Wednesday, 29 October 2014
Everyone has challenges in life, whether it is passing an exam or getting a job. The challenges in my life have been many, from the moment my identical twin sister and I were born 32 years ago at Kingston Hospital, Kingston upon Thames, UK. She was born minutes before me, and from the moment we were born, there was the struggle to breathe, to survive. Natalie did not get the opportunity to do either of these things, as she passed away 9 days later. I won my struggle two weeks later, but it came with a price: I was diagnosed with spastic quadriplegia cerebral palsy and hydrocephalus due to a severe brain bleed which almost claimed my life on more than one occasion.
My second challenge was coming home, where I learnt to suck and swallow after another long struggle. I was judged as being globally developmentally delayed, as I did not reach milestones, but with time I did.
Education posed a huge struggle for me, and at every turn I was faced with challenge after challenge, but, as I said in earlier blog posts, I managed to get a good education and a degree. The other constant challenges I faced, and still do, are society's acceptance of me and my disabilities, and the assumption that as I am as intelligent as the majority of people (here, I will not use the phrase 'of normal intelligence' like the doctors did in my history, as everyone is clever in their own way), I can sort out the struggles I face just by 'being positive'. Believe me, it is really not that simple or clear-cut, especially when trying to get housing or publish my first novel, both of which I am trying to do at the moment.
In spite of all these adversaries, I love a good challenge-who doesn't? unless you are naturally very shy, or very lacking in confidence.
In the past few years, I have repeatedly done various reading-and -writing-related challenges, but they all have one thing in common: they are all related to the written word.
I have participated in the Dewey's Readathon five times, NanowriMo once, and Camp NaNoWriMo twice, and am 48 hours away from participating in my second NaNoWriMo. Of course, I am participating in the 30 day blogging challenge too!
I used to be scared of challenges, but as the years went by, I found people who believed in my abilities, and that in turn made me believe in myself more. Sometimes people still get it wrong, and think I am still that mousy, scared little girl who was too nervous to speak up for herself, but time changes people, and in my case I think it has definitely changed me for the better. There are still situations where I get nervous, just like there are for everyone, but I have more drive to give every challenge I face in life my best shot.
A Final Word.............
Well, we've come to the final blog post for me in my thirty-day blog challenge, and I cannot express how enjoyable it was, and how much it has helped me improve, not just my blog, but also my confidence when blogging. I did not know it existed until I did a Facebook search for personal blogs. Before I started the challenge I thought that writing a blog post everyday day would be hard work, but, as I progressed through the challenge, I've realised that it was not as hard as I thought it was going to be. I struggled at some points in thinking about what to write about and also in thinking up blog entry titles that would make people WANT to read my posts, but I just asked around in the group, and people were really helpful. This is another great thing about this group: people are so helpful , friendly and approachable.
I had no doubt, that after writing three novels, I would be able to complete this challenge . I will be doing it again (and I would always in a heartbeat) .
I have met so many great people this month, and thank you very much to Sarah and Kevin for doing a great job in organising this event. I will definitely be spreading the word about other people joining you in this great challenge. I am sad that it has gone so quickly, but I will never forget this amazing experience I have lots of blogs, and there is no doubt that I will be doing this again in the future at some point so that I can improve those blogs as well. I am so pleased at the increase in traffic to my blog, and also my increase in followers. Most important for me is other people's belief in me, which just makes me feel I can conquer the world, and that the people who criticised my blogs before I did this challenge were so completely WRONG! I have my writing style, and I will never stop blogging Thank you so much Sarah Kevin and everyone else! you are all amazing people.
I can't WAIT to see what chllenges lie ahead for me in my life, and plan to taxkle each and every one head-on!
Stay in touch with me:
Tuesday, 28 October 2014
I started my blog in 2012 as I wanted to show the world my life somewhere other than on Facebook. I wanted to spread awareness about my disabilities through my life experiences , and opinions on life in general .
Here is a rundown of my most popular posts!
1) Blogging Against Disablism Day 118 views
2) Birthday Blog Entry 88 views
3) A Hidden Disability is Just as Important as A Visual One! 67 views
4) Dewey's Readathon Day 2 (28 April 2013) 63 views
5) The Value of Friendship
6) How I Created my Facebook Page, Katherine Hayward my Life with Cerebral Palsy 56 views
7) 3E Loves Wheechair Heart Essay Contest 2014 51 views
8) 30 Day Blogging Challenge Day 1: How to Ignite your Passion for Blogging http://katherinehaywardmylifewithcp.blogspot.com.es/2014/10/30-day-blogging-challenge-day-10-how.html and Poem for Blogging Against Disablism Day 2013 45 views
9) How I got my Passion for Horses 44 views. http://katherinehaywardmylifewithcp.blogspot.com.es/2014/10/30-day-blogging-challenge-day-10-how.html
10) Welcome to Blog! http://katherinehaywardmylifewithcp.blogspot.com.es/2012/11/welcome-to-my-blog.html
Monday, 27 October 2014
I have always liked travelling, and also knew that I liked geography from my studies at school. I decided to study it at university. I have a geography degree. Most people hate the subject, but what I really like about it is that it is a very diverse subject with lots of different areas to it. It is not just looking at places on a map. You can learn about how different people in different countries live , and also about their customs, and way of life. When I was at university, I also learnt about the differences in society, and what people see as different. I really liked this subject, as I went through a lot of years feeling different because of my disabilities. I can remember my lecturer was very good at her classes and very patient . I also really liked tourism in the third world, and studying poverty. These are important subjects to be interested in, as the world is such a dynamic place. In terms of physical geography, I really enjoyed learning about the formation of volcanoes, the ice ages, and the rainforests. Even now, I enjoy watching programmes about these kinds of things on TV.
