My identical twin sister and I were born 3 months premature weighing 2lbs 6 ounces. Lack of oxygen caused a grade 4 bilateral brain bleed. I had cardiac arrests and multiple lung collapses. I have Spastic Quadriplegia Cerebral Palsy and Hydrocephalus. I was on life support in the NICU for my first two weeks of life. Everyone thought we'd die. . My sister did. I have a shunt inside my brain for my hydrocephalus . I survived when no one thought I would. This is my story
Sunday, 23 December 2012
Birthday Blog entry
Yesterday was my 31st birthday. I can't believe where the years have gone but I'm really proud of what I've done in life up till now. It's about 14°C, so it is actually not too cold and a nice temperature for this time of year I had a lot of nice phone calls and text from friends and family, plus cards and some gifts. I'm really pleased that I've got 3E loves wheelchair heart stuff. I'm now the proud owner of a Hoodie, some badges, some wheelchair heart decals , and a wheelchair heart temporary tattoo! We ate Chinese food and then had my birthday cake which was an ice cream cake with vanilla ice cream, caramel ice cream, a biscuit base and a chocolate topping – it was delicious!
We also went out to see the Christmas lights on streets near where we live. I'll put some more photos on Facebook soon.
A couple of days ago, we went to see Madrid horse week which
was an exhibition with showjumping and events such as gymnastics on the horses and processions by members of the police and other organisations. I loved it!
Today I'm just relaxing doing some reading and thinking about working a little bit more on my book. I'm really excited about writing it. I'm also really glad that I have Dragon dictation software as this is a real help as it always has been to me in the past when I was studying at school and university, as throughout my life my fingers and hands spasm and cramp to the point I cannot hold a pen or press a key (even on a virtual keyboard) and am unable to move
any part of my hand as the spasms are painful when I write or type for any length of time, no matter how short. An OT told me this is due to the over-activity of the muscles in my arms and hands and spasticity as its hard for me to achieve adequate posture to hold a pen or press a key.
For me, my birthday always has a slightly melancholy undertone, as I remember Natalie, my identical
twin, born just minutes before me, and wish she were here. Happy birthday for yesterday, I love and
miss you. That said, I'm glad I have my sister Nicky to make up for Natalie not being here.
I'm really looking forward to all my birthdays still to come, and I plan to enjoy every one of them equally as much!
I've decided that I want the book published in various formats including paperback e-book a large print format book and audio book in order to make it as accessible as possible to as many people as possible. I also want to start making a couple of videos for my Facebook pages.
Friday, 14 December 2012
Christmas and my birthday are almost here!
So far in our Christmas preparations, we've put up our tree, put up the Christmas cards so we can see them better, bought lots of oranges and satsumas, and bought the turrón - which for those of you who don't know is like nougat and typical at Christmas in Spain. We've bought milk chocolate, white chocolate and coconut varieties. We've not yet decided if we will eat chicken, turkey or something else. I've posted off some Christmas cards and am working on getting others sent by email or as ecards. We have also bought some Pannetones to eat. We've got snow spray for windows and doors which we've yet to use. As usual I'm still thinking about what to do for my birthday. The weather's getting colder and I hope it holds up for then!
Merry christmas and a very happy 2013 to everyone!
Merry christmas and a very happy 2013 to everyone!
Monday, 3 December 2012
International Day of Disabled People 2012
Today is the International Day of Disabled People, which I found put about a few weeks ago whilst looking on YouTube for interesting videos for all my pages.. This, like November 17 (World Prematurity Day - about which I have another blog post) was a day I was especially looking forward to, as it spreads awareness of disabled people worldwide. I found out today whilst watching some current affairs programs on TV that today is actually part of Disability Week, which started on 27 November. Yesterday, there was a huge march in Madrid and today the same thing happened in Barcelona and Valencia, an opportunity for disabled people to assert their rights to care services, and anything else needed.
