunt , and therefore had to be operated on the most, at times spending up to 6 weeks in hospital at a time. 
I missed a lot of school due to headaches, sickness and not feeling right, Quite often when I did go to school, I got sent home as I felt unwell and couldn't concentrate on my schoolwork despite the fact I had a permenant carer in my classes with me due to the intensity of my headaches which were also accompanied by dizziness and visual disturbances, like blurred vision, black spots in my visual field  and feeling like I was going to pass out. I remember also experiencing my vision going completely black despite the fact I was awake and my eyes were open. That was very scary. 
During these years, my permanent carer Avis Rance, who was with me at Nursery and Primary School , and Joy Shelton, who was with me at Secondary School, were invaluable to me . 
They also did what they could to educate the teachers and my classmates, regarding my needs arising from both my Cerebral Palsy and Hydrocephalus , but quite often their efforts proved futile , instead falling on deaf ears. This was the late 1980s to early 90s , and I was the only disabled child in that mainstream school. Often, the teachers would call me lazy and unwilling to cooperate and / or learn, and always doubted my ability to learn. I was a very enthusiastic student and discovered my love of reading and poetry, which have stayed with me to this day. I remember the lessons taught by a supply teacher , Mrs Wainwright, which were particularly enjoyable for me, as I felt then (as I do now) that it was easy to lose myself in a book and forget about bad experiences I had) . 

The following is from a Shine Charity Factsheet about behavior in children with hydrocephalus  

Children with hydrocephalus typically have problems with understanding language, concentration, short term memory and processing information. All of these, potentially, can have an impact on behaviour. If you can ‘t remember instructions then you won’t be able to carry them out. If you have trouble transferring knowledge to new situations it may be that you can do something in one place but not another. If you don’t understand jokes your friends may think you‘re a bit ‘odd’.

The impact that hydrocephalus can have on learning and behaviour varies with each individual. Some people may have very few problems, where as in others the consequences can be much more serious. It is important to remember that children with hydrocephalus often have a number of specific learning difficulties, which may mean that they learn in a different way, and need different strategies to help them. Additionally, if children are struggling at school, either academically or with their social relationships this can have a detrimental effect on self- esteem, which in itself can cause behavioural difficulties. If you think this may be an issue it is important to talk to your child’s school.


In my case, I had problems with spatial awareness, and still do. This is a consequence of my  CP as well as hydrocephalus . Subjects like Maths , technology, Science and Art were difficult for me due to hydrocephalus , but also due to my Cerebral Palsy.  This is because I'm unable to " think in 3D" as my OT once put it.  I am unable to judge where my body is in relation to the space it's in, and that makes movement and coordination difficult, 


I was deemed to be quite intelligent academically, as I passed all the tests for intellectual reasoning and ability , but I really struggled on the social side of things. In fact, when I was almost 5 and the doctors and educational psychologist were discussing where I'd be best at school with my parents, they thought overall that Special Education would be better to cater for my complex and severe needs, but could see I was intelligent and had the potential to be able to learn with the right assistance from an early age , so they were in agreement with me trying Mainstream education. This was their final decision but they were very aware I was vulnerable .  I was incredibly shy and insecure as well as unsure of myself , and doubted myself a lot and was reluctant to accept, or recognize, a compliment, as I didn't know if the person was genuinely giving me a compliment or not , or if they were pitying me. I also couldn't recognize if people were joking , or sarcastic or not , based on their tone  of voice, and due to my eyesight , couldn't interpret their facial expressions. 

This further affected my ability to make friends and I felt alienated and left out. 


  The doctors talked to my teachers and support workers often, making sure I was settling into school ok . I was very sensitive , and got bullied a lot. I wasn't a "problem child " but there were some teachers who treated me like one . 