Sunday, 26 October 2014
My family has always had a cat. My parents had a cat even before I was born. I know her name was Suki, and that she was a Tabbie cat, but apart from that I don't know anything else about her. I was really young when they had her so I don't have any memories of her. She lived with them in Hampton Hill in Richmond, London, and then in Framfield, Sussex, and moved with us to Wallingford , Oxfordshire, in 1986.
The house I grew up in an Wallingford was on a corner of two residential streets on a popular housing estate called Fir Tree Avenue on the outskirts of the town, and, although it was quite a quiet area,because the road was very long and straight, cars would often go faster down there then they were supposed to. Unfortunately, one day, Suki was outdoors, and she got run over by a car.
Shortly after that, my parents who wanted another cat in the house got a cat called Pippa through their friends in Sussex. Pippa was completely black with a white chest and white paws.
I can remember she was the type of cat who did not sit on people's laps, but was not antisocial. She was always very popular with visitors. She lived from 1986 until I was 18 years old in the year 2000. One day, I can remember that we could not find her and we looked all over the house and garden, and she was not there. She used to like sitting underneath my mum's car when the weather was hot, and one day my mum found her asleep. We thought she was asleep at first, but it turned out that she had died. I can remember saying goodbye to her and we were all really upset because she was the first cat my sister and I had really known in our childhood.My parents buried her in the back garden.
Some months after that, we went as a family to a pet home in Wantage , Oxfordshire , my sister and I were really excited as mum and dad had told us that they wanted to get another cat. The pet home was run by a lady who adopted pets that nobody wanted. We went to have a look at the cats that were there, and I can remember not liking the fact that they were in cages as it has always seemed quite cruel to me that animals are kept like this. I can remember not knowing on which one to choose, but it was my sister who suddenly said
' look how about the grey one?'
We saw a grey kitten with a tail with lines on it like a raccoon's tale, and decided that the cat was such an unusual dark grey colour, and with that tail , it had a very unique and unusual appearance. It turned out that the cat was named Tala, and we all stroked her while the owner of the pet home cuddled her against her chest. As we watched, Tala began pawing at the lady's fleece jacket: we didn't know this at the time, but this would become a habit of hers, she loves anything soft, and I have paw marks on many a fleece and dressing gown!
We were told that before we could take her home, the pet home workers had to come over to the house and see whether it would be okay for her. We had to agree to some conditions to keep her: that she was not allowed to have kittens, and also that we would not allow her to go out of the garden and onto the paths and roads surrounding the house for at least a month. She had to have a microchip inserted so we could find her if she got lost. So, for the first couple of weeks, we had her in the house only, and she was really pleased when she could finally get out of the house and explore her new surroundings! I had to go off back to to university, and I remember coming home one autumn evening in 2002 to find Tala hiding underneath a wooden rocking chair that my parents had bought for the lounge, and also doing things like hiding behind the washing machine, and hiding in drawers. She was really not used to people, and we were told by the lady at the pat home before she came to us, she was living in a house where an elderly lady had quite a few cats and kittens, and so she would keep some of her cats in the garage so that they wouldn't make so much noise. Tala was one of those kittens.
After some weeks, she got used to being in a new home, but there are some things that have not changed about how she acts even now, and we think that it is left over from when she was living with the old lady. For example, when people come around to the house, she gets quite nervous, and is not sociable and takes herself off to sleep or take herself outside. However, when it is just my parents, my sister and I, she is fine. Tala has a great personality, and always wants to be the centre of attention. She always sits on people's laps, and has been known to sit on my lap while I am in my wheelchair, and she really does not mind me moving around when she is sitting there, so she gets a free ride as well!
A recent photo of Tala
Both Tala and Pippa would keep me company when I was ill in bed. also sat on top of my books when I was trying to study for my final exams at university. (If you have read my blog post called 11 Years Without You, you will know that I came home from university in my final year to live at my parent's house after my grandfather's death in 2003 ) or when I was just trying to read. She did this with my dad and sister as well. Two of the other things she loves, are pens (we really don't know why this is) and chicken. When she sees a pen, she will jump up to where you are if you are sitting at a table and try, and nearly always succeed, in knocking it out of your hand and watching it fall to the floor. I say she loves chicken as whenever my mum used to cook roast chicken when I was living at home , Tala always used to sit and wait as patiently as she could, which was usually not very patiently, and she would visibly shift from one paw to the other until the end of the meal, when she just knew that mum would give her the leftovers. I am told she still does this. I have not seen Tala for a while, as my parents have since moved, but I do see her on FaceTime time every time I call them.
Saturday, 25 October 2014
I was born with hydrocephalus, a condition where the cerebrospinal fluid protecting the brain and spine builds up and causes swelling to the brain and skull. To drain the liquid, I have a shunt, which is a pressure valve in my brain attached to a tune which drains the CSF all the way from my brain to my abdomen. I cannot regulate these levels on my own, so that is why I need help from the shunt. The shunt works well most of the time,
I chose to spread Hydrocephalus and spina bifida awareness awareness not only because I have the conditions as well as cerebral palsy, but because there are a lot of things that people do not realise about it. Just because it is invisible does not mean it is not there. My Hydrocephalus is very much still there, and I dread to think what my life would be like without my shunt. As you read this, please spare some time to think about people with Hydrocephalus and spina bifida today.
But sometimes it can become blocked or damaged. When this happens, I have to be operated on within four hours of the symptoms starting. My symptoms in the past were sickness, headaches, dizziness and feeling really sleepy. I'm quite lucky because I had five operations on my shunt . This might seem strange to you that I say this, but some people have had a lot more operations than I have, and at least I had my operations when I was younger whereas I do know some people who have had to have operations as teenagers or adults
My hydrocephalus is not cured , and never will be. I will never be able to live without a shunt . I feel really lucky that on this day I was born in, and live in a country where shunts are easily available. Some people do not get to have their shunt operation, as they die before it will happen, because the country they live in does not have the money to pay for a shunt operation, or they have to import it from another country. I can remember that Alfredo told me that back in Peru, he practically saw a little girl dying because she did not get her shunt not in time.
