Monday, 20 April 2015

A Proud Day

Today's a proud day for me. I've just validated my novel and won Camp NaNoWriMo for the 3rd time! this is my 5th NaNoWriMo win overall since November 2013. Now I'll be editing my novel and submitting it to Inked Voices for critique.I'm looking forward to a good rest now, and checking out the winner's goodies :) 
Camp NaNoWriMo this time has been fun as always, and I'm looking forward to participating again in the future. 



Sunday, 19 April 2015

A big achievement in my blogging life.



A couple of months ago, I started drafting my pre readathon post for this month's event, which begins next Saturday (25 April). Andi, the organiser, promised me last year that I would be able to do a warm up post for them this year because I missed my slot last year. It's just been published on the website today. Here's the  direct link  for the post (click on the title of the post on the main page to get to it). There's a comment form at the bottom, so feel free to leave a comment! 
http://24hourreadathon.com/2015/04/19/happy-readathon/

and a screenshot. 


I am feeling proud of this, because, ever since I started blogging, it's the only blog entry I've had published anywhere outside of my own blogs. I've been thinking recently that I want to get my blog some more traffic somehow, and I would also love to be able to review authors' books and get a copy in exchange for an honest review. That said, I'm not really sure how I should even begin to go about that. It sounds like I have to start doing some research. If you read this, and have any ideas on how I could make this happen for myself, please leave a comment. I'd really appreciate some helpful input .




Saturday, 18 April 2015

Unconditional body beautiful: Stomach story



I have always struggled with weight gain and then weight loss, and maintaining my weight is difficult, because of my disability, so I have always put weight on around my stomach and thigh area . This has always made me feel really self conscious as well because I love buying nice clothes, and hate the thought that, when I'm out, people might be staring at my stomach area. (I don't know whether they are or not, they could be staring at me because I'm in a wheelchair or they could be staring at some other part of my body, but thankfully that is the upside of having not very good eyesight). I do tend to assume  that people are staring at my body though – I think it's probably some built in mechanism from years ago, because I've always had hangups about people staring at me.
I will never forget the day when, years ago whilst moving into a new apartment, the first thing that the landlady asked was whether I was pregnant because she told that I had put on weight since the last time she saw me. I will never live that down – the fact is that I wasn't pregnant , and had just put on some weight. I really don't like the way that society often, and wrongly, assumes that just because your stomach area is slightly larger than the rest of you that it automatically means you are pregnant. That aside, I would love to be a mother one day and Alfredo and I are planning to have a family, and see ourselves as capable despite the extra challenges my disability brings. Unfortunately, in my experience it is not only strangers that have pointed things out about my body I don't like , but it also has involved close members of my family. I can remember that when I was going through puberty, my mum kept calling me "thunder thighs ", because that was the first area of me to develop. In reality, my thighs weren't that big, but the words really hurt me, she probably didn't mean, it nastily , but I have never been able to take jokes well– and even struggle to now. I'm still quite sensitive to people's perceptions of my body.
 I spent most of my adolescent years being a UK size 10 to 12, and then dropped to about size 6 to 8 during my university years, and put weight on since then and am now a size 16 and sometimes 14, although I would love to get down to around a size 12 and then keep going until I get back to a size 10, although in reality I was happier about my body when I was a size 6 to 8.
A lot of why my stomach looks so big is my posture, because of not being able to sit straight in my wheelchair or stand straight (when someone holds me up), so this, coupled with my short height of 5 foot 2" , makes me look bigger than I actually am, although I do know that once I lose some of the weight off my stomach, I will look slimmer and that's what I want. I have lost weight since last August though, when I was 13 stone (182 pounds) , my heaviest ever, and I'm now around 11 (154 pounds). It's not a lot, I know, but it's something, and that's important to me. 
How my stomach looks is part of the fact that I don't take very many pictures of myself to put on social networks.
 My action plan is to go swimming more now that the outdoor pool will be opening again in May. Unfortunately, near where I live, there is no indoor swimming pool so I can't go to the pool in other months of the year as much as I would like to, and the swimming pools in other nearby areas are not wheelchair accessible. Although I can't move around as much as someone who doesn't have my disability, I am still fashion conscious and conscious of the need to be nearer to my ideal weight for both fashion and health reasons.
My diet is not a problem because I already eat really healthily, I just need to do some more exercise which is what I can do if someone actually does the exercises on me, or holds me in the pool and moves me about while I'm in there. Sometimes, I have realised that even now I can wear medium size clothes instead of large, but it does depend on the shop and also the closing style . This summer, I'm determined to lose some weight from my stomach, and to be more toned there.
Years ago, I borrowed one of those belts that tone your stomach area, but I'm not sure about the long-term use of something like that in my case because of the fact that I have muscle spasms because of my cerebral palsy and also because I have a valve  and draining tube inside my brain because of my hydrocephalus. The draining tube goes all the way down to my abdomen, so I'm not sure what kind of an impact using something like a toning belt for weight loss could have.

Sunday, 12 April 2015

Crossing The Finish Line: Camp NaNoWriMo April 2015


12 days since Camp NaNoWriMo began, I have crossed the finish line! This month also marks a year of my participation in Camp NaNoWriMo (my first attempt at Camp NaNoWriMo was in April 2014 and my second was in July 2014). I'll spend the next few weeks editing and adding to my draft. 




Sunday, 5 April 2015

Days 4 and 5 of Camp NaNoWriMo April 2015


With it being Easter weekend, I still managed to get a lot done for my novel. I also "fleshed out" some characters to make them more rounded and real, and added to my plan, as well as having an enjoyable Easter sending and receiving ecards. in between times, I'm doing a lot of reading. At the moment, I'm reading a lot of real life memoir stories by Cathy Glass. 
Here's my progress chart for the weekend: 


I'm hoping to get a lot more done this week, but like my progress so far. 







