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How does your disability affect your everyday life?

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    I have a condition called Congenital Nystagmus. This means that my eyes move involuntary and there's no cause for it. (for most people it's caused by another brain problem like epilepsy) To stop my eyes wobbling, I have to tilt my head. This causes neck pain and poor balance/mobility and I'm very clumsy because of this. I also have very little hand-eye co-ordination. I am also unable to read and write that well. I can't read anything unless it's font size 18 and in black or navy on white paper and not joined up. Reading can be very tiring and I'm a a slow reader because of it. I also have problems with telling the difference between certain colours.

    Because I'm young (19 next week) most peoplon't believe me when I say I have something wrong with me. I don't wear eye patches or carry some sort of aid that would say that I have something wrong with me. Because of this, I've been called thick and when I'm out, find it really hard to get assistance from other people. It also means having to sit near the back of the bus, which means I can't see where I need to get off. This means memorising the route.

    I'm unable to drive and have been told that my eye sight will get worse the older I get, but doesn't lead to total blindness.
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    Not much for me.
    I genrally have to work out different ways of doing things, like tying my lases and I'm slightly slower at writing then most other people (Which I can claim extra time for in exams.)
    I have my own coping Strategies and won't give up if its something that other people can do without thought

    I can walk for miles without getting tired, and
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    Mild Dyspraxia. its funny i could read well before i strted school but people were still tying my shoes at 7
    Ah, don't feel silly! I'm 17 and people still do them for me :P

    I have Severe dyspraxia, ASD/PDD-NOS, SID, Tremor, Hypotonia, Inverted femurs, Nut allergy.
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    Cerebral palsy - ******* diaplegia.

    Basically means that I can't walk very far without dying of exhaustion. My leg muscles are also really weak and I've spent most of my life in hospital. I'm not in a wheelchair, I just use a crutch, and on the outside it just seems like I walk a bit funny. But this 'funny walking' has lead to arthritis in my toes, ankles, knees and hips so I'm in pain a lot, too. My balance is also reaaaally bad.

    On the upside, I drive and uni are being really helpful and I'm getting a lot of stuff to help me in September because my handwriting is appallingly slow (but it means my typing's very fast - swings and roundabouts, muchly?) Like, seriously, they're giving me gadgets I didn't even know existed... crazy stuff.

    Apart from that, I'm just your average teenager with a higher than average reading age and a boyfriend, and all that jazz.

    Great - it's censored s p a s t i c. Political correctness gone mad, muchly?!
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    Well I have:
    -Mild dyspraxia: I finally learnt how to tie my laces up when I was 7, but even now I can't tie them up tight, they normally end up coming undone.
    I normally wear pumps nowdays to avoid the problem, unless they are inappropriate for the situation.
    I have rubbish hand eye co-ordination which means I can't play tennis or rounders properly because I can't hit the darned ball! I also had difficulty with zips & buttons, so I was always last out for P.E., swimming in particular was a nightmare, I was always 20mins late to the next lesson. I struggled in D.T because I couldn't thread a needle & I can't cut straight with a pair of sissors. I also can't colour in the lines. I'm generally not too clumsy now, I used to be when I was younger. I sometimes pour some of my drink onto the table instead of into the glass, but I never walk into walls e.c.t now

    Though I'm very proud of the fact I could read when I was 3 & have a higher than average reading age, & that my handwriting was, according to the therapist I saw "the neatest handwriting she had ever seen from someone with dyspraxia" Without meaning to boast, I'm very proud of it, I worked very hard to get it up to the level it is now. If I look back on my work from Reception-yr3 it was so much messier than everyone elses, but since then I've been on the same level.
    Because of the dyspraxia & my spelling being rather bad, [if I think a work looks wrong on here then I google it for the right spelling] I've had several tests for dyslexia, all returning negative.

    Hypertonia, basically my muscles, particularly those in my legs & arms are weaker than they should be making me a slow runner. Thank heavens P.E. is over with I say.

    Cateracts- a misting of the lense, I can see fine short distance [as I post this I'm not wearing any visual aid] but things look blury from a distance. I have to wear glasses in the classroom & to watch TV, and when I'm about 80 I'll probally need an operation to have the cateract removed but nothing more than someone who is just short sighted. Except laser vision wont correct the problem.

    I have a weak bladder, unfortunatley this runs through the family. I stopped bedwetting rather late, from ages 7-10 I had no real problems & then I started having problems again. I need to go to the toilet more than most & I have to get up to use the loo in the night. This means I don't get the full ammount of sleep & having to wake up at 7am five mornings running doesn't help, normally by the end of term [except this one cos I've slept in if I haven't had an exam] I'm falling asleep in class. I actually took a day off school once because I was stupidly tired. I saw the top specialist in the UK but nothing he could do helped So I've just learnt to live with it. I try and control how often I go during the day If I'm at home like today, if I'm out I do always think about the toilet, will/when will I be near one. I always need the loo immediatley after having a drink, especially if its Diet Coke or the like.