The spina bifida I have is spina bifida occulta, which means that some of the vertebrae in my soine did not form properly. http://www.shinecharity.org.uk/spinabifida/information-publications/spina-bifida-occulta
The spina bifida I have is spina bifida occulta, which means that some of the vertebrae in my soine did not form properly. http://www.shinecharity.org.uk/spinabifida/information-publications/spina-bifida-occulta
For more information on both conditions, visit http://www.shinecharity.org.uk
YRecently, I downloaded iOS 8.1 as I wanted to keep my iPad up-to-date up-to-date, and when I update it, I prefer to update as soon as possible. I had to wait a while for the software to update, so I was catching up on my reading while my iPad was updating.
The first thing I noticed was that on the menu screen, there are now buttons for podcasts and also tips for helping you to use your iPad better and getting the most out of it.
New applications additions to the iPad desktop
The biggest change I notice about the new operating system for the iPad is that the browsing history is in the same large lettering as my emails and comes up right next to the favourites menu screen which means it is very easy to locate, whereas before I had to activate the history button before I could see it. To hide it, you just press the history icon (highlighted in blue below).
Large lettering used on iPad history (same size as configured for emails)
The other great advantage is that notifications and alerts are now shown in bigger lettering than before. Before this update came out, I had real trouble seeing the updates. I knew that there was an update because I had my sound on on my iPad, but I could not read the update at all. Now, the updates stay down longer and the type is bigger. This still does not make them really easy to read for me, but it is more obvious for me when I get a notification. What I notice is that the history is now in the same size type as I chose for my emails, which for me is the largest one on the iPad. That makes that much easier to see than before, as beforehand the lettering was much too small for me to be able to read my history. I refer back to my history a lot if I visit a page I do not use often , and can't remember the name of it, but sometimes I happen to remember the date and roughly what the page was about, so I look on my history, find the date and then I am able to find the page.
Another improvement I have noticed with iOS 8.1 is that the photos within my iPad are better organised, and they also organised in a section called Moments which clearly shows the photos I have taken or saved to my iPad in chronological order (by day), so if I want to share the photos that I have recently taken/saved to my iPad, then my easiest option is to look within this category, as, as I said in my last post, the action of scrolling is very difficult and painful for me because of the tightness in my muscles in my hands, fingers and arms. Is also very time-consuming too, so it is best for me to use this moments category to be able to go straight to the photo that I want.
What the photo Moments subcategory looks like
If it does not appear there , I will just go into my camera on the iPad desktop and select it from there, but using the moments option in the photos menu section is much easier even than this. The menu for inserting photos into Blogger is now colour-coded, which makes it a lot easier to see:
Colour-coded photo options menu in Dragon dictation
The moments submenu opens out to look like this- to select a photo, just touch the one you want, and then select where to insert it.
What the Moments photo submenu looks like when open
One thing that I have got used to now, but that was a bit confusing at first, was that now on the main menu, the two squares that are one behind the other like a copy sign does not actually copy what is on the webpage, but it actually minimises the webpage so that you have a menu to be able to see the, page, or pages, that you have visited. Therefore, the only way I can see to copy the web page address (for example, which is something that I do when I want to share images to Pinterest, or if I want to share a link in my blog) is to highlight the page address cut or copy and then paste it where I want it.
on the keyboard in general, and also when you in fDragon dictation, there are suggestions for words so that if you want a word, you just have to touch it and it appears on the screen.
Suggested words on the keyboard itself, even in Dragon dictation !
Keyboard with suggested words in Blogger app
Keyboard with suggested words in Dagon dictation!
I did notice that the icons on some apps (such as Paint Gallery for iPad) were smaller than before. This is not a problem for me, as I remember the order they are in on the screen. I use this app a lot to annotate pictures like I have in this and other blog posts throughout the challenge, and also to experiment with different designs and lettering when creating my novel cover ideas so I can get an idea of what the final product will look like.
Small icons in PaintGallery app after IOS 8.1 update
That is just a brief outline of the changes I have noticed, and how I use my iPad now that it has the new software, but if I think of any more things than I will add them into this blog post in the future.
If you have an iPad, I hope that you enjoy using it as much as I do, and also enjoy the new updates that come out every so often.
Friday, 24 October 2014
I am always using my iPad. I have an iPad2 , and have had it for over two years now, and going on three, but it has really changed the way I am able to access computers. The touchscreen makes it easy to use, and I love the amount of accessibility features and applications on it. I use zoom, VoiceOver and sometimes invert the colours on the screen. As I can't pinch my fingers together or drag my hand or fingers over the screen, so I use assistive touch, where I have created gestures I can do: for example, when reading an ebook, instead of using a draggimg motion to turn the page, I touch the side of the page I want to turn once.
The downside I find is that not all of the pages on the Internet are easy to use from an iPad, because not all of them react when you want to change the zoom. To solve this, I use the iPad's ReadAloud feature which literally reads the text back to me I also set the iPad to read items on the screen such as the names of icons , the time on the clock and the battery charge level
I would recommend an iPad to anybody!
Below are screen shots of some of the accessabiility settings I use .
NOTE: if VoiceOver is activated, you can't share blog posts and it can affect other settings on your iPad, for example I found I could not copy and paste a sentence or insert a photo properly, so I had to turn this feature off to be able to do these things.
Take a look at the iPad user manual for more information .
Outline buttons- the buttons and parts of menus are outlined in black, making them easier to see
Thursday, 23 October 2014
Everyone has their favourite day of the week, but I also have my favourite day of the month, and that is today! Each 23rd of the month is very special to me, as it was on this date six years and seven months ago that Luis Alfredo Pérez Soto, proposed to me, although we had been together for a couple of years before that , as we got together in March 2006, but had been living together since January that year.