Friday, 3 April 2015

My progress on days 2 and 3 of Camp NaNoWriMo April 2015

Between today and yesterday, I've done another 4,000 words, taking my total up to 9,000 words. i'm very pleased with my progress this time, and with my choice of story and genre. I'm hoping to Get well up past 10,000 words this weekend. I hope You have a great Easter weekend! I'll keep updating you on my progress theoughout  Camp NaNoWriMo. Yesterday, there was a virtual write in and it was published on YouTube.



There'll  be more, and I'll post them here as well as on my From First Draft to publication blog (my writing blog) which is also here on blogger.



Wednesday, 1 April 2015

It's Camp NaNoWriMo time again

It's Camp NaNoWriMo time again


Today is the start of April, and that means it's also the start of  Camp NaNoWriMo. I've participated  before, and won all thise times. Today was an amazing day, I got 5,000 words done! I'm looking forward to day 2. I've decided to change genre this time, and write women's fiction.I think this is a  good decision so far, as I can write about things that happen to people day in day out, and don't have to write for such a young audience as I did with my fantasy trilogy (which, by the way, I'm still working on. What's helping too is the fact I have a good novel plan to help keep me on track. I'm already noticing my writng is sounding better than when I wrote my first book during NaNoWriMo in November 2013. The book I'm working on now is my fifth book. 

Thursday, 26 March 2015

Happy cerebral palsy awareness day



Today, 25 March 2015, in cerebral palsy on Wednesday. I have been spreading cerebral palsy awareness since 2012 through my Facebook page, Katherine Hayward my life with cerebral palsy. In that time, I have got 677 page funds. I'd like to thank each and everyone of you. In minor page and looking at what I post on there and also sharing my page around so that we can gain more awareness of cerebral palsy together. My awareness page is not just a page for cerebral palsy awareness, it's also a page where I spread awareness about hydrocephalus, my other disability , and also about eyesight difficulties related to the two (which I have as well ). In addition to this, I spread awareness about other illnesses and conditions as well at other disabilities , and love to be contacted by people with any kind of disability or illness so that I can spread the word about their experiences too. I will, of course, share your disability awareness pages and stories if you would like me to. All you need to do is just send me a private message to my page.
Here are some photos  and a video to show my highlights  from today:






Saturday, 14 March 2015

My Legs



I'm writing this post for the Unconditional Body Beautiful page, but also to raise awareness in general, and so I'll also post it on my disability awareness page, Katherine Hayward my life with Cerebral Palsy on Facebook. 
Enjoy! 

I've always been self conscious in a lot of ways about my legs – I suppose its because the cerebral palsy I was born with affects  them as well as my arms. When I was 3 years old, I was assessed and was given some ankle foot orthoses , or AFOs. These are white plastic leg splints with a velcro fastening that keep your legs in a position so that your muscles are stretched. The ones I have were like these. 

 


 I can remember that every so often, an occupational therapist would come to my childhood home with a pair of gaitors which are a different type of splints, and have more velcro  straps then AFOs. They were very similar to these 



I really didn't like any of these, because they had to be on quite tight to give my legs a beneficial stretch, and it was uncomfortable for me . When I wore the splints, I also had to wear horrible heavy orthopaedic boots, like these (called Piedro boots) 


and which I didn't have the dexterity to lace up. They were the only type of shoes that my splints would fit into. I can remember wishing, even at a young age, that they were more fashionable!
I even wore them for horseriding for years  until I saw a pair of ankle-length riding boots that were a lot more fashionable and more supportive for me. 

Footwear has always been a passion of mine, but because of the posture of my feet and legs, it has always been really hard for me to find supportive shoes that are fashionable as well. I don't just want to wear trainers all the time, but with a lot of looking around I have unfortunately been able to find lots of nice shoes. Another thing that I have always been self-conscious about is the posture of my legs. I have a pelvis that isn't straight , and also hips that are partially dislocated, so that the end result is that my legs and feet turn in wherever I am, like this. 


Over the years, it was seen that all the splints did nothing for my leg/hip/pelvis posture, and so I just was told not to wear them anymore. On one hand, I was happy about this, but on the other hand, it meant that because I didn't have the splints on anymore, the way that my legs turn inwards has been, and still is, a constant source of pain and discomfort for me because of the stiffness in them .

On my wheelchair, because of the posture of my legs and the fact that my legs are so stiff all the time, they won't stay where they're supposed to, I have wedges inside my wheelchair cushion to help my legs stay apart when I'm sitting, because they tend to stay together otherwise and also flop to the sides of my leg rest. 

My Wheelchair Cushion (Jay 3 by Sunrise Medical) 


When I get my new wheelchair , I'm hoping to get an electric leg rest which elevates so that I can change the posture of my legs. I can't at the moment, and this also seems to be causing more stiffness and pain. I have really bad circulation in my legs which is another effect of my disability, and they are always cold. In the summer, my legs swell a bit, which is also uncomfortable, but it's a different type of pain to my normal stiffness. When they swell , the skin on my legs feel tight and uncomfortable, but my normal stiffness affects  my muscles. When I choose trousers, I either choose jeans in a shade of blue that I like, or another colour I mostly wear trousers, although I like skirts, but so far I have not found very many skirts that I like or that are the right length for being sat in a wheelchair. I hope I do very soon, because just because I'm in a wheelchair doesn't mean that I don't have to be fashionable! Fashion is something that I love.


Wednesday, 18 February 2015

My Chest Issues Over The Years

As this blog post is the Unconditional Body Beautiful post about chest issues, it's another one that's going to have me writing a lot. Throughout much of my life, I was pretty flat-chested due to my shunt operations having been on some parts of my chest, and therefore the area not developing and growing for years. I was really self-conscious about this, and hoped that one day my chest would fill out. As luck would have it, it has done. I was very self-conscious wearing bikini tops or any kind of clothing that showed my scars.