Once I got to secondary school, I felt more confident in myself, but was still sensitive to people's comments and would get openly upset. I felt there was a lot of competition , being in an all- girls school, to be the "prettiest" "most fashionable" "most popular" , and often felt I wasn't good enough due to my disabilities, but decided I'd have to ignore those feelings if it were to do me any good and make me have even more confidence in myself for the future. This tactic worked, and people started looking up to me. I was teased and asked about my scars when people saw them (for example when my carer changed me when we were going swimming) .  Throughout my life educational career, I have had regular CT scans to check my shunt was draining the cerebrospinal fluid ok , and had to miss quite a few hours of school for hospital appointments, so sometimes my days were a bit broken up, between school and home. I secretly welcomed these absences from school though, as for me, not being there was better than facing all the bullying, insults and misunderstanding I associated with school . For me, it was a hostile place. Getting through the school day was hard work too , due to the effort my muscles had to go through due to my cerebral palsy and hydrocephalus .  Despite this, I loved learning. Looking back, I'm proud of my accomplishments at school as they meant I was able to enter University. I struggled making friends there too, but also had some great ones. I had carers and note takers there , and was so proud when I graduated. I often look back and remember the people who teased and mocked me throughout my educational career , ask myself what they'd think of all my accomplishments, and wonder if they'd be embarrassed or sorry about how they treated me. 

 I'm proud I made it through mainstream education , and that my shunt didn't let me down after age 11 . 

Sunday, 20 October 2013

Spina Bifida and Hydrocephalus Awareness Week 2013 day 3- My Symptoms When Things Went Wrong Plus Useful Definitions

So far I've written about my birth and how I came  to have Hydrocephalus as well as the operations I had. Today I want to introduce you to some key terminology relating to shunts and hydrocephalus.. Anyone who has hydrocephalus is also very familiar with the terms shunt "blockage" shunt "failure"  and shunt "fracture"  . 
A shunt blockage occurs when the shunt is blocked with something , or when too much Cerebrospinal fluid (CSF) builds up in an area of the catheter (or tubing) the CSF flows through. shunt "failure" is when the shunt stops working, and shunt fracture is when the catheter gets damaged . 
I have had experience of all three of these problems with my shunt over the years . 

When I was 6, my parents noticed I had symptoms of really bad headaches and vomiting, so I was taken to hospital by them. Once there, my brain and abdomen were examined via a CT scan.  That didn't show anything so they did another one., which showed the catheter had become detached from the pressure valve and was lying , useless, in my brain  .That's an example of a fracture  I had failures and blockages at other times but can't remember how old I was at the time.  I know about what happened when I was 6 as it's in my medical history and my dad has told me. 

I felt so Ill, and the headaches and nausea were so intense I couldn't concentrate at school. 


Possible signs of chronic shunt blockage may include:

fatigue, general malaise, visual problems, behavioural changes, decline in academic performance, being just onot right» from the carer's point of view.

If a shunt blockage is suspected, medical advice should be sought from your neurosurgical unit within four hours of acute symptoms starting. In shunt infections, symptoms vary with the route of drainage. In ventriculoperitoneal shunts, the symptoms often resemble those of a blockage.

This is because the shunt becomes infected and the lower catheter is very often then sealed off by tissue.

There may be accompanying fever and abdominal pain or discomfort or redness over the shunt site. In ventriculo-atrial shunt infections, fever is present in most cases though often intermittently. Anaemia is frequently present, and sometimes skin rashes, along with joint pains.

In contrast to ventriculo peritoneal shunts, such infections may not appear for months or years after the operation when they were contracted.

Various tests can be carried out for shunt infections and medical advice should always be sought if an infection is suspected.

How are shunt problems treated?

Shunt blockages which are causing illness usually require an operation to replace or adjust the affected part of the shunt. Shunt infections are usually treated by removal of the whole shunt and a course of antibiotics before insertion of a new system. Modern approaches to antibiotic therapy mean that such treatment can be expected to succeed, in most cases.

Endoscopic Third Ventriculostomy

An alternative treatment may be a third ventriculostomy, where a small hole is made in the floor of the ventricle to divert the flow of CSF. This treatment, if successful, avoids the need for a shunt. However, not all types of hydrocephalus can be treated by this method and it is not available in all neurosurgical units.

Spina Bifida and Hydrocephalus Awareness Week 2013 : day 2 - The Treatment I Have Had For Hydrocephalus So Far In My Life

The treatment I had for hydrocephalus started when I was two weeks old and diagnosed with it. The diagnosis wasn't picked up before then as my mum didn't have scans, and the doctors had to stabilise me in terms of my breathing problems, jaundice and other infections, as I was severely ill. The very first operation they did was an emergency operation to insert what is known as a Rickham Reservoir, which is a tube inserted into the spine or brain to drain off excess cerebrospinal fluid. I was extremely ill during the operation so it had to be abandoned. A Rickham reservoir is not as permanent as a shunt , and is inserted to drain fluid, and measure intracranial pressure ( pressure inside the skull and brain). 

