Today is World CP day. As I think back over the last year so far for me, it is clear that it’s not CP that brings me the most challenges, but it is society that makes them harder. We are still fighting for housing and ways to pay for prescribed equipment which is hard. I am all for more affordable housing being built but society has other plans.
For those of you who are new to my blog, here’s a bit about my Cerebral Palsy story. I was born at 29 weeks on December 22 1981 in Kingston Upon Thames, south London with my identical twin sister Natalie. We weren’t expected to survive.
We went through a complicated birth, infections, heart and lung trouble (we couldn’t breathe at all when we were born and were in a very poor condition and so we were in the NICU).
We surived the first 9 days of our lives together, until Natalie became an angel.
When I took my first unexpected breath at 2 weeks old, doctors didn’t know what to expect, for I’d been through a lot already. I was diagnosed with hydrocephalus, which is known as “water on the brain”. It’s a buildup of cerebrospinal fluid which protects the brain and spine. This builds up excessively inside the brain and skull which causes swelling and brain damage. I was diagnosed with CP around this time when the doctors saw I had difficulty moving and was very stiff.
For me, CP causes difficulties with all daily tasks and I require help from others. Find general information about CP here: https://www.scope.org.uk
I have difficulty with concentration, relaxation eating and drinking, swallowing properly, general mobility and positioning, sleeping, spatial awareness and vision as well as stamina, general coordination, grip ability and strength. I have a limited range of motion and have daily pain and spasms and seizures.
I have Spastic Quadriplegia Cerebral Palsy with Hydrocephalus and all this means my muscles are too tight all over my body as well as my trunk and face. I have a powered wheelchair for mobility and I wear strong high prescription glasses. I am registered blind. I have shunts which drain off the fluid from my brain and these surgeries left a lot of scars.
Here’s more information about hydrocephalus: https://www.shinecharity.org.uk/hydrocephalus/hydrocephalus.
I’ll talk about hydrocephalus more in my H post for my Disability A-Z series on my blog.
I have a speech problem called dysarthria which I have talked about before on here which makes my speech slower and makes me stumble over words and sometimes be hard to understand. It also makes me drool too much.
Sometimes, it’s harder to think of words and I can take time to respond. This makes people think I’m not listening when I really am. Extreme tiredness can make me go very quiet and I easily get headaches from the effort my muscles have to make to move, no matter how small the effort.
My intelligence is unaffected but I have a math-related learning disability This makes anything related to numbers difficult.
I love to blog and email and have many book drafts. I would love to be a published author someday. I am still working on that.
I use assistive technology for computer use. For me, this a voice recognition program which is built into my computer. I have used these programs since I was at primary school and they (as well as the physical help from people) helped a lot in me being able to do homework and get my degree.
I love makeup, fashion and beauty and I can speak Spanish. I am married. I did therapeutic horse riding from age 5-17 and horses, as well as cats, are my favourite animals.
This Cerebral Palsy Day, as well as every day, I want people to see they are original and unique no matter how their disability affecs them. If you have CP and have ever doubted your ability to achieve things, I want to say there are ways to study, to learn or to do adaptive sports or what you want to do. I have been discouraged and still do get discouraged, but I know I have a fighting spirit and all of us with CP do. Whatever you’re going through with your CP (and believe me, it does make life interesting!) you have my support.
Remember to keep being you despite your CP and that you should never stop spreading awareness for CP how you can. I spread awareness through my blog, and through what I do each day. Green is the CP awareness colour and I am wearing green eyeshadow every day this month. I’ll be posting tweets throughout the day, including my CP story, on my Twitter account @theglitzqueen. If you like my content, feel free to follow me there.
Although awareness in a day isn’t nearly enough, I do all I can through my blog to show my life with CP, Hydrocephalus and severe visual impairments. I’m happy to be here to be able to do that. I am more than just a person with CP and my other disabilities. I love books and writing (which I enjoy thanks to assistive technology) fashion beauty and makeup as well as movies. I’m married and speak Spanish.
I’m happy to see interest in my blog and thank each and every one of my followers for your continued support.
The green makeup look I wore today was:
Urban Decay Moondust Shadow in Lightyear from the Urban Decay Moondust Palette (2016).
W7 London Rose Mascara in Black
Shade 08 (dark green) from the Kiko Smart Lipstick Palette Shade Selection # 03.
Byphasse Face Mist with Rosewater and Camomile Extract for Sensitive and Dry Skin (used to refredh skin and fix makeup).
I finished the day off by listening to some memoirs by people with CP on Scribd.
For more information about Cerebral Palsy Day, here’s the CP Day site homepage: