List of Health and Disability Awareness Days, Weeks and Months

List of Health and Disability Awareness Days, Weeks and Months

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? 

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...

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

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! 

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!