A couple of days ago I was waiting for a bus which is something I do on a daily basis, as I stood up to get on said bus a lady asked me what I’d done to my leg ‘I’ve had a stroke’ I replied, lady: ‘sorry what?’ me: ‘I’ve had a stroke’ lady: ‘I’m sorry I really can’t understand what you’re saying’ me: (getting mildly frustrated) ‘I’VE HAD A STROKE’ lady: ‘oh right, did it affect your speech then?’ Me: ‘No it was the otherside of my brain’ What I should have said is ‘Not even slightly, it’s not my fault you felt the need to ask what was ‘wrong’ when actually it doesnt affect you in the slightest and you were so unprepared and ignorant for the answer that it led you to not understand what I was saying’ I know that a lot of people dont realise that young people can have strokes, lord knows I didn’t but seriously if you’re going to bother asking be prepared to hear something you might not expect and if not keep your bleeding nose out!!! At Glastonbury I met loads of people in wheelchairs or using various aids/casts did I ask them what was ‘wrong’ with them? No because it doesn’t change who they are. Rant over.
March 2012
14 posts
I just realised I don’t think I ever blogged about this!!
One of my best friends & jewellery designer, Jordanne, made me a necklace after I was on Live with Gabby which I absolutely loved. She quickly decided that she wanted to sell the necklace to raise money for Different Strokes, The necklace comes in different lengths and comes in Silver or oxidised silver (black), I have been wearing mine constantly since before Christmas, It’s amazing quality and goes with everything! The necklaces cost £15 (+£3 p&p) and £5 from each necklace goes to Different Strokes. In the first month of putting these on sale Jordanne sold 25 necklaces raising £125 for Different Strokes, This month it featured in the Different Strokes newletter with my egypt face gracing the front cover.
Please find the necklaces here
http://www.jordannecliffe.com/#/shop/4559088283/Classic-‘Superstar’-necklace/882532 <—-silver
http://www.jordannecliffe.com/#/shop/4559088283/Black-‘Classic’-Superstar’-necklace/1279745 <—-oxidised silver
and please please please check out the rest of her Jewellery :)
I love you Jordanne, thanks for sticking with me every step of the way!!!!!
Seventy per cent of Britons would not consider having sex with someone who has a physical disability, according to the most recent survey of the nation’s opinions on sex.
http://www.nzherald.co.nz/television/news/article.cfm?c_id=339&objectid=10794580
This makes me think what people think a ‘physical disability’ is? would people class me as physically disabled? or do people automatically think ‘permanantly in wheelchair’? and even so why would this bother someone? I’ve met some incredible (& hot) boys who are in wheelchairs and I know that it wouldnt bother me, although admittedly I’m not too sure if it would have bothered me before hand, although I do remember seeing a boy in a club & thinking he was a mega babe…hmm, I suppose the bonus of this is it sifts out all the narrow minded idiots. I’d welcome any opinions about this.
