People who know me will know that I am always tired! Honestly, I'll wake up after a 12 hour sleep and I'll just want to roll back over and go back to sleep. People who don't know much about me or Cerebral Palsy just think I am an extremely lazy teenager. I even forget the reasoning behind my tiredness at times and I do have to stop and tell myself, 'Ellie, you use 3 times as much energy than an able-bodied person!'. If we ever go on a walk or something, which is not often as I complain too much, I'm always like 'why does nobody else want a nap?!'. I'll never forget, when I was doing my Health & Social Care A Level, we were discussing tiredness and stuff, and my teacher explained with so much knowledge (very embarrassing at the time!), why I was tired the majority of the time; she was saying how everybody just does things like walking, talking, picking up objects etc. all the time without even thinking about it, but I have to really concentrate and think about what I am doing, and also, even when I'm sitting 'still', I'm really not sitting still at all as that's just the type of CP I have - Miss Wigglebum CP!
At the time, I didn't even think about what she was saying, I was too busy trying not to tell her to 'shut up, you're really embarrassing me'! But, looking back, I am really impressed about her knowledge on my CP and tiredness, especially as I struggle to get my head around it at times and I am pretty sure that some teachers were like, 'yeah, whatever, you're just trying to get out of homework!' ... which I really wasn't (apart from Maths!)!
Throughout my GCSE's, and especially my A-Levels, I used to come home from school and before I did anything, I had a 3-4 hour nap! It was so hard to balance work with sleep. The two options were either:
a) Sleep and get through the week feeling half-human at least, but get more and more behind with homework, revision etc.
b) Do my homework, revision etc. but feel horrendous and ill.
I couldn't win! And, obviously, the teachers only saw me in their individual lessons, they didn't see me going home and virtually dying in my bed each evening! Of course, whenever I told them 'I'm tiredddddd!', they just thought I was being a typical teenager, and I don't blame them. Also, because of my appalling hand function that I was graced with, I work ten times slower than an able-bodied student, so it wasn't exactly like time was on my side for a sleep! I'll never forget the school's exam officer who saw my revision notes that I made, pages and pages of notes and pictures, diagrams etc. from my original class notes, and she knew how slowly I worked as she arranged my extra time for exams, and she was astounded; no one else did it! It kind of made me angry when people told me that they hadn't revised or made notes or anything as without sounding too big headed, I did use to think, well if I can find the time, energy and willpower to do it, why can't you? But, then again, it was their exam, their grade, their qualification and ultimately their future, not mine. I did what I did as I wanted the grade, and if that meant hours of typing and feeling ridiculously tired, then so be it; at the end of the day, my disability wasn't temporally going to go away just because I had an exam!
Tiredness is a 'side-effect' of Cerebral Palsy as stated by NHS Choices, whether everyone with CP experiences tiredness, I don't know? I'd be really interested to hear from all of you whether you experience tiredness and how extreme (or not, as the case may be) it is. However, according to NHS Choices, as I am experiencing tiredness, I have 'post-impairment syndrome' ... hey?! Okay then!
I'm very inquisitive about Cerebral Palsy and although I obviously do know a lot about it, I do find myself googling it. You know that saying 'never google anything as you get an instant death sentence'?! Well, I even virtually get a death sentence when I google 'Cerebral Palsy'! Cheers Google!
My understanding of having Cerebral Palsy is that CP is most certainly not going to kill you (so, be happy!), it is if you're unfortunate enough to have other conditions/medical/health problems that sometimes occur along with CP that you may have issues. Also, CP can make you more susceptible to things and can make illnesses worse and make them escalate (little disclaimer, this is all personal experience - I am not a medical professional!) I have certainly found this, for example, when I have a cold, I can't balance or walk to save my life! I am more sensitive to pain, so something like ear ache, I virtually want to cut my ear off! Something like a stomach bug, I struggle to control it, so could end up as a hospital admission, but that's only happened once in my 19 years, so not too dramatic! Also, my immune system is rubbish because of my CP, I sound like a professional ill person! I'd be really, really interested to hear your experiences! Touch wood, apart from the odd dramatic 'oh my' moment, I've not been too bad and I'm very lucky, especially when I am so sad to see every week, some people I follow with CP on Twitter seem to virtually live in hospital!