Before any operation was done, I had to have lots of blood transfusions  and lumbar punctures (spinal taps) . A lumbar puncture is where a sample of cerebrospinal fluid is taken from the area surrounding the spinal cord, to relieve pressure on the brain and spine.  It is also taken to test if the fluid shows infection in the area of the brain or spine . If it's clear there's no problem , but if it's yellow, or brown (like mime was) there's a serious problem . 

After that, I had my first  ventriculoperitoneal ( VP )  shunt inserted at Great Ormond Street Hospital in London. A shunt is a device that goes from my brain to my abdomen to drain of the excess cerebrospinal fluid from my brain and spine to my abdomen, where it's absorbed into my bloodstream. There is also a shunt known as a VA shunt which goes into the heart , but my heart was too weak to put in that type of shunt. 

When I was six years old, I had to have my shunt replaced at The Radcliffe Infirmary in Oxford as there was a fracture in the tubing in my neck. When I was eight, there was a buildup of cerebrospinal  fluid in my spine which had to be drained off. When I was 11 my shunt had to be replaced again. Since then I have had to have shunt replacements, and have had the shunt I have now for 20 years. I have also had several intracranial pressure monitors inserted, last of which was it when I was 11 and it was inserted for 24 hours to monitor the pressure inside my brain. 
Here are pictures of A) a Rickham Reservoir
B)  a VP ahunt and  C) an Intracranial Pressure Monitor  (ICP monitor) .  All the operations I had were long , complicated brain surgeries , and I have scars on my skull , chest and abdomen.  The recovery was long and difficult. 
In the next post I'll talk to you about what the terms shunt "failure" "fracture " and " blockage" mean and the symptoms of hydrocephalus I had. 

A




Saturday, 19 October 2013

Spina Bifida and Hydrocephalus Awareness Week Day 1: How I Was Diagnosed With Hydrocephalus

Today sees the start of Spina Bifida and Hydrocephalus Awareness Week 2013. I'll write a post here each day with my experience of having hydrocephalus . As I have had hydrocephalus since birth, I feel it's best to start from the beginning. I'll take you back 31 years ago when I was born on 22 December 1981. I was born 3 months early and had a grade 4 brain hemhorrage on both sides of my head which revealed on a CT scan that I have hydrocephalus as well as spastic quadriplegia Cerebral Palsy.  The doctors suspected this due to the increase in my head size since my birth which indicated the level of CSF was out of control and my brain and skull were swelling badly. 

Hydrocephalus literally means "water on the brain" . The "water" is cerebrospinal fluid (CSF ) which bathes the brain and protects it . On the same scan the doctors saw I had Spina Bifida Occulta (SBO) which is the mildest form of Spina Bifida where the outer part of some of the vertebrae is not completely closed.The splits in the vertebrae are so small that the spinal cord does not protrude. The skin at the site of the lesion  be normal, or it may have some hair growing from it; there may be a dimple in the skin, or a bithmark. 

 The hydrocephalus I have means I can't regulate the level of CSF inside my brain or re absorb it.  My hydrocephalus was caused by my premature birth and it's thought also by the time I spent on a ventilator in the NICU. I needed life support from the minute I was born until two weeks after my birth. 

Tomorrow I'll blog about the treatment I've for hydrocephalus in my life so far. 

Until then, I wish you a very happy Spina Bifida And Hydrocephalus Awareness Week 

Friday, 18 October 2013

Spina Bifida and Hydrocephalus Awareness Week 2013


Tomorrow marks the start of Spina Bifida and Hydrocephalus Awareness Week 2013 . It runs from 19-26 October this year . 

I found out about this a few years ago while looking on the Internet.  There are many organisations around the world that help people with these disabilities ,and Shine i(formerly ASBAH) is the UK one. 


