World Cerebral Palsy Day 2013

it was world cerebral palsy day on the 2nd October 2013, now I wasn't even aware that Days like this existed  before i started using instagram and following some very inspirational people, whether that be people like me who have cerebral palsy or parents who have children with various forms of Cerebral Palsy.

this blog post is dedicated to a few of those people, mainly the parents because i feel that what they do on a regular basis to help their children achieve their dreams often gets overlooked because rightly or wrongly people are always more focused on the children. 

first up is obviously my dad, good old Gary, I really don't know where i would be without him, he has been there for me through thick and thin no matter what. he has been there to hold my hand through thousands of doctors and hospital appointments. I admire his strength being a single parent 3 young children can't have een easy and the fact that i have special needs would have only made it harder.

He is the one that stayed up with me and explained why i had to go through operations and botox injections and physio and wearing my splints, and looking back it must have been hard for him, i was a subborn little girl, who hated wearing my splints and doing my exercises, i would scream and cry and i was daddys little girl so eventually he gave in i stopped doing physio and stopped wearing my splints because he didn't want to upset me anymore. 

looking back i wish i had acted differently, i wish i'd understood back then how he was only doing it to give me the best chance in life but i guess that's the beauty of hindsight. 

Dad, I am sorry for being a cow at times and making your life hell but thank you for everything you have done and continue to do, i love you so much, Dolly Diamond xxxx

Next we have Amy Hall Shepherd.

I came across this amazing lady on instagram, i don't remember how i found her but i am so glad i did, Amy has 2 beautiful children, one of which (her youngest) has Cerebral Palsy, i have been following Amy for just over a year and in that short time Ailyn has come so far,I love watching her achieve what people seem to think is the impossible, she is one determined little lady and reminds me very much of myself when i was first learning to walk. 

Amys strength and courage when faced with some difficult decisions amazes me, she always put her wants and needs to one side to make sure that both Ailyn and Camden have the best shot at life possible, it is obvious from her instagram photos that she would do anything, give up anything for her children and her family and friends. 

i know we only know each other through social media but  i look up to you am half the mother you are when i have children i know i will be great. 

you can follow Amys Journey here:

 http://ailynrose.blogspot.co.uk

Then we have Gwen Hartley. 

Gwen is another Lady that i follow on Instagram,  she has 3 beautiful Children; Cal, Claire and Lola. 

Claire and Lola have a range of medical problems, one of which is cerebral palsy, but  she doesn't let that slow her family down, she embraces the uniqueness in her children and it is a truly beautiful thing to see. your children are lucky to have you and have the world at their feet because you will NEVER give up on them and that is something that i admire. 

Follow this families amazing journey here http://www.thehartleyhooligans.com/

and then we have Todd Nelson

found on instagram, this mans story really touched me, he  is a single parent to his 8 year old son TJ after he tragically lost his wife.

Single parents get a lot of stick, but single dads have it worse. and being a single parent when your child has special needs is far from easy but it's nice to see that there are some out there. it's clear to see from your innstagram that your son idolizes you, just keep doing what you're doing and TJ will grow up to be an mzing man just like his father. 

follow their story here http://instagram.com/smithsidebar

this is possibly tempting fate...

I feel like i could be tempting fate by posting this but whatever happens happens.

i have been feeling amazing recently, I have been relapse free with my Multiple Sclerosis for almost 6 months which is when i started my job, people told me that working with a disability and an auto-immune disease would do nothing but bad because it would push me too hard, I said from the beginning that they were wrong and that it would do me the world of good... looks like it's true that you should trust your own instincts instead of going on what other people think. 

this time has left me able to just focus on myself instead of having to worry about being ill or having to worry about resting and recovering, and it has helped me put a lot of things into perspective, it's helped me realise who my true friends are and the ones who are just out to gain something from our friendship. 


the longest i have gone without a relapse since being diagnosed is 7 months and i am feeling positive and hopeful that i can beat that! it turns out that choosing to go for the treatment and facing one of my biggest fears has done me some good, don't get me wrong i still dislike having to inject myself but i work on the basis that it is just 3 times a week and takes literally 10 seconds and then it's over.

i used a mobility scooter for the first time properly a few weeks ago and i realised how much easier it made things (once i got the hang of reversing!!) it gave me so much more independence and also meant that we could go round the shopping centre at a normal pace instead of my dad and step-brother having to walk my pace needless to say we got the shopping done a lot quicker and i wasn't  complaining of having hurty feet for days afterwards... so because of this i have decided to buy myself one so now it's just a case of looking for the right one. this might seem like a small decision to most peoplem but if  i'm honest it is one of the biggest decisions i have ever made. i have always felt that if i admitted that i needed the help of a wheelchair or a walking aid then i was admitting defeat and giving up on my legs.

i spoke to two of my best friends to let them know what was going through my head.. one of them said "i will buy you a registration plate for it that says 'Little Lady' (his nickname for me) and the other one said "can i add skulls too it" they really do know how to make the best out of every situation... but this helped me realise that i wasn't giving up on my legs, i was simply adapting to the shit situation that life has put me in and if anyone sees it any other way then they are not worth my time.

needless to say i love my best friends lots and lots.




well i am not sure what else to say now so i will leave this post here...

Multiple sclerosis

Its no secret to anyone that I have Multiple Sclerosis, I have never and will never hide it from anyone because it is part of me, you either accept it or you dont, and if you choose not to it's your problem not mine :-)

But I am sick of people with MS looking for sympathy and wanting people to feel sorry for them, I know I am probably going to get a load of shit for this post and tbh I don't really care, I use instagram a lot, and it had become a huge source of support for me, I have met some amazing people who are always there when I need someone to talk to and those people have helped me through a tough year for which I wil be forever grateful.