  I always found nice bras, but because some of my scars are right in the parts of my chest where the underwires of a bra would go, I have never been able to wear underwired bras because they dig into my chest and are incredibly painful for me to wear. I know many women don't find underwired bras comfy. So, I wear nonwired bras which are harder to find but worth it because they are comfortable for me. Over the years, the only shops I have found which sell non-wired bras  are 1) Marks and Spencer. Even then they are fairly expensive, at £16 upwards for a single bra,  and £22 for a 2 pack of bras. However, they are worth every penny because they last me years. 

Here are some I like from their current collection:


Debenhams is a shop I like for some things, but I never would hq e thought of going there. Here are some of their non-wired bras: 


Last but not least, there are just a few in House of Fraser, and they are these: 


More details can be found on the website for each depertment store. I have left out TK Maxx, Topshop and La Senza. I love La Senza for PJs, but they don't stock any non-wired bras, although their bras are gorgeous. I found the same with TK Maxx and Topshop. I'm a total shopaholic, so I really don't mind shopping around for things! You can see my shopping blog at www.disabledshopaholic.blogspot.com.es. 

Now, back to  my chest issues story. 

I can still remember how shocked I was, when, when I was 11 years old, a doctor asked me if I wanted plastic surgery on my chest scars and other scars. I told him I didn't because the scars were a part of me.  I think he was surprised to hear that from me, but I think it's true.Each and every woman has a different chest size, and should be happy with what she has. I know I am! I turned the operation down because by then I had had lots of operations on my shunt which involved my skull, chest and abdomen being opened, and I wasn't in the mood for any more. 

For me, another side to the chest issues I have had in my life started when I was born 3 months prematurely. I had a build up of air between my chest and my lungs and my lungs kept collapsing. I have had tests and I have a lower lung capacity than other people because of the lack of oxygen I had at birth. I have always found it hard to keep colds away, and can have them for weeks (I am trying to get rid of one as we speak). 

Whether I have one or not, things like lying on my side in bed has always made me cough, and I have been told about the importance of posture, so I have a viscoelastic pillow which I love.  
I hope you enjoy this blog post, and find out more about me whilst reading it! I'd say to all those women and girls  out there who think they can't find nice bras to wear because of chest issues, there are lots, you just have to look aroud the high street! I have always been self-conscious about being measured up for bras, but it feels great when I have the right one. I have always been very trend and fashion-conscious, too, so , for me, how I look afterwards outweighs all the feelings of embarrasment I go through when a stranger sees my chest and scars. 
In writing this blog post, as with all the others on this, and my other blogs, I hope my readers will find something positive to take away with them. if you are a girl or woman who has had the same or similar issues that I describe in this blog post, just remember you are not alone. 
I am here for my readers, and just remember that, no matter what shape or size your chest is, we are all beautiful. Society seems to think that women with a large chest are beautiful, while women with a small one are not. I think we all are if we choose the right bra and clothes to suit our shape, and if we value ourselves as much as possible at all times, we can always be beautiful. It's not all about what's on the outside,  it's about the way we feel on the inside,too.

Tuesday, 20 January 2015

International Day Of Acceptance (IDOA) 2015

Acceptance does not come easily to a lot of people, and especially acceptance of this who society sees as "different " - anyone with some kind of disability , health condition or illness. Every year, 20 January is a special day because people with disabilities, health conditions or illnesses are celebrated.  I started to spread the word about the day back when I recently took part in the 30 Day Blogging Challenge, and contacted Shine Charity for Spina Bifida and Hydrcephalus, and my blog post got shared by them!

I have  experienced a lot of bullying in my life because of my disabilities, and many assumptions have been made about my  abilities and disabilities. Today is also a chance to honour Annie Hopkins, the sister of Stevie Hopkins, the founder of 3E Loves Wheelchair Heart. She passed away on this day. I'm a very accepting person, and I decided to spread awareness in my own way today by creating photo collages, and posting them to Facebook,  Instagram twitter and Pinterest. Of course, I couldn't forget about blogging here. I also made a YouTube video. How did you celebrate today? 











Sunday, 18 January 2015

Unconditional Body Beautiful Post: Everyone's Beautiful

Body image is something that is important to a lot of people. Everywhere you look nowadays, there are magazine pictures TV ads, and films have all seemingly perfect – looking people in them. I have the added challenge because I was born with disabilities. 
Society unfortunately still sees disabled people as "different", but all my life I have fought to dispel that belief because I wanted people to see past my disability, and I also was quite a shy person so I decided that I wasn't going to wallow in my shyness, and I was instead going to do something about it. What I did was I decided to concentrate on my looks, and would try out my mum's make-up when I was about six or seven years old. I have always liked the way make up makes me feel, and although my parents and family members, and later on my fiance Alfredo, have said that I don't need make-up to look good, I always bought make up whenever I could with my pocket money, and then later on when I started saving my own money. This didn't just stretch to make up though, I have always been a real fashion addict, and have followed trends when I have wanted to, but ultimately have my own style. I would describe it as sophisticated and classic, because whenever I buy clothes I prefer to buy classic clothes  rather than something that is really high-fashion and then ends up going out of fashion quickly. I prefer clothes  that I can use over and over again, and that will not age with the seasons or years too much.