Theres a new TV show coming to E4 called ‘the undateables’ its about people with mental/physical disabilities or disfigurements. I’m a bit skeptical about it I’m not exactly sure this is a great way of portraying disabilities but is it a show that is going to challenge the prejudice? or are people going to tune in to watch for the ‘lol’ factor from something so sensationalised? It will be an interesting watch for my dissertation anyway
I just realised that it’s a year and 2 days since I was allowed out of hospital to see McFly with megan, if that wasn’t enough to celebrate it also means that it was a year yesterday that I took my first post stroke steps at the princess royal hospital, they were the scariest steps of my life, even scarier than the steps i took towards a plane that i had paid to jump out of!I had no trust in my left leg atall and every step I took felt like another unstable mountain climbed. I should take this moment to point out that I probably only took 3 steps at this particular point but it was enough to set me up for the walking I can do today. Ive said thanks to him a thousand times but I genuinely feel like I could never say it enough, my incredible student Physio Adam supported me every step of the way (literally) and he is still my friend now which is one of the great things to come out of this situation, my professional Physio Jen needs a huge thankyou for assuring my mum that one day I would be walking confidently again, whilst I am still not perfect I am getting there, & of course I couldn’t forget to say thanks to Ed, who sadly wasn’t with me on this momentous day but quickly became my walking companion who I loved with all my heart. He was my walking stick but I loved him like a brother. Ahaha (lambs I hope you’re reading this)
It feels only appropriate to end with a song
I would walk 500 miles and I would walk 500 more just to be the (wo)man who walked a thousand miles just to fall down at your door…
I went for my 6 month review with the cardiologist today for the PFO (hole in heart) clinical trial. I am absolutely devastated because the fit doctor wasnt there (oh god I hope he doesn’t read this) anyway I might pull out now. The point of me actually writing about this is because I am actually really confused. I had a different doctor and nurse assess me so not one of them had seen me at my initial assessment so i’m not entirely sure how they are able to compare my progress to the last time i was in…hmmmm. I also had to have an ECG which I believe monitors your electrical activity of the heart whatever that is. To have this done you have to have sticky pads and wires attached to your chest, arms and hips. Now last time I had this done I’m pretty sure I kept my bra on but this time she insisted that I had to take it off, now after a sneaky peek at where the pads are I am 99% sure that keeping my bra on would not have been an issue, so now i feel moderately violated. Sorry if this is too much information but this is like my diary and I wanted to share that little bit of information with you. haha I know i’ve had my moments over the last year with not having the hole closed but as it stands (touch wood) I am actually quite happy again now, i’m just looking forward to the trials results in 4 years times so I can make a decision on wether i should have it closed or not. I’ll be 26 then errgh.
My friend Nicola just text me to ask if I had seen the new stroke association advert. I havn’t and now I am GAGGING to see it. Apparently it has a baby in it and it’s saying how strokes can happen to anyone.
If anyone has seen it online can you please send me the link? Thankyouuu
Finally for now, I came home this weekend to do one of the interviews for my dissertation and I started talking to my mum about the Mcfly concert I’m going to and how I didn’t know how I would cope with standing all night, she started acting really weird saying ‘I’m sure they could sort you a chair out for being such a big Mcfly fan and acting all strange. Last time I was home I had mentioned that Jessie j was playing in London on the same night and how I was gutted. sounding panicked she had replied ‘but it’s important you go to Mcfly though isn’t it’ strange choice of wording no??
Anyway after acting weird and with my suspiscion rising my friend Emily arrived to be my slave (ha) and my mum said ‘we’ve got something to tell you…you’re meeting McFly’
Turns out my mum is an epic charmer/harasser and manages to get me into a meet and greet before the gig!! I am too excited for words it is ridiculous I can hardly believe it. What am I going to say to them? I want to say thanks for the card that Cheryl at Juice organised for me and which my family say was the first time I really smiled after my stroke, for giving me such a great night out of hospital even though they were oblivious too it (again thanks to juice but this time Ryan) they gave me hope and made me feel like me again, the very next day I took my first post-stroke steps and finally thanks to dougie for letting his friends girlfriend film a video for me which cheered me up throughout the hard times when I first got home. I’ve had tears in my eyes just writing this. Whether I actually get to say any of this I don’t know, so I’m going to force slave Emily to make me tell them. They’ve been in my life since I was like 13, that’s nearly 10 years and i am just too excited for this.
Thanks mum I love you!!!
I’m not sure if I ever posted about my grades for the first part of my dissertation this year? Anyway I got a higher first than last year wahooo I literally couldn’t have been happier!! In my module mediating science and technology I didn’t do that great only getting a 2:2 but I tried my absolute hardest and for the first bits of work since my stroke and the stress I felt at the time I’m just pleased I didn’t fail!!!
