'but you don't look sick'

this is something i have heard A LOT recently, i am aware that i don't look sick, that i look just like any other 23 year old but that's the thing with INVISIBLE illnesses, the clue is in the name, you can't see it from the outside, but let me tell you i definitely feel it on the inside.

i'm also fed up of people telling me it's all in my head, you wouldn't be saying that if you woke up feeling dizzy, or if you couldn't feel your leg, i get that most people don't get it, and that's fine, but please don't belittle me and tell me i'm imagining it, because believe me i wish i was.

i found this description on facebook  and thought it was pretty accurate, i don't suffer from all of these symptoms and they aren't there 100% of the time, but the joys of Multiple Sclerosis is that you don't know when a symptom is going to hit and how long it's going to last.

now that i have had my rant i will go to something more positive...

I AM ALMOST 7 MONTHS RELAPSE FREE!!

this is a massive deal for me, since getting my diagnosis almost 2 years ago the longest i have been relapse free is 7 months, i am so close to beating that so i am feeling positive. :D

since i last posted i have also been discharged from my neuro physiotherapist this was daunting for me at first, but i have now realised that it is a good thing, i have been given a number to ring if i ever need to get in touch again but he said that he'd done all he could for me and that he could see improvements and i just needed to keep at it :)

sorry....

firstly let me apologize, i know i said i would be better at blogging this year and 7 weeks in i am still yet to post, but hey i guess things are better late than never right?

the first few weeks of 2014 have been very strange for me, i have found myself at opposite ends of the spectrum emotionally, i am seriously like a yoyo at the minute & there hasn't even been any explanation for it which is making is making it harder for me to handle.

I am now an honorary Auntie, my best friend gave birth to a beautiful baby boy on the 06.01.14, his name is Joey Christopher Brown and he weighed 6lb 14oz, at just over a month old he already had his Auntie Treece wrapped round his little finger, but I'm okay with that ;)

one of  my highest moments so far this year was my birthday present from my dad, he bought me tickets to go and see James Arthur, now for anyone who knows me personally or follows me on instagram will know that i am OBSESSED with this man, like seriously, i just love him. I will do a separate blog post on that, I have videos :)

the 31st January marked 2 years since my MS symptoms started, and thinking about it this may have been one of the reasons I have been so miserable and down, as much as I try to forget, certain dates stick in my head, and it is ALWAYS for a negative reason, i never remember the important dates like birthdays! but never mind, i think my brain was reliving all the traumatic experiences from 2 years ago so i have been down right, spending my life in my bedroom, not talking to anyone and randomly crying. 

BUT...

the 4th Feb marked a whole year since i started treatment for my MS, and that has put me in a more positive mood, at 3 injections a week for 52 weeks, that marked 156 INJECTIONS  and for someone who has always been terrified of needles and injections I think that this a massive achievement, that day was made even better when i got a text off one of my best friends saying 'so proud of you for getting through your first year of MS treatment Patrice, well done!'  it really is the little things that make your day.. 

we bought new batteries for my mobility scooter today too, so hopefully I will be able to use it without having to rely on my dad to rescue me cos i've run out of power lol, but i will keep you posted on that!

2013

I know i have been pretty shitty with blogging in 2013, i will try my best to be better this year.

But before i start, i feel like i should draw a line under 2013 so this blog post will be doing exactly that.

2013 was a big year. A lot happened although it feels like it was quite uneventful at the same time..

I remember i was supposed to start the treatment for MS on the 21st January, which was also my 22nd birthday, the timing wasn't brilliant but i worked on the basis hat the sooner i started it the better, the 21st January came and i was worried because it was all new to me and i hate needles, but it had been  snowing and the nurse couldn't get to me, so it was rescheduled for the 4th Feb, which meant i could enjoy my birthday :)

i started my treatment on 4th Feb as planned and it wasn't half as bad as i thought it was going to be, this was also the day i started my new job. so it was a big day for me, i definitely slept well that night lol.

i really thought i had landed on my feet with my new job, it was a little bit boring because no-one ever spoke so i spent the day in silence but they seemed to be understanding about my situation, an they even gave e a walking frame to help me cross the site so that i could do my job properly. they were aware of the fact that i had MS and said they would deal with  it as and when they needed too. i was actually going through a relapse when i started but i managed & that seemed to be enough for them. But then 2 weeks before my contract was due to be renewed (we'd spoke about it and it was definitely being renewed) i had a relapse, and this was my worst one yet, the severity of i coupled with my Cerebral Palsy left me practically bedridden so i rang them to let them know what was going on and i was told that they were no longer in a position to renew my contract so they wouldn't be seeing me again! - that was the last thing i needed to hear when trying to recover from a relapse, but i saw it as a blessing in disguise because i wasn't really happy. I guess my MS wasn't a problem whilst it was dormant but the reality is that it scared them off.

i bought myself  mobility scooter to give myself some more freedom & take some slack off dad, it turned out to be a complete waste of money, the battery life is rubbish so i can only use it for really short distances. Dad still prefers to take me everywhere because he was having to come and rescue me when the battery died anyway!

nothing much happened with the rest of the year until October when we got told that my nanna had taken a turn for the worse, she was diagnosed with terminal lung cancer in Feb 2012 and they thought she was in the final stages now, me and my nanna have never had the typical relationship that you are supposed to have with your grandparent, but that didn't make hearing the new any easier, i went to see her at least once or twice a week just so she knew i was there, seeing her so frail and unable to even feed herself or go to the toilet on her own was hard, but i didn't cry in front of her, she knew how upset everybody was, she didn't need to see it too. my nanna lost her fight on the 3rd December 2013 at the age of 67. the whole family was devastated but also relived because it meant her suffering had ended,  RIP Nanna, i love you <3

i got a new job on the 18th December, working as a personal assistant for my step brother, (they won't call me a carer because i don't have the qualifications.) he is 19 and autistic, he has also recently been diagnosed with psychosis and is having a tough time with it. it's not an easy job but is so much more rewarding than just sitting behind  desk.

well that was my 2013 in a nutshell and  this blog post was a lot longer than i was intending it to be!

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...