I would have loved to have been there, but I saw good coverage on TV. I'm really glad today exists, although I don't think there's nearly enough done to promote it before the day, as it was lucky I looked on YouTube, or I wouldn't have known about it. I certainly wasn't aware it even existed this time last year!. Despite today being the day it is, I think society still has a long way to go in its
acceptance of and
provision for, disabled people. Even the level of understanding of disability in general is far from acceptable. I'm constantly having to explain about my cerebral palsy, hydrocephalus and the severity of my vision. I don't mind though, I'm quite happy to explain and always have been.
I have to say, today has made me feel prouder than ever to be disabled: after all, I don't know any different, and my disability is, always was, and always will be part of me. Please feel free to see
my blog post about World Prematurity Day
http://katherinehaywardmylifewithcp.blogspot.com.es/2012/
11/yesterday-was-world-i-didnt-realise.html
I would have loved to have been there, but I saw good coverage on TV. I'm really glad today exists, although I don't think there's nearly enough done to promote it before the day, as it was lucky I looked on YouTube, or I wouldn't have known about it. I certainly wasn't aware it even existed this time last year!. Despite today being the day it is, I think society still has a long way to go in its
acceptance of and
provision for, disabled people. Even the level of understanding of disability in general is far from acceptable. I'm constantly having to explain about my cerebral palsy, hydrocephalus and the severity of my vision. I don't mind though, I'm quite happy to explain and always have been.
I have to say, today has made me feel prouder than ever to be disabled: after all, I don't know any different, and my disability is, always was, and always will be part of me. Please feel free to see
my blog post about World Prematurity Day
http://katherinehaywardmylifewithcp.blogspot.com.es/2012/
11/yesterday-was-world-i-didnt-realise.html
Friday, 23 November 2012
No need to pity me!
Yesterday, I saw the above photo on a website and I immediately liked it. As I have already said on my Facebook page, I do not like anybody pitying me because of my disability.I think this photo is a very simple but effective way of getting an important message across: that disabled people should not be pitied, but that we should be valued and appreciated for what we can do,our talents and dreams rather than belittled and made fun because of how we look,what we can't do and how we move or do something. I have heard people say to me " what a pity you have the disabilities you have " "what a pity you can't do this or you can't do that " "what a pity you can't join in or do what you want when you want" . This leads me on to saying that many of us with a disability due to our needs and how our disability affects us ( which varies from person to person) will find it difficult to be spontaneous and do what we want no matter how much we would love to be able to do so. All of us, no matter what our disability, have a lot to offer. I have posted various posts on Facebook about what I have achieved in life and what am proud and thankful for. I think it is about time that people stop pitying disabled people and thinking that having a disability is a terrible thing when really it is part of what makes us unique
Thursday, 22 November 2012
What I'm Thankful for
So, today's Thanksgiving 2012. Despite the fact it's not celebrated in Europe, I decided to show my Thanksgiving spirit and send a greetings card courtesy of Greetings Studio on my iPad. Here's a list of what I'm thankful for:
I'm really thankful for friends, from the past and present who are in touch with me via Facebook, email, Twitter and phone. as well as new friends I've made via Facebook- thanks Charisse Hogan, Kristen, and all those in the group You Know You Have CP When...
You're all great inspirational people
I'm thankful for my fiancée Alfredo without whom I'd not have learnt things about life I know now or had many experiences. Thanks for your unconditional love, patience, and understanding and for helping me fight for my rights every step of the way and for accepting me just as I am.
I'm thankful for all the basics in life, a home, food, clothing, love, as there are so many people who don't even have these things. I think we should all be grateful for what we've got.
I'm really thankful for friends, from the past and present who are in touch with me via Facebook, email, Twitter and phone. as well as new friends I've made via Facebook- thanks Charisse Hogan, Kristen, and all those in the group You Know You Have CP When...
You're all great inspirational people
I'm thankful for my fiancée Alfredo without whom I'd not have learnt things about life I know now or had many experiences. Thanks for your unconditional love, patience, and understanding and for helping me fight for my rights every step of the way and for accepting me just as I am.
I'm thankful for all the basics in life, a home, food, clothing, love, as there are so many people who don't even have these things. I think we should all be grateful for what we've got.