As you maybe know by now (and also if you don't) every Awaremess Cause is resented by a specific colour. Both Spina Bifida and Hydrocephalus are represented by a yellow ribbon and the colour yellow in general. I'll definitely be wearing yellow during all those days. I'm currently looking to buy a yellow eyeshadow (I love makeup and I always wear an Awreness colour on a specific Awareness day)  , and already have a yellow tshirt and socks. This cause is important to me as I was born with hydrocephalus as well as Cerebral Palsy , and was diagnosed with Spina Bifida Occulta as a baby . 
I'll post various photos, videos and other awareness - related posts here on my blog, and on my Facebook, Twitter, Pinterest and Instagram account pages. 
WEAR YELLOW FOR  HYDROCEPHALUS AND SPINA BIFIDA ! 


Sunday, 13 October 2013

Dewey's Read-a-thon October 2013 : End of Read -a-Thon Post

So, as we say goodbye to another read-a- thon, which I thoroughly enjoyed, I'll answer these questions I found on twitter today : 

I feel exhausted but exhilarated and am so proud and pleased I managed to read and blog for 14 hours ! 


Here goes.....


Which hour was most daunting for you?

It would have to be hour 13 when I was tired , and just had to give into sleep  no matter how much I wanted to keep reading ! 


Could you list a few high-interest books that you think could keep a Reader engaged for next year?

One Day by David Nicholls 

The Horse Whisperer by Nicholas Evans  

War Horse by Michael Morpurgo 

The Lion the Witch and the Wardrobe by CS Lewis

The Smoke Jumper by Nicholas Evans  


Do you have any suggestions for how to improve the Read-a-thon next year?

I'd definitely get ready earlier and use audiobooks as well as ebooks . 


What do you think worked really well in this year’s Read-a-thon?

The fact I prepared a few days before and had a timetable 


How many books did you read?


What were the names of the books you read?

One Day by David Nicholls 


Which book did you enjoy most?

One day by David  Nicholls 


Which did you enjoy least?

None


 If you were a Cheerleader, do you have any advice for next year’s Cheerleaders?

I was a Reader 


How likely are you to participate in the Read-a-thon again? What role would you be likely to take next time?

Extremely likely. I'll de finitely participate . Maybe a reader or Mini Challenge leader

Dewey's Read-a- Thon October 2013 hour 14

Just a quick update on my last post


The final statistics for my Dewey's Read- a - thon  October 2013 are: 


Readathon Summary : hours reading : 14 


Pages Read : 1,026 

Blogs Posted : WordPress : 14 Blogger : Katherine Hayward my life with cerebral Palsy: 14 Blogger : Authour in a wheelchair : 14 

Tweets: 55 

Blog Comments Received: WordPress : 11 Blogger Katherine Hayward my life with cerebral Palsy: Blogger : 2 Authour in a wheelchair :1

Blog Comments I Made: WordPress : 10 Blogger Katherine Hayward my life with cerebral Palsy: 4 Blogger : Authour in a wheelchair : 0

Twitter followers gained : 9 


Really enjoyed myself and can't wait til the April 2014 Readathon .

Dewey's Read-a-Thon October 2013 hour 13

It's 12 noon for me now, but I'm still reading. I'm on page 928 now , and Dex has got over yet another hangover and gone to see his parents at their house in Oxfordshire. Fueled by energy from my breakfast, I'm determined to read more.


Readathon Summary : hours reading : 13

Pages Read : 928

Blogs Posted : WordPress : 13 , Blogger : Katherine Hayward my life with cerebral Palsy: 13 Blogger : Authour in a wheelchair : 13

Tweets: 51

Blog Comments Received: WordPress : 10 Blogger Katherine Hayward my life with cerebral Palsy: Blogger : 2 Authour in a wheelchair :1

Blog Comments I Made: WordPress : 10 Blogger Katherine Hayward my life with cerebral Palsy: 4 Blogger : Authour in a wheelchair : 0

Dewey's Read-a-Thon October 2013 hour 12


1:00  


writing this now as I was too tired last night to write it. Last night before going to bed, I checked twitter and Facebook again. For updates, posted a few of my own , and put my iPad away for the night. I'm really proud of he reading I've done so far , and plan to continue.

Dewey's Read- a- Thon October 2013 hour 11

I've been checking Facebook and Twitter plus updating my Facebook pages. It's been a great day so far. I wonder how much more I can read, I'm on page 867 now. Keep going everyone!!!