My oldest memory of feeling really uncomfortable with my body was  when I was six years old. Neurosurgeons  at what was then Oxford's Radcliffe Infirmary  hospital had  just operated on me to replace the "catheter" , or tubing that runs from my pressure valve inside my brain down to my abdomen just above my belly button. For those of you who don't know, this is called a VP shunt, and I  have one because I was born with Hydrocephalus, a neurological disability which means there's too much cerebro  spinal fluid inside my brain, and my body can't drain off on its own and it can't regulate the levels  either, so that is why  have got the shunt. Here's a more medical definition of hydrocephalus 

Inside every brain there is a clear fluid called "cerebrospinal fluid" (CSF). This fluid is made inside spaces in the brain, called ventricles. The CSF flows out over the surface of the brain and down the spinal cord before being absorbed into the bloodstream. CSF provides nutrients to the brain and spinal cord and removes waste products. It also acts as a cushion to protect the brain and spinal cord. 
Hydrocephalus is when children  have too much CSF in the ventricles in their brain, and the ventricles get bigger and begin to cause problems. 
Since the fluid is still being made by the brain, the build-up of CSF will cause pressure to rise inside the brain. This can then lead to signs of raised pressure and eventually damage to the brain, if not treated.
So, why do I have Hydrocephalus?

I have Hydrocephalus for the same reason I have cerebral palsy: because I was born three months prematurely I had my oxygen supply cut off. When my twin sister was born before me, the doctors and nurses didn't realise that I was still inside my mum .
I , like my twin sister Natalie, was unable to breathe from the moment I was born, and so was put on a ventilator . I had grade 4 (severe) brain bleeds on both sides of my head, and blood damaged both my brain tissue and the ventricles. These brain bleeds, along with my low-birth-weight (2 lbs 6 oz) and the fact that I was premature and a twin also caused my cerebral palsy


How was my Hydrocephalus diagnosed?

The doctors and nurses noticed that, day by day, my head size was increasing, and this is a sign that pressure inside my brain was increasing. They did a CT scan, and this revealed the pressure inside my brain was getting higher and higher and that I have Hydrocephalus. They also noticed that I have spina bifida occulta   , which is the mildest form of spina bifida where the spine has some openings but they are very small. I also have some scoliosis in different areas of my spine including the lumbar spine and the cervical spine. It was thought at the time I had to be put on the ventilator that my Hydrocephalus was caused by also being on the ventilator, which was the very thing that was being used to save my life.

The operation for my shunt was major brain surgery, and every time my shunt  stopped working (called shunt "failure" in the medical world) caused worry for my parents because they didn't know whether I'd pull through the operations, because a slight mistake by the neurosurgeons could prove  either very serious, resulting in even more brain damage than I already have, or fatal, as if I had never been operated on at any of the times when I was , I could have died because the CSF would have flooded my brain and caused swelling to the point where it could take no more.  

Here's what a  VP shunt system looks like:


Close up of a pressure valve

I had my shunt replaced 4 times in my life between the ages of birth and 11 years old. Each time, I'd have more scars on my body, on my skull, or abdomen. This is what the scars look like:
This is the scar from an operation I had when I was almost 12 years old. I had been complaining of very strong headaches, the kind that felt like my head was being crushed from above, like a massive hand was pressing down on it, but also from the sides and inside out. The kind that wouldn't let me move, because if I did I'd vomit. have visual disturbances or feel dizzy, so I was confined to bed for days. That meant more days off, so many to the point I began to wonder if the teachers thought I'd never come back. I was dur for a shunt "revision" at the time. This means I had to go with my parents to The Radcliffe Infirmary in Oxford to have a CT scan to see if my shunt was working OK. It was that time, but given that I had had such an unpreditable history until this point in my life, I was scheduled for an operation. I seem to remember it was a case of my parents and I going back to our family home in Wallingford, Oxfordshire, packing a bag and heading straight back to Oxford. That time, after the operation, I was hooked up to a blood pressure monitor, and had a drip for feeding. I was bedridden and when I woke up I saw that I was unable to move my head. In some ways, this was good for me because I felt so dizzy. It was so frustrating too. I can only remember wondering when or if my hair would grow back over the wound in my head, and feeling paranoid about having my hair  washed, cut or combed because then people would see it. With the years though, I have relaxed about this, but still make sure I tell whoever is doing my hair to comb it over the wound. When they do, even them using a comb softly causes me great discomfort and pain, because the sensitivity on my skull is heigthened due to so many operations in the same place. I ofen get headaches in different areas of my head, so having my hair cut, washed or dried is painful and uncomfortable, , but I  put up with it because I can't wait to see the end result!

Not One, But Two Shunts

I actually have not one, but two shunts. This is because my first shunts were put into the right side of my brain, and then the shunt was mived to the left side. On the right side of my brain, the pressure valve is still there, but is deemed "redundant" because it doesn't work due to not being connected to a catheter. The neurosurgeons left the pressure valve on that side inside my brain on purpose, because the operation was a delicate procedure, and taking it out would have meant more brain damage, and yet another difficult recovery. . So I have one working, and one redundant shunt. This is documented well in my medical history, but my neurologist still expressed her surprise at seeing two on my CT scan. Maybe there aren't too many people with two!

 The scars below are  my abdomen scars from my VP shunt operations.



Look at my photo, you will have no idea I have hydropcephalus, or that it's so serious. Fortunately with the years I learnt to love my body, and to fuel my love for fashion and beauty even mpore in spite of my disabilities. I have developed a "don't care" attitude towards the world, This doesn't mean I'm negative, what it means is that I think "so what if I have CP,hydrocephalus a shunt and deep scars, all this is a part of my identity.



Apart from the scars, another downside was that one of the symptoms I had of hydrocephalus was vomiting, and it was frequent. As a result, I lost a lot of weight, and there was a time when I was classed as anorexic. Cerebral palsy also causes its problems for me because when I eat foods like bread or potatoes, I start coughing when trying to swallow then because of the texture. I never liked Ready Brek as a kid, and still don't like this, or anything with this kind of texture, and due to my cerebral palsy I have always had a strong gag reflex when trying to swallow. For the most part though, many foods and drinks are fine, aoart from if I drink something that's too hot or too cold, because then I start coughing. 
I have also yoyoed with my weight over the years because of a combination of the problems I had with my hydrocephalus and not being able to exercise. Exercuses like swimming have always been recommended for me and, although I need physical help to move whilst swimming,  I really enjoy it. From ages five to eighteen, I did a lot of horse riding , and had many physiotherapy sessions throughout my life. 