On Tuesday, I met Laura (for those of you who have forgot, Laura contacted me through CP Teens UK, we met up back in November, and the rest as they say is history!) for a Starbucks, as you do! Obviously with us both having Cerebral Palsy, CP is quite often in our conversations, which as bizarre as it sounds, I love as I never actually really do have a conversation with anybody about it! We were saying how diverse CP is as a condition. For starters, there are 4 different kinds of CP all ranging from mild to severe. I have mild to moderate Athetoid CP and I don't know what Laura's actual 'title' is (Laura, you need to tell me!), but in some ways we are so alike, but in others, we could have totally different disabilities. I won't list everything otherwise we'll be here all day, but me & Laura stand in the exact same way (twins?! Haha), and we walk similarly (tiptoes all the way!), but although Laura does struggle with her hand function, Laura can do things like handle money, pour drinks etc. without assistance (are you agreeing with this Laura?!), whereas I haven't got a prayer! My speech is affected, but Laura's isn't. However, Laura's eyesight is effected, but I have 'perfect' vision, apparently! ... Laura, please say you're agreeing with all of this and I'm not offending you!
Similarly, my other Rebecca who also has CP, is affected differently too. Rebecca's hand function is pretty much perfect, but finds walking more difficult. Isn't Cerebral Palsy weird?!
This post is now getting too long, especially as this week, I have a guest blogger! This week, I am pleased to introduce you to Nicola Golding, who is 23-years-old and has Cerebral Palsy (that was a surprise, I know!). Thank you very, very much Nicola and I hope everyone likes her guest blog for CP Teens UK!
My name is Nic, I’m 23 and I have Cerebral Palsy which effects my legs and I also have some difficulties using my left arm and my left hand. Like Ellie, I also blog about living my life with CP.
I have days where things ache, and there are some things that I can’t do for myself, (yet), but there are things about having CP that I would say have impacted on my life in a good way. I try to focus on those parts as much as I can because I wouldn’t change my disability.
One of the things that I like to think of as a positive impact that Cerebral Palsy has had on my life is that I set up my own blog, View From a Walking Frame, and I love writing it.
I’m not suggesting that everyone who has CP, or who knows or cares for someone with CP should keep a blog, but I find that it helps me personally in a lot of ways.
1. I get to interact with lots of people
Thanks to my disability I’ve been able to meet loads of really nice people in my life that I probably wouldn’t have ever met otherwise. I mean the physios, the security guard who used to help me carry my shopping basket around the supermarket when I moved away to university, and the people who help me on and off the trains with ramps, plus so many more. I may not always get to know these people, or even know their names, but many of them are nice and we will sometimes get to have a chat while they’re helping me out.
Blogging about CP has helped me connect with lots of new people, and that is by far my favourite part of the whole process. I love talking to the people who read it, and it’s helped me get an understanding of how Cerebral Palsy effects different people, and I’ve also been given lots of ideas for ways that I could do things I find hard.
2. It helps me keep track of my achievements
I often find that I lose sight of my own achievements sometimes, or I don’t really realise how much I’ve improved over a certain time period. I think that my blog helps me keep track of that, and helps to boost my morale if I’m trying to reach a point where I can do something that I previously couldn’t.
3. It helps me stay motivated
It also helps me to stay motivated when it comes to things like doing my physio. While I’m the first to admit that I don’t do it as often as I should, I feel like I have to write a post about why I’ve been so de-motivated if I go through a stage where I notice myself slipping a bit. I hate having to do that.
4. I use it to set goals
Just recently I’ve been publicly setting myself mini challenges to do things for myself that I haven’t been able to before. If I were just to sit in my room at home and tell myself that that’s what I was going to do, I probably wouldn’t push myself as hard. These challenges aren’t big ones, but they all help in their own way. If I don’t manage them, then it won’t be too big of a deal, but it will be nice to try anyway.
I know that not everyone finds it easy to talk about things like Cerebral Palsy and so I know that blogging about it might not be right for everyone, but I really do enjoy writing my own, and reading those that are written by others.'