Saturday, 12 October 2013

Dewey's Read- a - Thon October 2013 hour 9

I've been writing a blog entry in Spanish on my Spanish blog, as today is the Spanish National Day. I don't think there's a read a thon in Spain yet , so I wanted to tell them about it. I drank my herbal tea too . Ok now, back to my reading .....

Dewey's Read-a-Thon hour 10 October 2013

I'm now on oage 853 ,and still really enjoying One Day. I've just read some background about how Dex met some of his ex girlfriends and friends , and his social life as a London club - goer. Now I'm reading about Emma's life. I'm feeling a little tired now but pleasantly relaxed , and am sipping a hot chocolate.  At  this stage in the story, emma has matured and got rid of her velour hair scrunchies and lives in her own flat which sounds nicely furnished.  I'm planning to read for another hour or so.hope you're still enjoying the Readathon!

Dewey's Read-a- Thon October 2013 hour 8

20:00 


I'm now  on page 798 , and have started Part 2 of One Day. This part starts off with Dexter's story., and covers the years 1993-1995. I like the way each part of the book covers different years of Emma and Dexter's  lives. I've just had some chocolate and cookies. Those snacks  seem fitting  comfort food for a good book. Now I think about it, I think I prefer the book to the film, although they're both very good and similar. It's interesting to know Dex loved in various parts of London and Oxfordshire, as both these places are familiar to me as I grew up in both those areas . The book has some very romantic parts , and I can see the closeness between Em and Dex.

Dewey's Read-a-Thon October 2013 hour 7

19:00 

As the hours go by, I'm feeling proud of all the reading, and blogging ,  I've done today. I've just eaten and was watching a bit of TV and I'm now reading again. I wish in some ways that the read-a- thon was longer, but I'm really enjoying it. Ive got a system going where I'll use the apps of my blogs to blog as they load quicker, and my blogs are actually looking quite cool. Thanks again for all the comments I've got on all my blogs today. Keep going everyone who's reading!!!!

Dewey's Read-a- Thon October 2013 hour 5

17:00

Hour 5 went by in a flash and  now I really can't put this book down! One Day also has it's funny parts- Dex and Em ending up on a beach that turns out to be a nudist beach , and trying to find a place to stay on the island. It seems they really do have feelings for each other, and the atmosphere is described really well: I as the reader can almost feel the heat as the sun beats down and smell the suncream and the barbecue on the beach.

Dewey's Read- a-Thon 2013 hour 6

18:00


It's time for me to tear myself away from my reading to eat . I'm not keeping to my timetable as far as mealtimes are concerned, but I'm not surprised , as reading always relaxes me so much I lose my sense of time ! :) what I didn't expect was for this book to have me so hooked. The film was good , tut I didn't know what to think of the book , but so far it's great too .


Back soon

Dewey's read-a-thon October 2013: hour 4

16:00


I'm now on page 579. It's 1992 and Em and Dex are on a cruise holiday round the Greek Islands. A year ago, they had a chat where it turned out Dex had been seeing various other women besides Naomi. He confessed he still had feelings for Em and wanted her to leave her job at a Mexican restaurant . Back then he was into drugs and had one hangover after another . She had had a brief relationship with another guy and got on well with a work colleague . They've decided on a set of rules if they are to get on again . I like the way this book is written and it's easy and relaxing to read. I'm finding this read a thon relaxing , as were all the others I participated in. I've commented on some other participants' blogs too. I can see there's a great atmosphere! Wonder how much I'll read by the end if the challenge?


Dewey's Read-a- thon hour October 2013 hour 3

15:00


Page  502. It now turns out Dex knows someone who's called Naomi, who he works with on a TV show. At this point in the book, I cans really sympathise with Em about her disappointment over how he's changed since he's been away, and  her suspicion as to whether or not there's something between Dex and Naomi.  I actually have the same sinking feeling in my stomach as her.  That ,means this book is good if I'm feeling the same as a lead character . I'm glad I have my iPad , as reading ebooks is faster and easier for me than reading paperbacks . I've just checked the lottery results (no luck) , and am just about to have a healthy banana as a snack . 