But all you have to do is search #multiplesclerosis and instagram opens up a whole new world, some good, and some rubbish because as I said its people looking for sympathy Multiple Sclerosis is what it is, it's life changing I get that, because it's changed my life too, but instead of moaning and complaining about the things you can't do anymore and everything tha tMultiple Sclerosis has taken away from you, take some time to focus on the things that you still have and the things that you can still do. And then when you have realised how much you still have, then you can focus on finding new ways of doing things that you are now finding difficult, adapt and make the best out of a bad situation. 


I have MS but because I have learnt to do the above MS will never have me.

Fucking snow ruins everything

Most of the time the fact that I have cerebral palsy and multiple sclerosis doesn't bother me, I work on the fact that no amout of tears and getting upset or annoyed with it is going to change it so I they my best to make the best out of a bad situation!

For the most part I think I do a pretty good job, I feel that positivity is key, but tonight I am feeling pretty rubbish I had plans to go out with my friend who has just got back from Australia, but of course last night it snowed which means today it's all icy and slippy which means its not safe for me to go out  so instead I am home alone in bed watching Jeremy Kyle!

There isn't really a point to this post but ranting and getting it out makes me feel better!

Here are some ecards that made me smile today...

Diagnosis Day and the Events that led up to it.

I still remember this day like it was yesterday, chances are i will remember it for the rest of my life. 

before we talk about diagnosis day I will take you through the things that led up to it...

on the 28th January 2012 (exactly a week after my 21st birthday) i woke up and had no feeling what so ever in my left leg from my hip down to my foot, it was the weirdest sensation ever, the only thing i can compare it to is constant pins and needles that just never fade or go away. i assumed that it would pass but after 2 days it was still the same.

i went to the doctors who immediately sent me to the hospital, it was 18:30pm so it's fair to say that i knew it was serious and i was absolutely shitting myself!!! anyways, off i went to the hospital, i took dad with me, when we got there i got looked at by a consultant who said i needed to go for an MRI Scan, again i was terrified but i went with it, when the results came the consultant said to me "theres some demylenation, on your nervous system both in your brain and  on your spine, but don't worry we can give you some IV steroids and you should slowly start to get the feeling back in your leg " and he was right, within a week and a half all was back to normal! 

i didn't think about the 'demylenation' and what it could mean again until april when i lost vision in my left eye, this time i wasted no time in going to the hospital and they told me it was related to the demylenation and again they would put me on steroids and it would be okay, but then they mentioned that they would like me to go for a lumbar puncture so that they could investigate further. for those that know me or follow me on instagram you will know that i have a massive phobia of needles and the thought of having a needle shoved in my spine was the worst thing ever but i was just as eager to get to the bottom of what was going on as the doctors were, so i agreed and a date was set.

i went back to the hospital a week later for my lumbar puncture, and it really wasn't half as bad as i was expecting it to be. the neurologist said to me "right Patrice, count to 30 and then i'll start" and by the time i got to 10 he'd finished, it was done! i then had to lie flat on my back for 4 hours to stop any spinal fluid from escaping, and that was difficult for me, because of my Cerebral Palsy my balance is horrific and i have damaged my coccyx from falling over too much so i spent the 4 hours uncomfortable, and the last 2 hours i was laid there thinking "OMG i am going to pee myself" i told the nurse i needed a wee and she said "it#s okay love, we've put a special sheet on the bed, just let it go"  i was mortified, i could not think of anything more embarrassing than wetting the bed at the age of 21 even if i was in a hospital and they thought it was acceptable! needless to say i held it in and when i was allowed to move i literary ran to the loo, dad said he hadn't seen me move so fast in years!

we went home and as much as i tried not to think about it the results of the lumbar puncture were playing on my mind constantly!

and then the letter came i had an appointment with the neurologist to get my results on the 4th May 2012. 

the day arrived and me and dad went to the hospital, i asked him to come in the room with me because i don't like doing anything on my own and he said he was more than happy to come in with me, so we sat there and the conversation went a bit like this...

Neurologist: "well we can safely say that the demylenation is definitely in both your brain and your spine."
me: "oh.. that doesn't sound good..."
Neurologist: "i'd say it was good news, the results of the lumbar puncture show ebouh signs for us to be able to give you a clinical diagnosis of Multiple Sclerosis "

and that was it, he said he was going to refer me to a specialist in Leeds to discuss treatment options, that an appointment would be sent to me through the post and then ushered me out of the room. 

the drive home was silent because neither me or my dad knew what to say to each other, but surprisingly i wasn't upset by the news, i was just happy that it was me and not my dad or one f my brothers because my body was already equipped to deal with something like this, after all I have been disabled all my life and this new diagnosis was just another challenge that life had thrown at me. I was determined to not let it change me or the way i lived my life and i think that almost a year in I am doing a pretty good job.

hello!

this is all new to me, i have had a few people ask me what it's like living with Cerebral Palsy and Multiple Sclerosis at such a 'young' age (I'm 22) and i never know what to say. 

I act like i don't want to tell people because I dont want to bore them with the ins and outs of my life, but if i'm being 100% honest it's because i am scared they will judge me, that i will scare them off because they feel i am too complicated. 

so i have decided to start this blog to give people an idea of what it's like to be me, to live my life.

i will apologise now because the truth is, it wont all be sunshine and rainbows & there will probably be a lot of swearing too, so shoot me.