Other People's Reactions To My Scars 
In general, many people haven't said anything about my scars because they can't see them, but sometimes I have shown some close friends. They have been both fascinated and shocked at the sight of them, and have always asked me about them. I have always been open and happy to talk about the story behind them, and still am, hence this blog post.
When I changed hairdressers, the hairdresser noticed my scars and asked me if I had had an operation there. I said I had, and asked her to cut my hair in a style where the scars can be covered by my hair. She was the first hairdresser to ever ask about them, and I am glad she did, because that shows acceptance. No other hairdresser who has cut my hair in my life has ever asked about them.
I was especially nervous when swimming time came around at primary school, and would ask my care assistant to help me into my swimming costume in a way that the other children in my class didn't see my scars. Some did, and made fun of me. I would ask to wait until everyone else was in the pool before I came out of the changing room and was helped into the pool.


To close this blog post, I want to say that no matter what disability you have, what you look like or what you have been through, everyone is beautiful!
This post would not be  complete without this song, Born This Way by Lady Gaga. Love this song! it's a great song to make anyone feel great about themselves.


The Theory of Everything Official Trailer #1 (2014) - Eddie Redmayne, Fe...

Thursday, 15 January 2015

30 Day Blogging Challenge Day 30: Final Blog Post

Today is the final post in my 30 day blogging challenge, and that means it's also a roundup post. So far, I've written 30 posts, all on a different subject, which is a feat in itself, and I have actually done the challenge down for the second time. The first time I did the challenge was in October 2014, and so I'm going to write a comparison post about the statistics that I got from last time I did the challenge, and also this time as well as I learnt.
 Firstly, I would like to send a huge thank you out to Sarah and Kevin for welcoming me back to the challenge with open arms, and making me feel so at home. The great thing about the 30 day blogging challenge Facebook page is that it really does feel like a community, with everyone cheering everyone else on.
Here are the comparisons for last years and this year's blog challenges:
What I learned was that no matter how busy you think you are, you always have time to write a blog and be disciplined enough to write a post every day if you just make more effort to try and fit it around what you do every day.
I'm not  saying it's easy, it's far from easy, and what I found the most difficult was being creative in which blog title I chose. Somehow, this time though, I manage to think up the blog challenge titles more easily than last time. Perhaps it's because I did the challenge before, or perhaps I'm just getting more imaginative when I think about them. It was quite easy from me this time because of the fact that events like my birthday and Christmas fell within the time period that the blog challenge was on, and so I just wrote about my experiences of those days .
Overall, I did better with getting comments in 2014, but got a higher post reach for my most popular post this year.
I'll definitely do the challenge again! 

2014  2015 
Comments (total)  20 16
Most popular post reach  54 102
Least popular post reach  16  3

Tuesday, 13 January 2015

30 Day Blog Challenge Day 28: A Great Achievement

http://www.dailymail.co.uk/news/article-2734451/Bond-brothers-Wheelchair-bound-twin-cerebral-palsy-makes-history-completing-gruelling-16-hour-Ironman-brothers-side.html

As a twin, I always look for news stories about twins, and also those with the same disabilities as me. This  article's headline caught my attention because I know some people who have done triathlon challenges, although the people I know don't have any type of disability. 
My thoughts after reading the article are that I am happy for them for having completed it, and that it really does show the great bond they have as brothers and twins. On the other hand, Steen could not have done this on his own so would have needed to have someone's help anyway. It's nice to hear and see that it was his own twin brother who stepped forward with the will to go through this with him, and to me that makes the achievement even more personal for them. The feeling of happiness afterwards must have been amazing, and is one that will stay with them for the rest of their lives. 
To me, this is not "inspirational," but just something any brother who really cares for his brother would have done, and even more so given that there is the natural and automatically strong bond of twins  between the two of them 
Take a look at the article, and see what you think! 


Monday, 12 January 2015

30 Day Blog Challenge Day 27: Is Having Cerebral Palsy So Bad?

As everyone who reads my blog here knows, I was born with cerebral palsy and hydrocephalus. Throughout my life so far, People's reactions to it have been different. There have been people who have bullied me, mocked or not understood my disabilities well. There have been those who acted surprised that I am intelligent "but you're SO imtelligent" "use your intelligence to solve your problems in life." Appalingly, this last statement was also uttered by a doctor. 
Sorry for them, but life doesn't work that way. There have been people who have labelled me as the person who stood out, the person who "didn't understand" or the maths teacher who told me I'd fail my  maths GCSE exam every day I was in her clas just because I  was in the lowest set for the subject. Ifyou're wondering whether she was right, I didn't fail, I passed. I got an E grade, but I passed. Even before I have memory of it, my intelligence was  been debated, and still is, by people who don't understand the meaning of CP and hydrocephalus, much less how it affects me.  
I, like many people with disabilities, have experienced both sides of the story, from people having utter pity for me, to those who have utter admiration. 
I'm only human. I make mistakes in life, and have regrets, but I also make the best of things, and always have done. Yesterday I was told having CP must be "awful" and I responded that I was born with it and hydrocephalus, and don't know life without it.   Yes, there are good days and bad days, but doesn't everyone have those whether they are disabled or not? I'll always remember something my neurologist told me, that what life deals us is often makes the fact that a person is has the disability or disabilities, they do, with all it's  related problems, pale in comparison. 
For example, right now, I am finding that the proorities in my mind of a future move, children or marriage, is causing more problems and worry to me than the fact I have the dissabilities I do does, because everything about my disabilities is just a long standing fact, definite, and "just how life is." 
The other things, however, are vital ingredients to Alfredo and I in life, what we want for ourselves, and therefore take more importance, because I will always have my disabilities. 
I'm proud of the fact I have the skills I do, that I can speak Spanish fluently, that when people value me, they value my kindness and the fact I am a good listener.  I value the effort and time I take to work on my novels. 
Above all, I would say I have a good life, I have people who love me, confidence in myself, and a drive to reach my dreams, which is all you need really. I'm also proud of the fact I don't give up, despite people assuming they would in my situation. 
My question is, why? Why would you do that? OK, I almost died at various points after I was born, but it's the people who fought for me to live, who thought my life was worth saving, who I am truly grateful to. To my parents who persuaded the doctors to keep fighting for me when the prognosis was hopeless, and to the doctors and nurses who fought to bring me into the world and then to get me out of the NICU  despite the fact they knew I would face a lifetime of complex disabilities. 
To every neurosurgeon who has ever replaced one of my faulty shunts, and given me back life. 
Back to the title of this blog post, having cerebral palsy  and hydrocephalus isn't "bad" at all: after all, life is what you make it! 