Sunday, 18 November 2012
Looking back on World Prematurity Day 2012
Yesterday was World Prematurity Day. I didn't realise this even existed until a couple of days ago as I was researching on Google for picture quotes and images for my page Katherine Hayward, my life with cerebral palsy. When I found information about world prematurity day, I thought this was a great chance to put a little bit more about me on my page and so next thing I know I'm uploading my baby photos to my Facebook page my feelings in general about prematurity day is that I think it is a really good cause to remember and share and spread the word about. I am pleased that this cause is also within the causes remembered this month. I think premature birth is something that happens, but that is not much talked about as it can be a very painful and upsetting subject for people to talk about. Years ago I would get very upset looking at my baby photographs but over the years I have come to accept that that is just what happened and how I ended up coming into the world. I feel. really blessed having had an identical twin sister , and she is always in my thoughts.
I think that organisations such as Tommy's and
March of Dimes do a wonderful job in spreading the word about premature babies, and thank all the hospitals I was in when I was a baby for doing their little bit to save my life and treat me at various stages throughout my life. These hospitals are Kingston Hospital, Kingston upon Thames , Surrey , UK and Queen Charlotte and Chelsea Hospital, London. Also great Ormond Street Children's Hospital, London for fitting my first hydrocephalus shunt. In addition I owe huge thanks to what was then the Radcliffe Infirmary
in Oxford for all their dedication and care of my hydrocephalus which was problematic during the first 11 years if my life, and also those who I have seen at the John Radcliffe and Churchill Hospitals in Oxford. I'm indebted to all the staff on Dr María Eugenia García Garcia's Neurology team at Hospital Clinico San Carlos, Madrid as well as to her for all her help, faith and support. Thanks to staff at the Centro de Especialidades Modesto Lafuente, Madrid, and to Dr. Emma Jarvis, my GP at the University Of Reading Medical Practice for her kind and gentle manner. Thanks to Dr Augusto Lavilla
Gómez, my ex-GP for your great sense of humor and efficient way of working. Thanks also to my current GP Margarita Tejerina de
Mata for being so patient and understanding, and thank you to all the nurses who saw me too!
Sunday, 11 November 2012
A lazy Sunday
Today is Sunday, 11 November 2012. In the UK it's Remembrance Sunday where we remember all of the people who died at war. On my Facebook page I decided to take it a step further and also remember War veterans and other soldiers who are alive but were left disabled by injuries sustained from the war . The symbol used for Remembrance Sunday is a red poppy.
With it being Sunday it is also a lazy day from me. I have been reading my book which is called Lone Wolf by Jodi Picoult.(Which I will write a review of on my "My Reading Paradise" Facebook page) . I usually also watch a film in the afternoon with Alfredo. I'm also looking forward to eating a Chinese meal for lunch! Today I'm really tired because I had a convulsion last night, and it really takes it out of me and makes me exhausted, as it means I can't sleep properly.
I hope everyone who reads this is enjoying my blog entries so far and having a great weekend!
Friday, 9 November 2012
The importance of music
Today I downloaded some software to my computer as I wanted my songs from my iPad in the computer so I can download them to my MP5 player. This took longer than expected, but I finally did it. I was pleased about this as navigating things on the computer often take me awhile especially if its a new thing I've not done before, and depends how user-friendly the site/ application/ software is. Usually I just stick a CD I already have into my computer and rip (copy) the songs into iTunes/Windows Media Player or similar, and from there I sync the songs to my MP5 player.
Recent downloads of mine are Seal Best 1991-2004, Palabras Secretas by Calle París, Hacia lo salvaje by Amaral (both Spanish bands) & Speak Now World Tour by Taylor Swift. My taste in music is quite varied : Country (Taylor Swift and Sheryl Crow), R&B (Rihanna, Seal) electronica/dance (Kosheen/Sneaker Pimps), pop music, flamenco, salsa, chill out music, and some chart music depending on what's out. I love songs by Tasmin Archer.
I love listening to music and find it really relaxing !
