A little bit of common sense is all I need!

November 15, 2014

Apologies that this blog post comes less than a week after the last post, I have a really busy week coming up so I don't think I'll have time to post! Thank you for all of your comments on the last post, I'm glad you found it funny!

 

So, the post title, 'A little bit of common sense is all I need!' ... it's kind of been a running theme throughout my life, and I've found myself saying it all week this week! Now, I need to be careful what I say on here as a hell of a lot of people read this blog (apparently!). So, I am reluctant to tell the scenarios that have happened this week on here - not because I am at all bothered about people knowing, but I don't want the people involved reading it on here if that makes sense?! I don't know why, but in my experiences, so many people don't look at Cerebral Palsy with one ounce of common sense. I was talking to my Mum the other day, and we picked out some things that have happened to me where rather than applying common sense, they followed 'the book' to the letter 'because I have Cerebral Palsy'. Here's some I can particularly remember:

 

- When I was little, I 'had' to where splints (they were so sexy, not!) 'because I had Cerebral Palsy', i.e. every child with Cerebral Palsy wears splints and therefore, Ellie needs to wear them too. Now, I have a really bizarre type of Cerebral Palsy in the fact that if I have too little physical support, I can't manage/walk, but if I have too much physical support, I can't manage/walk either. For example, if you put me in a pair of flipflops or sit me on a bar stool, forget it! But, on the opposite end of the spectrum, put me in special boots and strap me down and put me in a fixed position in an electric wheelchair (tried it some years ago when I was moving to secondary school, absolutely hated it as I couldn't do anything!), forget it too! The splints for me just offered too much support. My Mum and Dad identified this and spoke to the physio time after time, arguing that they saw me with and without them on and I physically functioned better without them! I think at one point, the physio even accused my Mum of 'being in denial' and that she 'was only bothered as I couldn't wear pink, girly shoes', which is totally not the case! My Mum wasn't that superficial - if the splints had made me walk better, she would of course been over the moon no matter what they looked like! After about 2 years, the physio happened to catch me without them on and she had to admit that my parents were right! Common sense won that battle, eventually!

 

 

- Very similar to the splint situation, when I was 11-years-old, I was chosen by the NHS to trial a 'Therasuit' because, yeah you guessed it, 'I had Cerebral Palsy' - this ticked their box and the fact that this scared the you know what out of me and the fact I wanted to start secondary school with some level of dignity didn't bother them! Basically, a Therasuit (or second skin suit) is I suppose a bit like a wetsuit! You wear it under your clothes (good job I'm usually cold!) and it's meant to quite literally hold you up, so as you can imagine, you can't exactly forget about it like you can say your underwear, it was pretty invasive. Just like I explained with the splints, it just offered way too much support and you couldn't even go to the toilet in it - looking back, that is actually quite funny! But at the time, it was pretty horrific especially as I was about to start secondary school! To cut a long story short, not one single medical person was willing to budge an inch when we said 'it's really not for Ellie, she's to active and able'. It wasn't until I walked into a hospital room with it on and burst out crying in front of every medical person involved it was scrapped! ... It's not even like me to cry in front of people!

 

- Last year, I was rushed into hospital (long story! And I've just realised all these stories of having no common sense are medical related!), and I went in by ambulance. The paramedics said I'd at least be in overnight, so this obviously meant finding a space on a ward. I had literally just turned 18 and I was still at school. In the words of the paramedic 'The Children's Ward technically stops at 17, but I think we need to apply common sense here. You've literally just turned 18, a lot of Children's Wards often go up to age 19 anyway, you're still at school, you have Cerebral Palsy so you have extra needs, you can go straight to the ward and concentrate on getting better instead of sitting on a trolley in a corridor and you are familiar with the Children's bit anyway!'. I seriously wanted to adopt him as my new best friend, and any person who can get several needles into a girl who has a severe fear of them and has involuntary movements deserves a 'hero' title! Anyway, to cut a long story short, the doctors at the hospital would not allow me onto the Children's Ward, even though the paramedic was pleading on the floor saying 'Where's your common sense?! She has Cerebral Palsy and literally turned 18 last month!' ... haha! I think everyone would have been happier that night if I had been allowed to be on the Children's Ward, especially my Mum who became very sleep deprived sitting on a wooden chair next to me! Just going off the topic a tad, I read an article the other day, and the headline was something like 'Disabled Teens Let Down When Admitted To Hospital', and it was about being put on Adult Wards and totally not having their needs met, e.g. not being able to have a parent stay with them. After my most recent experience, I totally agree and I really think something needs to be done.

 

- Last example, which happened this week. The wheelchair people who supplied my wheelchair rung up this week to say they 'needed' to service my wheelchair. I can assure every single one of you that my wheelchair is perfectly fine! For them to service my wheelchair, it would more than likely mean missing a lecture, and all they would do is a 5 minute visual check to tick a box! Common sense would say that I could just say on the phone 'ahh yes, it's fine, brilliant, great....!' My dog even gives it the thumbs up!