 

Sunday, 11 January 2015

30 Day Challenge Day 26: International Day Of Acceptance (IDOA) 2015

20 January  didn't mean anything to me until a year ago, when I read on  the internet that it is a special day really. The disability awareness company 3E Loves Wheelchair Heart set aside this day to mark the need to remember Annie, the founder's sister who passed away. She was an advocate for disability awareness. Her vision was that all disabled people were recognised and accepted. The symbol the company uses is similar to that of the internationally-recognised symbol of a person in a wheelchair, but the company has cleverly turned the "wheel" part of the symbol into a heart.
Spread the love using the motto  " embrace, educate, empower!" 

How YOU can spread the word before the big day: 

Like the Facebook page www.3elove.com
Like www.3elove.com on Twitter
Find them on Pinterest and Instagram. 

Using the hashtag #DayOfAcceptance

Buy some merchandise from their store 

Go  to http://threeellc.com/idoa/ and finding out more about the International Day Of Acceptance . 



Tell your friends and family about it too and get them to spread the word! 







Saturday, 10 January 2015

30 Day Blog Challenge Day 25: A Round Up Of The First 10 Days Of 2015



It seems a long time since 2015 started, and since then I've been really busy. I have been making much more of an effort to think about and plan for, the future with Alfredo, or at least for the bits that we have control over. I have done some more blog posts for the 30 day challenge, and also read six books so far. I have joined more Facebook groups to help me spread awareness of cerebral palsy, Hydrocephalus and other disabilities, and am getting my entry ready for the International Day of Acceptance (12th of January each year)
which is run by 3E Loves Wheelchair  Heart. As always, I am also working on my novels, and I now have all three of the ones that are in my trilogy as proof copies . I have definitely started as I mean to go on, and I hope that you all have a great 2015. What have you been up to in the first 10 days of the year ? Leave a comment!

Friday, 9 January 2015

30 Day Blog Challenge Day 24: Let's Talk About Babies


Alfredo and I have been together coming up for 9 years in March, and ever since our relationship started, we've been thinking about the possibility of having a family, and have talked about it on and off. Today was the first time we talked about it again seriously, and so far I have done quite a lot of research over the years. I've had ultrasound tests , and I have been told that the possibility of me being able to get through a pregnancy is good, and that I am an  "high-risk" pregnancy because of my disabilities, and also because of the fact that I have a VP shunt in my brain to drain off extra CSF from my brain and skull because of my Hydrocephalus. The real danger with pregnancy and my shunt would be that if I was to be able to go through a natural labour, the pushing action would mean that the pressure inside my brain would rise , and I could be in danger of having shunt failure again. If this were to happen I would be incredibly ill, and would be in danger of death unless I was operated on within four hours of the symptoms of my Hydrocephalus starting.
As it so happens, I am unable to push, but the precaution has to be taken because of my CP and Hydrocephalus that I will have to have a Caesarean if I were to give birth. To me, this would not only mean the safest way of allowing me to have a child, but also mean the downside of being uncomfortable afterwards, as I heard  that many women are, and also having more scars. I thought I already had enough because of my Hydrocephalus operations, and because some of those scars are around my abdomen, they would be near the same area that I would have scars and if I were to have a Caesarean. Overall though, the idea of having more scars doesn't bother me, because I have always seen my scars as unique to me, and they show what I have been through in life. So, all we need to do is to more planning and talking to my gynaecologist and neurologist, and I have to sort up my medication situation because this won't be good for the pregnancy. Then we just wait and see! My general feeling is one of being scared and excited, but the excitement outweighs the fear by miles.
I have also always wondered about the possibility of me having twins because I am a twin. Anyway, whether Alfredo and I end up with one child or more , I'm really looking forward to the possibility of having this chapter in my life, as it is something I've always wanted. I know that Alfredo will be a great dad too.


Thursday, 8 January 2015

30 Day Blog Challenge Day 23: A Surprise Through The Post

30 Day Blog Challenge Day 23: A Surprise Through The Post 

On 3 December last year, I finally finished editing my third and final novel in The Spellbrooke Trilogy, and sent my manuscript off for the proof copy   to be printed. I chose  standard postage because I wasn't in a rush to receive it. I was just thinking last week that I was wondering when it would arrive. 
Just then, the doorbell rang, and there was the postman with a parcel wrapped in stiff cardboard. Sure enough, when Alfredo opened it for me because I don't have the strength or dexterity in my hands arms or fingers to do so, we saw my book inside. 
I now have all three of The Spellbrooke Trilogy novels as proof copies! That is pretty good going :) 
I plan to publish the novels in this order*
The Spellbrooke Trilogy: Spellbrooke (Book 1) 2015
The Spellbrooke Trilogy Return To Spellbrooke: A Winter Curse (Book 2) 2016 
The Spellbrooke Trilogy: The Legend Of Spellbrooke (Book 3)  2017

* Unless stated otherwise  by the  author. Updates will be posted on my blogs and  on social media. 

Twitter @AuthorKCH
Facebook Author Katherine Claire Hayward 





Image Copyright ©2014 Katherine Claire Hayward 
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All rights reserved 




Wednesday, 7 January 2015

30 Day Blog Challenge Day 22: Wear Green For Cerebral Palsy 2015 And Other Events

I like helping people as much as I can I despite my disabilities. That's why I occasionally create Facebook events around various themes. Last year I created an event called Wear Green For Cerebral Palsy Awareness 2014, and yesterday I created the same event  for this year. 
To participate, all you need to do is go to the Facebook page in this link https://www.facebook.com/events/669557266482035/?ref=22


and select whether you are "going" or not. This is a virtual event, and the objective is to get as many people wearing green as possible on March 25. So, whether you have Cerebral Palsy or know someone who does, spread awareness by wearing green! 
I started to invite people to the event yesterday and will continue for as long as I can to invite people because  Facebook puts a limit on the amount of people I can invite. Please do not ignore the invitation, which will be sent to your Facebook account. True, one day of raising awareness will not make a difference  really, but as my CP is a part of me, I can't help but want to raise  awareness at any opportunity I get. 
So, if CP is important to you in some way, big or small,  help raise awareness by joining my event! Other inmportant days for me are  1 May, which is Folic Acid Awareness Day,25 October which is Hydrocephalus Awareness Day    and 1 October which is World Cerebral Palsy Awareness Day.  Whether  an event is worldwide or not, I will market it as worldwide, because to me it is   important  to have  as   much awareness and support as possible, from all corners of the globe.      
Here's a screenshot of the page to help you out with finding it. 

The more  people who join the better. 
See you there! 

  

Tuesday, 6 January 2015

30 Day Blog Challenge Day 21: A Relaxing Day Amongst Busy Ones

I took a break from my novels today  bcause I wasn't feeling well, and after Alfredo took our Christmas tree down, we watched a few films on TV. One was the 2010 remake of Karate Kid with Will Smith's son in it, and the other was School of Rock. I didn't think I'd like the first too much, but I was pleasantly surprised, and School of Rock was very funny in parts. I would recommend both films.  We were both glad of the break. 

Monday, 5 January 2015

30 Day Blog Challenge Day 20: Being In A Relationship


I have now been with Alfredo since March 2006, and we have been engaged since my birthday (22nd December) 2008. In 2013, we took the decision to have a civil partnership ceremony.
We both would like to get married, and have a family . We are planning to move in the near future, and with it being any year I think this is the best time for anybody to make plans for their lives. We have had our ups and downs because life is never easy, but we're determined to make things work. I never thought I would be in a relationship because I didn't have the confidence in myself from many years, as I've mentioned a lot on this blog, but I'm so glad that I have found Alfredo who is committed to me, because many people never find that special person. It doesn't matter to him I have disabilities, and he is my rock. I really hope that the time comes when I will be writing in a blog article here and telling you that we have moved and that we have got married and had children. For us these are important steps in making life complete.

Sunday, 4 January 2015

30 Day Blog Challenge Day 19: Film Review - Lorenzo's Oil.


 As part of an effort to improve my blog, I will now be reviewing books and films related to disabilities and medical conditions. The first film I am going to review is Lorenzo's Oil. 

Lorenzo's Oil  is a 1992 film starring Susan Sarandon and.Nick Nolte, with  Zach O' Malley Greenburg playing the role of Lorenzo.
 The film is based on the true life story of Lorenzo who has  Adreonleukodystrophy (ALD). His parents notice symptoms  when he is five years old. The  condition is a defect in the X-chromosome which is passed onto him by his mother. What happens is it kills off white brain matter and causes neurological disability. In Lorenzo's case, over time this meant that he got to the point where he was bedridden and couldn't move, walk or talk.
 The film is incredibly touching, and I really enjoy any film that is based on the life of anybody with some type of disability or medical condition. I wish there were more films made like this. What struck me about the film is that the whole scenario is really well done, and the film is really realistic. Sometimes, I've seen films based on true stories that are not as realistic. What I liked about this was the fact that Susan Sarandon was in it. She is a great actress, and I have seen many of her films. Here are some articles on the more scientific aspects of ALD. Lorenzo died aged 30 at his home in Washington DC with his dad and close friend nearby.


  Information about the film and critiques http://en.m.wikipedia.org/wiki/Lorenzo%27s_Oil

Information about Lorenzo's parents and their fight to create Lorenzo's Oil, a treatment for ALD. http://en.m.wikipedia.org/wiki/Augusto_and_Michaela_Odone

 More about Lorenzo himself. http://en.m.wikipedia.org/wiki/Lorenzo_Odone


The Myelin Project researches about, and raises awareness of, ALD. Read more here


My personal opinion is that the film was very good in providing an insight into adrenoleukodystrophy which I otherwise never had heard of , and also into Lorenzo and his family's life. I would have liked to have seen Lorenzo later on in the film because at the end it says that Lorenzo made some progress by being able to control a computer which allowed him to talk. All the parts were very well acted, and the film is very cleverly done but also very emotional.

I was very saddened by news of his death. 