Lots of people ask me why we chose this date. The answer is that my birthday is on the 22nd of December, and the exact moment I was proposed to was the early hours of the 23rd of December in 2008 . This took me by surprise. I can remember that I was half asleep when Alfredo pullled out a ring and said he wanted to be with me forever. I was overwhelmed and burst into tears, as I never thought anyone would love me so much they would want to be with me
Since that date, 23 has become my lucky number. We always celebrate on the 23rd day of every month without fail. To us, it doesn't have to be a big celebration, we are just happy to spend time together. We usually have something nice to eat, and just enjoy each other's company. Today I was presented with a gift from Alfredo which was the new wheelchair control I have needed for the past few months. I was really happy. Something else we do is to send each other E-cards every month on the 23rd. We both agree that celebrating our love for each other in this way is great for the both of us , and it is what we will do for years to come.
Wednesday, 22 October 2014
I never really watched the news when I was younger (say, in my teens) but in recent years, I have got really interested in it. I like watching programmes on medical issues, and also like news stories about medical issues. I have been following the current story about ebola, especially as it is happening to someone here in Madrid. As my partner Alfredo really likes current affairs programmes, I watch them as well. This morning, I was pleased to learn that, after various tests that came out negative,Teresa Romero was found to be free of the virus.
It it is one thing to hear about viruses, and watch films with virus – related themes , but quite another to have something as huge as this happen. It has really been a tense 15 days of watching the news and waiting to see what was going to happen. I felt sad about them having to put her dog down, and for all she was going through. I also really felt for, and feel for , her mother , all those miles away in Galicia northern Spain . The newspapers were, and are, full of news, about this, and I could hear in the doctor's voices how happy they were as they declared Teresa virus free.
The lesson that can be learnt from this is that the world needs to have better preparation in situations like this, as too many people have died from it. From today onwards, Teresa and her family, Spain, and the world, can celebrate that someone has survived and been cured of this horrible disease, as in the newspapers she confessed to a friend that there was a point she thought she was going to die. What this also brings home for me is how fragile life really is.
Another ebola story http://www.bbc.com/news/world-africa-29721853
Teresa Ronero, the nurse's assistant who has got through the ebola virus
Tuesday, 21 October 2014
For the past 2 years, I have done the Goodreads Reading Challenge, which is bought to the world of reading addicts by the website www.goodreads.com. It seemed the perfect choice for me and I was successful in it . This year is my second year, and so far I have read 83 books. Last year I managed to read 50.
For those of you who have never done it before, you don't need a set list of books to read, as you can add them on Goodreads whenever you want. Just search the book you want and press the green 'Want to Read' button below the book, as shown below:
PC website book page
This will add it to a fictional 'shelf' where it is stored ready and waiting for you to update your progress as you move through the book.
Each Goodreads reading challenge literally runs for a calendar year, and there is no pressure to read the amount of books you first decide on, as you can change that as you go along, just go to Reading Challenge and update reqding challenge, and type in the number of books you think you might read in a year.
To be successful in the Reading Challenge, all you have to do is read the number of books you decide to read within a year.
Here are some tips:
1. Save your first book of the year on the night of the 31st of december the year before so it is literally on your 'to read' shelf . That way, you can update your progress as you start reading on the 1st of January, and you will not have to spend valuable reading time deciding what to read.
2. Read at your reading speed, but do not spend longer than two or three days maximum on one book if you have saved, say 100 books or more as your target for the year, as the longer you spend on a book, the more you will fall behind in your challenge.
3. Keep an eye on the brown progress bar, which is blue on the PC website, as you progress through your challenge. This shows the number of books you have read so far, as well as the percentage (%) of the reading challenge you have done.
It also shows the number of books you are behind/ahead in your challenge, or if you are on track, so it shows the pace you are reading at. If you are behind in your challenge, you have to read more to catch up. This could mean having to read a couple of books a week.
4. Comment on other people's reading challenges once in a while, or on a book they are reading. Hopefully they will show you mutual support.
5. If you have an iPad/iPhone or other mobile device, download the mobile app, that way it is easier to keep track of your challenge on the go!
6. Set realistic reading goals so you are not disappointed or demoralised if you do not complete the challenge: there is always next year to read that bestseller you have just bought or that much-loved ebook on your Kindle!
Whether you read lots or hardly at all, I would really advise you to give the Goodreads Reading Challenge a go - you might finish more books than you think in a year!
Monday, 20 October 2014
For as long as I can remember, I have loved shopping. This goes back years to when I was small. And not very confident. For me, dressing in clothes I loved always made me feeI great, somitvwas a confidence booster, and with the years I began to feel better about myself.
I would always look forward to when my mum bought me something, whatever that was. I would especially look forward to clothes shopping. I would buy magazines just for the fashion trends inside their pages, and look at the pictures as the text was too small to read. When I was older, I would look for similar clothes in the shops and buy them. As a teenager, I would literally avidly follow the trends, but when I got to university, I would buy more classic clothes, and only buy a current trend if I really thought I'd wear it a lot. This habit has stayed with me, and I still use this criteria when buying clothes or accessories . My favourite shops are Mango, Zara Zara Home, TK Maxx and Topshop. I really like House of Fraser too, especially as they stock Urban Decay makeup, which is my current favourite brand.
Shoes are a different matter for me: because of the posture of my feet, and the fact I have relatively small feet (for years, I was a UK size 2,then a 4 . Now, I am a 41/2 or 5, depending on the style of shoes. My feet are narrow, and I find it very hard to find supportive shoes, although I am in a wheelchair, as it is no fun being uncomfortable, I love looking at shoes in shops, magazines or on websites, but there are very few styles I can wear. I love boots for the cooler weather and love sandals for the summer like everyone else, but I have to choose more carefully, and I refuse to wear trainers all the time, as everything I wear HAS to look good together.