Wednesday, 7 November 2012
Not such a good few days
I'm not feeling so good today and haven't been since yesterday. I think it's a combination of the cold and my usual aches and pains due to CP and my postural difficulties. How I cope with it is getting Alfredo my partner to rub some anti inflammatory gel onto my back, neck and legs or use our infrared heat lamp. Yesterday I used the heat lamp. It made me relax so much I felt sleepy and almost burnt myself! Oops!. The heat lamp is great for relaxation. I love reading so that makes me relax too. The cold dark mornings don't help. I am also hoping to not get a cold. In fact, I surprised myself yesterday when my effort to make a home made vapour rub with a body lotion and some eucalyptus oil I had and simply mixing the 2 together. I got this idea from the Internet.
I'm looking forward to the spring and summer, which is much more my type of weather :-)
The pain is quite sharp and throbbing, but I also have numbness. I find tiredness and being in pain increases my muscle spasms and convulsions , some of which I had yesterday.
I'm hoping I feel better soon.
I'm looking forward to the spring and summer, which is much more my type of weather :-)
The pain is quite sharp and throbbing, but I also have numbness. I find tiredness and being in pain increases my muscle spasms and convulsions , some of which I had yesterday.
I'm hoping I feel better soon.
Monday, 5 November 2012
My experience of Halloween and Bonfire night
So Halloween 2012 has come and gone. For me, this Halloween has been fun and different from other years. I'm not the kind of person to go out on Halloween and prefer to stay put, especially as the weather getting colder doesn't help. Not to grumble, but the cold causes me to feel uncomfy and get more spasms. Instead, a few days before the day I bought some Halloween muffins which were basically chocolate-chip muffins with an icing pumpkin on which I thought were cute (which were delicious by the way!) . I also made use of my iPad apps and sent halloween cards to family and friends. The day itself was quite a lazy one, spent watching halloween-themed films (I got quite in the spirit of it, I felt) and having my halloween makeup done. I chose a cat as my design as I'm known as "Kat" by family and friends. You can see my pictures on my Facebook profile page. http://www.facebook.com/katherine.hayward.94
Today in the UK is guy Fawkes night or "Bonfire Night". http://en.wikipedia.org/wiki/Guy_Fawkes_Night.
It has always been my least favourite night of the year. Many don't understand why, but the explanation is that any loud or sudden noise causes my startle reflex to go haywire. This is common in a lot of people with cerebral palsy, and, to others, looks like I'm "jumping out of my skin", as my whole body spasms, and causes a lot of stares. People ask what's wrong, or if it hurts me. The answer is no. People's reactions is to say I'm "jumpy" or "nervous" but it's nothing to do with that. Fireworks are absolutely no fun for me. I can see why they'd be for others, and it's a good excuse to get people together. That said, they do look pretty, I must admit. So, no offence to anyone who's planning to celebrate any event that involves fireworks, but I'll always turn the invite down. I now understand why my cat Tala prefers to spend the evening hiding under my bed!
Today in the UK is guy Fawkes night or "Bonfire Night". http://en.wikipedia.org/wiki/Guy_Fawkes_Night.
It has always been my least favourite night of the year. Many don't understand why, but the explanation is that any loud or sudden noise causes my startle reflex to go haywire. This is common in a lot of people with cerebral palsy, and, to others, looks like I'm "jumping out of my skin", as my whole body spasms, and causes a lot of stares. People ask what's wrong, or if it hurts me. The answer is no. People's reactions is to say I'm "jumpy" or "nervous" but it's nothing to do with that. Fireworks are absolutely no fun for me. I can see why they'd be for others, and it's a good excuse to get people together. That said, they do look pretty, I must admit. So, no offence to anyone who's planning to celebrate any event that involves fireworks, but I'll always turn the invite down. I now understand why my cat Tala prefers to spend the evening hiding under my bed!
Sunday, 4 November 2012
Welcome to my blog!
Hi everyone! I'm really happy to present my new blog. I created it as I wanted a blog page along the same lines as my Facebook page (which has the same title as this blog). Enjoy! Feel free to also visit my Facebook page at http://www.facebook.com/KatherineHaywardMyLifeWithCerebralPalsy?ref=hl
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