The film 


Lorenzo Odone


Saturday, 3 January 2015

30 Day Blog Challenge Day 18: Trying To Keep Warm.



Today it's quite cold day, and I've never particularly like the cold. I've always felt it easily because of not being able to regulate my body temperature, and so it's difficult to stay and keep warm. A lot people with cerebral palsy have this difficulty, and it's a difficult one to cope with.
 What I do is I have to use a hot water bottle when I'm in bed, and Alfredo will make sure that I'm dressed in layers, but sometimes even putting more layers and doesn't make me warm. We have the heating on and sometimes even THEN it is not enough. We often drink a lot of hot chocolate and tea. Luckily my mum bought us some hot chocolate for Christmas we haven't used that yet though. I don't know about you, but winter hasn't been here for very long and I am already looking forward to spring and warmer weather ! Summer is my favourite season of the year.

Friday, 2 January 2015

30 Day Blog Challenge Day 17: Changes To My Blog


We are into the new year, and so far I've been concentrating on my reading challenge, and also on my novels again. Alfredo and I think this year will be a busy one for us . Our Christmas tree is still up, and it still looks just as good as it did when we put it up the first time. We have been watching some films, and the Christmas spirit still seems to be in the air. Yesterday was my cousin Richard's birthday, so I sent him a message on Facebook. As always, I am still reading writing and blogging!

I have decided there will be changed to my  Katherine Hayward My Life With Cerebral Palsy Facebook page because in the last year I have seen traffic to the page has not increased, but has decreased a little. So far the maximum number of page members I have ever had there is 160, and since then it has decreased to 157 and is not picking up no matter what I do. I feel passionate about Cerebral Palsy , Hydrocephalus and disability awareness, so if you do to take the time to stop by and like my page. 

https://www.facebook.com/KatherineHaywardMyLifeWithCerebralPalsy?ref=hl

I have also noticed I get barely any comments on the page from anyone. The page is for people to see.
I know privacy settings often affect the visability, and I am careful about which setting I use. 

NEW CHANGES ARE 

1) Awareness Caises in Blog Posts. I always name the awareness causes ebery month in a Facebook post, but I am now going to blog them. 

2) More Build-up To Important Disability Events  for example the International Day of Acceptance (IDOA) run by 3E Loves Wheelchair Heart, as well as International CP Day and Hydrocephalus Day as well as any other awareness day, week or month. 

3) More Photos And Videos 

4) More About My Life 

5) More  Quotes About Life's Lessons. 

6) Film  And Book Reviews About Or By People With Disabilities And Conditions. 

So, without further ado, let's get started with more causes. The awareness causes for this month are:

Mental Wellness Month
Thyroid Disease Awareness Month
Volunteer Blood Donor Month
Birth Defects Prevention Month
 Cervical Cancer Awareness Month
 Family Fit Lifestyle Month
 Financial Wellness Month
 Glaucoma Awareness Month 
Healthy Weight Awareness Month
Mentoring Month

Personal Self-Defense Awareness Month 

Poverty In America Awareness Month 

If you have any questions about any of my disabilities, just ask. I would welcome more comments on my blog  posts too, and any discussion they may raise. Please be respectful of me, my disabilities, views , life and those of others. Don't be shy, I would like to know you so send a message or comment on my posts! :)  
Mention my blog to your friends and family, anyone you think will be interested. Together, we can bring more awareness of CP, Hydrocepahlus and Blindness! 

Thursday, 1 January 2015

30 Day Blog Challenge Day 16: Then And Now

Happy New Year!
 Today I have decided to reflect back on 2014 a little, and obviously forward to  what I hope to do in 2015. 

I have many good memories from 2014: from dictating the next two books The Spellbrooke Trilogy,  in my up in fantasy trilogy for children, to receiving the printed and bound proof copies in the post. I didn't reach my goal of wanting to have the first book in the same series finished and published by the end of the year, but my new goal is to try and get that done before the end of this year.
My parents came over to visit in May for a couple of days after we had not seen each other for a while, and we went to Peggy Sue's one of a chain of 1950's American diner-style restaurants that I had been wanting to visit since my birthday in 2013. The restaurant has a great atmosphere, and I would like to go there again sometime.
I also managed to take part in both the April and October Dewey's  Readathon events, and also both of the Camp NaNoWriMo events in April and July. As you can see, April was a busy month! I did NaNoWriMo again in November. A lot of this year has been spent reading, preparing to write a book or writing a book. 

Last night we had a chinese meal and Alfredo watched a TV show called Stingers which is Australian and was apparently cancelled due to the time slot because there's such a huge difference between there and other parts of the world. I really like it too. I decided to start reading what is my first book of 2015. It is called Taken and is by.  Sharon Hamilton. It is a true story and very well written.  

At midnight, Alfredo got me out of bed where aI was reading and trying to warm up with the aid of my hot water bottle and the heating. My circulation is really bad and I can't regulate my body temperature. We counted down and had the orange segments (see my previous post on this custom). Then it was time for bed because somehow Alfredo is always chosen to work on New Years Day! 

I am going to continue my Goodreads Reading Challenge for the year, and I hope to finish my first book today. I have challenged myself to read 120 books. 

This year, I have been asked to write a guest opening post for the April Dewey's Readathon event, so I am looking forward to that. It is a great event anyway, and a good opportunity to get a weekend of reading and blogging in. It will be especially welcome if I decide to do Camp NaNoWriMo again, because it will give me some sort of a break from working on my novel. I am planning to do these events again, but it just depends what else I have to do. Alfredo and I are hopefully planning to move this year as well.
I hope you have a healthy and happy year where your wishes come true.
 I really hope certain things work out for Alfredo and I. We are real fighters and do not deserve them not to. I shouldn't have to mention what these are, if you know me well you'll know.

New Years Day is a hard day for me and my family, because, 33 years ago, it was the first day since mine and my identical twin sister Natalie's births that my parents were unable to visit her in hospital because she had passed away the day before. Wherever you are Natalie, I still miss you knowing you were my twin!