I love anything glittery or sparkly, or clean-cut, classic shapes and colours, and small patterns, if there have to be patterns. There are some colours I do not wear a lot of (geeen , yellow and blue) and I don't wear much white as with my coordination when doing things, they easily get dirty.
I don't tend to buy clothes or shoes online, unless I have seen them in a shop first and am really sure I want them, as I have had some online orders messed up as they have sent the wrong item or size. I once bought something from a webisite in the USA which turned out to be too big, but in the end I kept it thinking it will be good to wear when I want to wear layers in the winter. Sometimes, delivery costs put me off online shopping, although there are good offers online that can't be found in shops, and more product variety. I will pay delivery costs if it is something I really want or can't get easily or elsewhere.
Every time I want to order clothes from the USA, I have to be sure to,look for size conversion charts.
Shopping has always been a way for me to destress, and I feel better afterwards, even if all I do is download a free ebook. I still love the warm fuzzy feeling I get after having bought something! Some people see it as me being materialistic, but it is not that for me. After all, if people are going to stare, why not stare at something that looks great on me rather than my glasses, or my wheelchair?
Sunday, 19 October 2014
I have just finished the october 2014 Dewey's 24 hour Read-a-Thon! This was my 5th time participating . I wanted to include my stats from my last post on my reading blog, My Reading Paradise as it is not doing the event justice enough to just say 'I had a great time.' I will participate every year.
So this is my last blog post for this Read-a-Thon, and here are my statistics:
Books read: 2
Total number of pages read: 572
Comments left on my blog: 4
Comments I left on other people's blogs: 3
New followers on my personal Facebook page: 2
New followers on my My Reading Paradise Wordpress blog:18
New followers on my My Reading Paradise Facebook page: 1
New twitter followers: 8
Thank you so much to everybody who supported and encouraged me and see you in April, when I will be doing a pre-Read-a-Thon post for the Dewey's Read-a-Thon blog!
Follow my reading blog, My Reading Paradise http://myreadingparadise.wordpress.com/
Here is the link to the My Reading Paradise Facebook page https://www.facebook.com/pages/My-reading-paradise/291319524300909?ref=ts&fref=ts
Saturday, 18 October 2014
Tomorrow marks the start of UK spina bifida and Hydrocephalus awareness week 2014. For those of you who don't know what these conditions are, they are both neurological conditions, and both present from birth. Most countries have their own national organisation for people with these disabilities, and the UK one is called Shine charity.
Here is the website.
They have helped me for years, from my diagnosis when I was two weeks old to when I had operations, and more recently, with other queries about pregnancy and ageing with Hydrocephalus. I get their magazine through the post. The magazine is called Together, and inside it, they talk about recent developments for the management of spina bifida and Hydrocephalus, real-life stories of people with one or both conditions, and also fundraising efforts. Here are some articles which explain what Hydrocephalus and spina bifida are .
When I was born, the doctors diagnosed me with spina bifida occulta,the least severe form of spina bifida. In this form, spina bifida does not cause a tumour to grow on the spine, but it does cause for example dimples on the back.
However, my Hydrocephalus is severe. When I was born, I had a severe brain bleed on both sides of my brain. The doctors measured the size of my head, and saw that it was rapidly growing as my brain was being pushed out by the increased pressure inside my skull . They diagnosed me with Hydrocephalus because of this, and my movement difficulties were diagnosed as spastic quadriplegia cerebral palsy.
Because I was so premature and so unwell, they only noticed it after I had been taken off the ventilator to help me breathe from the moment I was born.
I had surgery to have my first shunt in , but I was very unwell during the operation, and it had to be abandoned
I will tell you more about that tomorrow and during this week. I will be posting a post about Hydrocephalus and/or spina bifida throughout the week. The awareness colourful birthdays disabilities is yellow, so make sure you wear something yellow during the week, and be aware for people with Hydrocephalus and spina bifida, especially on the 25th!
Thursday, 16 October 2014
Dewey's Readathon is almost here!
I love reading, and I also love competitions. I did the Dewey's reader in the last few years, and I really enjoyed it. For those of you who have never heard of it, is a competition where you have to read as much as you can in 24 hours, and blog about what you read and your progress. You can also follow other peoples blogs to see how they are doing. I did quite well in previous years, and luckily reading is enjoyable for me. Here is my reading list:
Keep reading and finish Shopaholic to The Stars by Sophie Kinsella
Wild Hearts book number five Passionate Kisses
Wild Hearts book number six Hot Winter Knights
I will also be reading some graphic novels.
Snow White 3D
Beauty and the Beast 3D.
I have some tips for people who want to do Dewey's Readathon, whether it is your first time or your third (or more! )
Keep an eye out for the sign up links on the facebook page
Sign up as soon as you can, with a link to where you'll be posting your progress, whether it is a blog or a website.
Follow other people's blogs before the competition begins.
Decide what you want to read
Make a timetable with reading time and meal and rest breaks
Always read at a normal pace for you: don't rush.
Visit the blogs you follow and comment on people's progress.
Blog your own progress at regular intervals, for example every hour of two.
Write a summary post including:
Number of books on your reading list
The number you read during the event
How well you think you did
Whether you are happy with your progress or not
What you would do differently next year (would you sign up earlier/ follow more blogs/read more or less books/ read a different genre (type) of book?
Make sure you rest!
You can follow my progress on my blog www.myreadingparadise.wordpress.com
Have a great readathon!
Wednesday, 15 October 2014
My sister Nicky was born on 16 January 1984.
Growing up we were very close, and still are .