Anyway back to dissertation, I am doing a production based dissertation making a documentary ‘challenging the representation of disability on television’ it has been so interesting so far but also very confusing. Like any groups people with disabilities are stereotyped on television but what I’ve found interesting is the people I’ve interviewed different understanding of disability. Dr Paul Darke for example supports the social model which (put simply) believes that people don’t have disabilities but that we are disabled by a society that is built in a way that makes doing things harder for us, we do not have a disability but we are disabled. on the other hand Jessica Kelgren-Heyes who appeared on Britains Missing Top Model feels strongly that she is medically disabled as this is something she had to fight for. She had to fight for the right to be understood as medically disabled and so she is proud of it. I think mostly it comes down to people’s experience and attitude with their own disabilities for example I would suggest that yes whilst I cannot use my left arm or walk properly/very far I am still capable of doing many of the things I did before, if only society was a bit more understanding of that, if there were more one handed items, more understanding of stroke in general and less states.
Another thing that I find interesting at the moment is the debate about euthanasia. If you’ve been watching the news this week a man called Tony who has locked in syndrome following a stroke has been given the right to have his case heard to be allowed to be euthanised when he feels the time is right to end his life as he cannot physically do this himself. I think this is totally fair if it is what he wants and if he has been told there is no chance of recovering, i for one know i wouldnt want to live like that, not being able to move properly or even communicate. Frankly it was challenging enough being in a wheelchair.Also in the news recently was a doctor who said that disabled children should be allowed to be euthanised at birth because they have not yet built ‘morals or emotions’ personally I think this is disgusting, talking about this with dr Darke raises the point that there is around a 95% ‘success’ rate of aborting disabled babies after screening anyway. He then says this is the reason society is so confused, on one hand they are being told ‘kill them all at birth,their life’s aren’t worth living’ and on the other they are saying ‘disabled people should be equal in our society’ they should be allowed to do what we do and when you put it like that there is no wonder there is such a lack of understanding.
I’ve also been looking in to learning how to drive. It’s something I was never really interested in when I was 17 as I was saving to visit my friend in New Zealand and it was one of the best decisions I’ve ever made.
I thought learning to drive with a disability would be relatively easily but how wrong could I be?! As I will need to drive an automatic with a few adaptions, probably a knob on the wheel so I can turn it with one hand and the indicators would need to be on the right hand side I am unable to learn with a ‘normal’ driving school. To learn how to drive then, I would have to go through the motability scheme, a scheme that allows disabled people to ‘rent’ a car by giving up their high rate disability allowance which is generally around £50 a week. Great if you can already drive. If you can’t however it’s quite a different story, you have to give up this allowance to rent the car that you can’t yet drive and will be sat on the drive apart from when you have your lessons perhaps once weekly. Whilst this doesn’t sound bad, I’m pretty sure on top of giving up my DLA, in Brighton I would have to pay for a permit to park the car that I can’t use, I need to have a named driver that lives within 5 miles of me which would be fine if I had family within 5 miles of my family but I would have to rely on my friends to do this favour and I would have to apply for a grant to have driving lessons.
To even qualify for the motability scheme you need at least a year left of your DLA allowance left, which I have (just) there is then no guarantee that I will be granted this again as I am continuously recovering and in that case if I didn’t pass within the year what would I do? & if I was no longer on DLA how would I even afford a car?
Before any of this you have to go to your nearest Assesment centre to find out exactly what adaptions you need, my nearest is in hailsham and god knows where that is!
I then started to question how being able to drive would benefit me? And whilst I can think of one day a week where it would be ideal (when I go to the different strokes exercise group) it is possibly not worth the £50+ a week, especially whilst I’m living in Brighton.
After thinking this over for weeks I’ve decided I only want to learn to drive because it’s a challenge and that realistically I probably won’t need to be able to drive until I have children. So after this massive rant I’ve decided to try to save the money so that in 2 or 3 years I can do the world trip I’ve always planned which makes me smile much more than the thought I’ve driving!!
So I guess I have a fair bit to catch up on. As per. Life seems to get hectic & I forget to write about what I’ve been upto.
A year to the date of my stroke I had a consultants appointment to review my splint and physical state. I’ve been seeing him every 6 weeks since I came out of hospital and FINALLY I don’t have to go back for another 6 months! It’s quite scary that I won’t be checked over as regularly but I know that I am advancing constantly and that I am doing everything right to keep that up and I bet they’ll be a much more significant change over 6 months than hes been seeing every 6 weeks!!