Determined to read on, I'll be back in an hour

Dewey's Read-a- thon hour October 2013 hour 2

14:00

Still enjoying this book. I've just seen a comment on my Blogger blog which lets me know I may need a box of tissues when reading the book- so far, what seems to have been a great relationship between Em and  Dex is hanging in the balance after he's  back from Thailand after teaching there . We'll see what happens .....

Dewey's Read-a- thon October 2013: hour 1

 13:00 


The day is finally here , 12 October 2013 , the first day of the October Read-a- Thon. I'm very excited and determined to read as much as I can . I always find the Read-a- thon very relaxing. I wasn't sure if I'd make the beginning on time, as I overslept (due to reading late last night ) but I did. I guess it doesn't matter what time I started, the important thing is  I'm participating . How's your first hour going? My plan is to update every hour. So far, I've done well at my plan to be more social , as I followed so,e blogs on both Blogger and Wordpress as well as youtube channels. It took me ages to work through the list of participants but it was well worth it. I'm now on page 460 of One Day by David Nicholls , and it's kept me riveted since I started it a few days ago. Thanks so much to everyone who commented on my Wordpress blog yesterday. I've had no snacks so far , just breakfast, given I don't snack much during the day.   

Friday, 11 October 2013

Dewey's Read- a- thon October 2013

So tomorrow is the start of  Dewey's read- a- thon October 2013  . It'll be my 3rd one , and marks a year of  read-a-thon participation , and so far it's been really enjoyable . I'm being much more sociable this time , and have spent the day finding blogs to follow on WordPress and here, and already have some new twitter followers. I was originally just going to blog from the My Reading Paradise blog on WordPress, but saw there are loads of people who're participating in the Read-a- thon who have Blogger blogs , and want people to have the chance to follow my progress here .  It's almost 11 pm now and I want to get some sleep (not without reading first , of course! ) so I'm ready for tomorrow . The first book I'll be reading is One Day by David Nicholls .

Wednesday, 2 October 2013

HAPPY WORLD CEREBRAL PALSY AWARENESS DAY 2013

  As I write this on the eve of Cerebral Palsy Awareness Day 2013, I'm conscious that I'm very excited about tomorrow whereas other people may not be so into raising awareness as I am. People can raise awareness in different ways , through charity events, writing blogs, articles, producing awareness pamphlets leaflets and suchlike . I decided to raise awareness by creating a Facebook page entitled Katherine Hayward my life with Cerebral Palsy , which turned a year old on 19 September this year. This page began as a small seedling and has grown into something bigger than I could have imagined, thanks   to  the support of my page fans, who have provided encouragement and support for me on this incredible journey. Creating a Facebook page , to some, may seem a predictable way to promote my awareness work , but it has helped me get my voice heard on the awareness front. I'd never considered awareness work before, although I'm a naturally sensitive person towards others with disabilities of all kinds , due to having disabilities myself. I know and experience first- hand what it's like to be rejected, doubted, put- down, criticised stared at and bullied because of my complex needs and multiple disabilities. But that said, the mix of spastic quadriplegia cerebral palsy, hydrocephalus which requires a shunt, and severe eyesight difficulties which manifest themselves as nystagmus, bilateral convergent squint , hemianopsia and being registered legally blind as well  as being an electric wheelchair user with added muscle spasms, convulsions and severe incontinence are just a part of who I am. 
I don't see myself as any different to anybody else, I laugh, cry, fall in love (and did 7 1/2 years ago and am  still very much in love with Luis Alfredo Pérez Soto) and am very girly despite my 31 years of age, I love shopping, fashion and beauty and listening to music. I've already set goals for this year's World CP day , to spread awareness, obviously, but also get to know people and blog more. I've also got a video in the pipeline , so it should be an interesting day. I hope I can get more people to send in photos for the video if they want to be featured there, but I'll totally understand if they don't. Thanks very much in advance to those who do wish to take part by sending me a photo. 
Anyway, it's late for me now and I must get some rest. When the time comes , wherever you are in the world, I hope you have a nice rest and wake refreshed to be able to enjoy tomorrow to the full, as , for one day only, the World will come together to celebrate having CP . 
See you tomorrow for the big day! As I write this, the clock shows midnight, so in a way the big day is here.....