She had to grow up quickly because of my needs. She is a very good person to talk to. She is very supportive, and in the past defended me against the bullies at school. It does not matter to her that I have the disabilities that I do, she just sees me for me she is very supportive about my novels, and everything I have achieved in my life so far. She always included me when other people, (including my own friends or parents) did not, and still does. I'm really glad I have a sister like her. When my sister Natalie died, it must have been very hard for my parents. I am glad that they thought about having another child. I think I would have been quite lonely growing up otherwise. Nicky and I both like shopping, and we always find something to talk about when we see each other. Now, she lives in Yatton in Somerset with her husband, she plays in a band and got married over a year ago. but we always try to stay in touch somehow, weather we are sending text messages to each other or sometimes we are on Facebook messenger.
Today is a sad day for me and my family. It is now 11 years to the day since my grandfather, Terrence Barton Kelly, passed away. I can remember that day well. It was 2003, and I was at Reading University, two weeks into my final year. This was the most crucial year of my geography degree, and I was in my bedroom when the phone rang. My flatmate Annabel King passed the phone to me. I answered it and it was my Gran. She sounded different. The usually bubbly lady was subdued , and I knew she had a right to be. The next sentences took my breath away: she said that my grandfather was in hospital, and that he was extremely ill.I asked what has happened to him, and she said that he had had a stroke. He hadn't been well for years at that point, as years before this, he fell down the stairs and was diagnosed with peripheral neuropathy which affected his balance and walking.
My grandfather was a trained architect, and had worked in London for years. I really enjoyed talking to him about anything, he was very open and honest, and also had a great sense of humour. He was really proud of each and every one of us in the family and never singled me out because of my disabilities. He treated me like one of the rest .
Despite his health issues, he carried on with life as best as he could. I will always remember him criticising Big Brother, or sitting out on the garden bench listening to his books on tape. He also had glaucoma. As soon as I finish talking to my Gran , I was in tears , and my flatmates came to comfort me. I then rang my mum.
I went back and forwards on the train or bus between Wallingford and Reading for a couple of weeks before I quickly decided that, as much as I wanted to, I could not stay in the house I shared with my friends, as I could not concentrate on my work. I decided to finish my final year of study living at my parents' house in Wallingford.
I still went into the University everyday and used the university library when I needed to, but I did not see my flatmates again until graduation the following summer in July. My carers and the people who helped me in my lectures were very understanding and said I did not have to go to the lectures, and they would go on my behalf, but I went to my lectures, took my exams and finished my degree on time. All this time, I told myself that there was no way that my grandfather would like to see me abandon University, (but doing this did cross my mind). Even so, I continued with my degree when I felt my worst. My grandad's funeral was the first I had ever been to in my life and it was packed with people my grandparents knew, but I didn't know many people.
I will never forget you, Pa.
Tuesday, 14 October 2014
Alfredo and I have been together for 8 1/2 years now. We first saw each other in 2006. I was looking for an apartment and he was already renting out one of the rooms there. I ended up taking a room there , and we also shared with another lady. We were living together for six months until we decided to move out of there. By this time, I had realised I wanted to be more than friends with him, as I liked his kindness. Then we moved into an apartment just the two of us. He proposed to me on 22 December 2008. This was the night of my 26th birthday. For a long time, before this, I did not have very much confidence in myself, and was certain that I would never have a relationship and that nobody would like me. I had some disastrous dates in secondary school and when I was at university. Guys would just walk away. That's why I'm so glad I met Alfredo. He is not only good-looking, but really understanding, and also accepts me for who I am . Our hopes for the not-too-distant future are to get married and to have a family. I could not ask for anyone better to be with.
Monday, 13 October 2014
Finding a new place to live can be really easy,or really hard. Unfortunately for me and Alfredo, it is the latter, but we keep looking .
Here are some pointers to help you on the way to finding your new home:
Register for as many online property sites as you can, and registering with sites that post properties that are specifically accessible or adapted for people with disabilities will help as well. We registered on both kinds of sites.
Check them every day, even twice a week. Choose the frequency you think is best.
Look on online newspaper websites.
Create alerts on the property website type of housing and location, as well is the number of bedrooms you would like. The site will send you emails with properties that might suit you.
If you see a property that you would like, but that there aren't very many details in the description, email or phone the agent straightaway asking for more details. We have done, and they have made a note of my details, and told me they would get back to me if they find a property that matches my search criteria.
Ask around – ask friends that you know moved years ago, or more recently, or who are in the process of moving. Ask them what their experience of moving was , and ask them what they had to do to find their house.
I did this, and some people were willing to tell me, while others were not so much, but I do realise that this is quite a personal thing to ask about. I am glad I did ask, as I have a better idea of what it really is like to be looking for a place.
Think of the kind of place you really want to live in for YOU, and do not be influenced to much by what other people say about a particular area they do not like if you like that area, and if living there would be convenient for you for some reason or if you just want to live there because you like the area or it is near family or friends.
Make a list of what the housing absolutely HAS to have, and what is not so essential for you.
Keep a note of the searches that you have done so that you can remember where you have look, and what the search results were .
Every once in a while , do a general Google search for housing sites: you might come up with housing sites that you haven't visited before. This will broaden your search.
Finally, have hope. I know from experience how frustrating and demoralising it is trying to find a place to live (believe me, we have been looking long enough! ) and to have people tell you that you shouldn't worry because one day something will come up. More than once , I have thought when will this end? When will we have that kind of stability where we are in a place we love living in? The answer to this is, I don't know, but, if I give the search up, we will never know. I am not the kind of person to give up easily. Neither is Alfredo. This is one of the reasons we are a great team.
Sunday, 12 October 2014
30 Day Blogging Challenge Day 13: How To Lose Weight If You Use AWheelchair Or Have Mobility Difficulties
Autumn. It's a time of leaves falling off the trees, the weather getting colder, and everyone starting to think about Halloween, and Christmas. This autumn , I decided to start a diet to try and lose weight before my birthday (22nd december) and I want to wear a nice outfit, and just be a healtier weight.