 

So, Cerebral Palsy and common sense rarely come together! Believe it or not, we have found that the organisation that applies the most common sense when it comes to Cerebral Palsy/disability is the Parallel Success team at British Athletics! I just hate it when people kind of freak out a bit over Cerebral Palsy and follow everything to the letter! I have learnt that having Cerebral Palsy requires imagination, the ability to think outside of the box and common sense (lots of it!). I have sometimes felt as if some people forget that I am Ellie, and I'm an individual because they're 'just dealing with another case of Cerebral Palsy' - I hope I'm wrong, but it is how I feel!

 

Anyway, today, I went to Chatsworth Christmas Market with one of my best friends, and of course, no day would be complete without some sort of 'Cerebral Palsy incident'! So, when we arrived, we flashed the disabled blue badge (not only did it get us nearer, we got in for free when there was a £9 charge - definite 'Cerebral Palsy perk'!), and then the carpark man came running after us to 'inspect' the blue badge! My friends reply was 'Mate, if she's been putting a Cerebral Palsy act on for the past 20-years, she's done a ******* good job!', to which I replied 'Is this where I 'come out' and go SURPRISE SURPRISE, I'M ACTUALLY ABLE-BODIED LOOOOOOSERS!' ... Hahaha!

 

And then, we were queuing for mulled wine and my friend asked the man on the stall if he had any straws, as I need a straw to drink. The man replied 'No? Why do you want a straw for that? It'll melt!', to which my friend replied, 'Ellie has years of experience of drinking every single drink out of a straw and we've not seen a single straw melt yet!'. I was laughing so much! My friend was horrified by his rudeness though!

 

The mulled wine, minus the straw!

 

This week we have guest blogger, Mel Barber, who is a CP Teens UK Ambassador! Thank you Mel!

 

 

Just thought I would introduce myself, as this is my first guest blog as an ambassador for CP Teens UK! My name is Mel Barber, I am a 19-year-old student from Stockport and my form of Cerebral Palsy is Diplegia, meaning both of my legs are affected. 

 

At the moment it is quite a busy time as deadlines for Uni are one after the other and being in 2nd year the work actually counts so it’s quite a scary prospect! Despite this I can still make time for plenty of live gigs and going out which can sometimes feel like an endurance test, by the end of the night my feet burn and it can be incredibly painful, it’s still worth it though! I like to consider myself quite an independent person, being able to drive and get myself to my part time job etc. It was only once I began university last year that I had to give up some of my pride and actually accept the help of personal assistants to carry my bags, hold doors open and provide an arm to link when I walk. Although at first it can be strange having someone unfamiliar around, they blend into the mass of people around campus and you are soon relieved that they are there to help you out with the ‘little things’.  

 

From living in halls last year, I moved back home, as I am only a short distance away from Manchester so it is easy enough for me to commute having an adapted Motability car. Another reason for me living at home is that a major challenge is coming up in my life next year! In January I am moving to Rotterdam in the Netherlands to study abroad as part of my degree, I could not be more excited to move over there and the university over there has been great in reassuring me that all the relevant support will be put in place. Surprisingly they told me I would be the first disabled exchange student they had ever received which I think makes them more anxious to get things right. I am not complaining! A member of staff is even going around the campus in a wheelchair to note down all the things they have difficulty with before my arrival. This will be a new chapter in my life and bring a whole new meaning to ‘independence’ but I am more than ready to take it on!

 

Recently, I have changed Physio from private back to NHS funded again. I’m sure I’m not alone in this, me and physio have a love hate relationship and even though it’s a necessary part of having CP we all know that as young people we have more interesting things we would rather be doing that boring exercises! From moving into adult services, I did have a short break as I found it difficult to adapt to making my own appointments and committing to getting there by myself after so many years of having those things done for me. But now that I have begun to understand my body and the dodgy things it does a lot more and I made the decision to get back into it! At first under a private physio, it was great but to be honest paying £35 every two weeks for a student was becoming a bit pricy! My doctor couldn’t have been anymore efficient in referring me to a local NHS funded physio that is going brilliantly. He is keen to give me an intense program before I swan off for 6 months! 

 

I tweeted a couple of days ago about my new splints that I had made, they are surprisingly comfortable considering I haven’t broke them in much… More importantly, they are BLACK! Which means they match with my leggings and jeans and don’t stand out as much as the horrific white ones I have been given my entire life! They simply look like knee high boots[Symbol] it does baffle me how no one told me I could get black splints before, but this is all part of growing older with CP and being aware of making your own decisions without your parents and knowing the different options that are available to you. I’ve found recently that I am the one asking questions now, even to the point where my Physio felt like he was in a exam during my last session! 

 

I just wanted to put this out there as I am not sure if this is something other people with CP experience, but now that winter is approaching and its getting colder my circulation is becoming terrible! My legs and feet are freezing constantly, I feel like an old woman with the amount of thermal pieces of clothing and heat generating appliances I have! None seem to do the trick completely, but maybe it is down to the lack of flexibility I have, especially in my right foot. (sorry for the boring topic!) 

 

I am going to finish by saying thank you to Ellie for giving me the opportunity to write this blog!

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