Throughout my life, my weight has yo-yoed a lot: I weighed 2 lbs 6 oz when I was born , and over the summer this year, I realised I was at my heaviest weight. The day I realised was the 12th of August. I have always tried to eat as healthily as I could, but have always had a sweet tooth and I was a real chocoholic from when I was younger up until about four years ago. What stopped me eating chocolate? I went to my GP and he sent me for a blood test because I have always had heavy painful periods. That test confirmed two things: one, that I was anaemic, and two, what worried him more : that my triglyceride levels were up. To help bring them down again he gave me some tablets, and fortunately they worked. In fact, I practically stopped eating chocolate and sweet things after I went to see him about this. He advised me not to eat chocolate because of the fat and sugar it has it. I know people say that you can eat everything as long as you eat in moderation, but now I find that I don't have the desire to eat chocolate, or sweet things, so we do not have them in the house. More recently, I have reduced my salt intake, as Alfredo saw my feet get swollen in the summer . I really like food like pretzels, marshmallows and any type of chocolate, but I stopped eating those altogether. That itself seems to have made some difference, and also the fact that I don't have any sugar in my decaffeinated cappuccino when I drink it. I only drink drinks like Coke very rarely, and if I do buy them I drink the diet or 'zero sugar' variety. I have also talked to a nutritionist who gave me more advice about looking after my diet and body.
My partner Alfredo does my exercises on me. They are stretches and also I use an exercise elastic. I am unable to use or lift any type of weights as they are all too heavy for me, but the exercise regime I have has given me some results, and quicker than I thought, as since 12 August, I have lost 3 kg and 300g which is over half a stone.
I drink a lot of water, do not drink caffeine (doctor and neurologist's orders , as I get headaches anyway, and caffeine worsens these.). I do not drink alcohol. I don't smoke either, and never have done.. My advice to those of you wanting to do more exercise despite disability or illness is:
Before you start:
Look at a body mass indicator website, to see whether your current weight is within the normal range of not. If it is not for example if you are underweight overweight can you must do something about it if you want to be back within the range of your normal weight. After you have done this , I would suggest that you work out how much weight you need to lose to be near or at, your ideal weight. I did both of these things.
The next thing is to have somewhere you can write down, or record your weight and your progress. You could use a notebook, or your iPad, or whatever you find easiest .
If you have an iPad, I would really recommend having I like to see what calorie counter apps you can find. . There are plenty of calorie counter apps out at the moment. I downloaded one called My Fitness Pal. It is in the AppStore.
My Fitness Pal For iPad
I really like this app, as it has a huge database of foods drinks and snacks, so that you are incredibly likely to be able to select what you have eaten. It also has a barcode scanner, and can chart your progress while you lose weight. I use this app everyday now and it is a fun and easy way to keep track of what you eat and how much exercise you do.
These are my steps I suggest you follow whilst you are on a diet.
Choose a sport or activity that you enjoy.
Fibre is a great help: choose wholemeal bread, rice, pasta and cereals.
Choose foods that fill you up, but in a good way. So, instead of eating your favourite steak, eat lentils. They have the same amount of protein as a steak and are much healthier. Alfredo and I eat lentils in a tomato and herb sauce (he makes the sauce) and accompany it with a salad.
Drink more water. It doesn't have to be glasses of water, but can also be herbal teas and soups, but plain water is best.
Stay away from fried foods as much as possible, and even better, avoid them. The only fried food I eat is fried fish now and then, but not very often at all.
Eat more vegetables and salad. Raw vegetables such as carrot and cucumber are great for diets, and healthy eating in general. I eat spinach or lettuce leaves as well. If you like salad like me, have salad.
Identify the foods you love, and stop eating them so frequently or better still, taken out of your diet completely.
Next time you are in the supermarket, avoid buying the foods that you really like. They aren't in the house, then you won't have the urge to eat them and, if you are really serious about your diet, and wanting to lose weight, you will soon forget about those kinds of foods – trust me, this works!
Follow these steps and decide on your own way to lose weight, and I am sure you will be successful over time.
If you need advice, ask your doctor or therapist.
Saturday, 11 October 2014
Following on from yesterday's blog post, today I am going to show you how Dragon dictation works. I have both the PC version and the iPad app. Let's start with the iPad App. I have the Spanish version.
First you press the button below 'Touch and Dictate' on the iPad
and the voice recorder starts moving up and down like in the picture below , recording your voice.
Touch the screen to stop the recording. On the PC version you just start and stop talking to start and stop the recording. This example you see is for the purpose of this blog post:
Down the left-hand side, you can see notes. Notes in Dragon Dictation are dictations that you have done.
In the top right-hand corner, there is an arrow with a line below it. If you touch this you can send your dictation as an email, copy it, paste it send it to Facebook and twitter or change the settings such as the language. I use this button quite a lot, as I change between English and Spanish when I am dictating. Next to it, there is a wastebin symbol you can press to delete your work. You can either delete what you have just dictated, or delete another note that you have done.
The + is what you have to press on the iPad to start a new dictation. The iPad at is not as advanced as the PC software, but I really like it. The downside with Dragon is that it doesn't recognise you straightaway, you have to practice with it. I found that the iPad recognised me more quickly than the PC version. It is best to speak at a normal speed, without pausing if you can, so there is a natural flow of words. If you pause between words or speak too slowly, Dragon dictation will stop recording. On the iPad this is more visually noticeable, as the recording screen will disappear and you'll see what you dictated so far. On the PC, words will appear saying please repeat, until the software recognises what you are saying.
On the PC version, you can add words to the Vocabulary Editor, and you can train the computer to recognise your voice by repeating words and you can also type in your own words and commands. If you make a mistake, you can say 'delete it/ delete that/ scratch that' (the commands to use for different tasks are in the toolbar on the PC version. You can delete words on the iPad app simply by touching the word you don't want. When you do, some alternatives to replace it with will come up, as well as a delete button. Either choose an alternative word or delete the word altogether and then say the word or sentence you want to appear in it's place. You can delete an entire sentence or paragraph on the PC by selecting the sentence by saying 'select/ highlight from....to.......' , or 'delete x number of lines' . When you want to do the same on the iPad, just touch all the words you want to delete until they disappear.
Using Dragon With Programs Other Than MS Word
Dragon for PC
As We saw at the beginning of this blog post, once you install Dragon Dictation on your PC, you can load it just by clicking its icon on your desktop. There is no right or wrong order to load Dragon Dictation terms of whether you choose to load the programme you want to work in or Dragon Dictation first. However, I prefer to always load Dragon first, so. Can be sure it has properly loaded and opened before I open the programme I want to work in with it.
Dragon Home Edition (PC) opening screen
So, for example, if I want to work on a project in Word, as I did so many times with my projects at school and university, or as I do now with my novels, I select the Dragon icon, wait for it to load, choose the profile I want to work in, and the Dragon toolbar will come up along the top of the page in the programme where you are working. The PC version has the option to either have the bar fixed and unmoving (what it calls 'docked' ) or floating, so you can move it from one place to another. I prefer to have it docked at the top of the page and still, as it is less distracting for me because of my eyesight. I am then free to just concentrate on dictating.
OK, so once you have Dragon open, the next step is to turn the microphone on.
What Microphone to Use
The microphone on the iPad is your iPad's microphone, and you turn it on or off by pressing the round button in the centre of the dictation screen.
For PC use, you can use a microphone headset. This comes with the software when you first buy it, and can be replaced in the Nuance store or over the internet. The Nuance website revommends ones that are compatible with speech recognition programmes and especially Dragon Dictation,
I recently replaced ths headset foam on mine as it was too worn to use. I'd recommend this idea if the microphone part of the headset is working well, and if the only problem is worn foam. And also if you don't want to or cannot afford to completely replace your headset.
You can also use a desktop microphone. Again, check with Nuance to see which is suitable.
Back to Using Dragon.......
There is a small, red square icon on the Dragon toolbar, and also in the bottom right corner of your computer screen . Click on either of those , or say ' listen to me' 'turn microphone on' or 'wake up' . When Dragon is 'on ' or 'listening' , the icon will turn into a white 'i ' surrounded by a green circle . You can begin dictating when the progress bar says 'ready to dictate' . You can can literally tell it what programmes you want to open . For example 'open Paint' 'open email' 'open Google', and it will do that.
Controlling the Mouse
If like me, you find it hard to control the mouse, you can get Dragon to do it by saying 'move mouse left/right/up/down X number of words / sentences. There is also a mouse grid (see the 'commands' on the Dragon Bar to learn the commands for how to do this . I don't use the grid, as I am unable to judge where to place it, so I use basic mouse commands.
The Dragon Bar (PC version)
This is a detailed toolbar for use with Dragon Dictation. You can have it visible all the time, or you can hide it by pressing the minimise button. I prefer to have ot visible, as it gives you the commands to use for different tasks.
You can print with the PC version of Dragon, just move the mouse to the print button on the menu (in Word, for example) and say 'double click' to open the print window, select the copies you want to print and the print button in the same way.
There's not a way to print directly from the iPad app unfortunately.
There is not a Dragon Bar for the iPad, but there is a menu on the top right-hand side of the screen . Touch the blue gear icon and you'll be able to post what you dictate to Facebook or Twitter (as long as you link them with Dragon first) . Do this by clicking on the gear then social networks and enter your details for twitter and/ or Facebook. You can activate one or both. You can select the language you want to dictate in by touching the name of the language. In the list.
You can decide if you want names of people to be recognised in your dictations, and also if you want Dargon to stop recording you as soon as you stop talking. Personally, I keep these options activated as I send a lot of emails, and like Dragon to recognise the names of the characters in my novels, although it does anyway after awhile, if you use it enough, but I actuvate this feature to be sure.
To save your work on a PC, you have to save your file as usual (if you use Word) and then you have to save your profile. Wait until the black progress bar on the small Dragon toolbar at the top of the screen is full, and then close the software.
NOTE: THIS PROCESS MUST BE DONE PROPERLY IF YOU WANT DRAGON TO SAVE YOUR DICTATION AND REMEMBER YOUR VOICE BETTER. You can change profiles, open a new one, and work on different ones.
I have attempted to demonstrate the basic functions of the Dragon Dictation app for both iPad and PC. To round off this blog post, there's not much more to say, other than, if you want a good, accurate dictation, then use Drafon dictation regularly, and above all, have fun when you do!
There are lots more versions of Dragon. There is a version for Mac, and the iPhone as well as one for business and also one for health professionals. They are all available on www.nuance.com (you can choose your country's website by clicking on the flags at the top of the page) and all good online retailers like Amazon. If you look well, you'll find a good deal on the internet.
If you need help, there's also a forum whivh you need to sign up to use, but which I can tell you from personal experience, is very helpful.
Updating Dragon Dictation.
For the PC version, you can download updates (you'll be notified when ypdates are available). For example, I bought the Home Edition for PC version 11, and have gradually updated it until it has reached the 11. 5 version.
Niance has all the current versions of Dragon dictation. New versions are launched regularly, so it is a good idea to keep upto date with news from the website, i visit the website whenever I can. To update the iPad version, Just visit the AppStore and chack the updates sextion for your iPad- if your version of Dragon Dictation, whichever one you have, is up-to-date, it will work quicker, faster and more accurately, saving time and letting you enjoy the important moments in your life.
I love Dragon Dictation. It means typing is enjoyable rather than slow, difficult and painful for me. In my opinion, it is a great tool for anyone, whether you have a disability or not, and can be used by people of many ages and abilities! 5 stars! In fact, I'd give it more as it is so essential to my computer use. With Dragon, I can concentrate on content which is ths important part.
10 out of 10 :)