    And one final problem, its not exactly a disability, but for some reason unknown to me, I can't stand for long on the same spot without feeling faint. I can go on a walk fine, but if I have to stand on the same spot e.g. when we had the school photograph taken, yr11 went up second, we had to wait for all of yr10-nursery to go up, I started to feel really dizzy by the end. I've never actually fainted though, I've sat down as soon as I could on anything available e.g. stone steps, sandbox, chair.

    But you wouldn't guess any of the above by looking at me & I don't like to think of myself as having disabilties. I hate being singled out & made to feel different, as such I refused extra time in the GCSE exams & am pleased to announce I have finished all 20 of the exams I've had so far. Because having to sit in a hall with only a few other people whilst everyone else had gone home/gone to break/ lunch really didn't appeall to me, even at a loss of 10-15 minutes extra time. I believe I can compare my grades equally with others because of this.
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    Hi all, fairly new on TSR, have been registered for a while but don't really regulate the boards too much...!

    I'm a gap year/resit student with hearing loss. I'm deaf, beyond help, in my left ear and wear a hearing aid in my right ear. I grew up learning to lip read people and as a result It's become a very bad habit, a bit like biting your nails or whatnot!

    As a result I usually need to look at people while they're talking and using the phone is non existent in my life at the moment. It's annoying because my hearing problems stem from a reliance on lip reading rather than a "lack" of hearing, if that makes sense. I can hear things fine, it's not due to a lack of volume, just do to a lack of coherency as a result of depending on lip reading for so many years.

    As a result it does affect life and education a fair bit, listening exams, using the phone (pretty much the primary method of communication in todays society) and understanding people who are not facing me or conversations in large groups. I feel this stunts my ability to socialise a fair bit, I find it hard to keep track and contribute when large groups partake in discussions or conversations...

    But on the whole, I'd say I'm pretty lucky and things could be a lot worse.

    Cheers.
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    my dselxia effects me alot within everday life, i struggle to keep up with converstations i am haveing with people becuase my short term auditry memury is really poor its the eqivlent of a 5years olds.

    reading is also a majer prodlem for me i find it exmtrely differcult to undersrtand anything that i read and i can not follow instructions at all, if a teacher expalins what im doing in a lessen they have to rexplain it to me again in a way i can understand and brake it down in to easy chunks.

    writeing effcects me aswell, as i cant take notes when a teacher dictates so i end up with no notes. my spelling is also extreemerly poor and when i do any writeing i offen cant undetstand what i have written afterwoods.

    i also have a problem when i speek i find it hard to get my words out write, and i stumble and stutter over my words. people offen llauph at me about this and call me stupid.

    copying stuff off the bord can be a big problem, i have to look up at every letter of a word becuase i forget what it says, it can take me 45 minites to copy down a slide of writing on the bord, i have to do this wile others get on with their clsas work. people get stressed at me when i am copying stuff down and they want to move on aswell.


    id say that my disiblity effects me alot, i struggle everyday of my life and epople at school can be really cruel and make fun of me as i am the only persen with dslexia in my classes so people dont really understand and just get annoyed at me when i need things expplained again etc.

    so yeh thats just some of the things that effect me within everyday life with my dslaeixa
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    Here goes.

    I have severe depressive disorder, PSTD and Dissociation disorders all of which are quite distruptive.

    I have no confidence so I find it hard to just be normal with people and stop thinking that they hate me. I get flashbacks because of the PSTD and freeze when I am close to any sexual contact with anyone, this keeps me awake and I never sleep. I get really anxious and think obsessively about everything, my concentration is extremely poor. I self harm and think about suicide all the time. With the dissoication I am never 'present' in what is happening at the time, I can't think - which sounds really werid but I don't know how else to explain it - everything feels completely unreal. Im tired, stressed. I spend most of my time feeling completely worthless.

    I was on a psych ward last year and as a result got kicked out of college. I am quite a bit better than then, just through pushing forward and now I am starting uni in September after doing nothing for a year. I am terrified because I really can't **** it like this time.
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    I was born with a hip and bone condition, I later developed perthes disease when I was 8. This lead to lots of time in hospital when I was younger, I had problems reading (but due to being in hospital alot I got tha hang of it and can read better but i often have to reread the page as i forget what's been written (if that makes sense lol) I had operations to correct my hips and since then I have been plagued by 'attacks' where my bones seem to deform?

    Over the last four - five years my mobility has worsened to the point i cant walk very far, and have to have lots of time off. Im going for tests next week because they dont know what it is.... I also have hypermobilty which gives me pain in my joints and used to be flexible with my legs and back, untill i had my operations.

    This has affected my uni work and I have failed my second year completely, I have dropped out to earn more money and to try and sort out my health issues. I have problems socializing and got bullied by teachers and student when i was at school. They also think i have dyslexia but i need to go for tests.

    I also get very bad depression.
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    (Original post by terri1986)
    This has affected my uni work and I have failed my second year completely, I have dropped out to earn more money and to try and sort out my health issues.
    I hope things work out for you

    Would you mind me asking you about your uni experience? How supportive were they?
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    (Original post by River85)
    I hope things work out for you

    Would you mind me asking you about your uni experience? How supportive were they?
    According to my Conections person at school they're really really helpful.
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    (Original post by SarahhhD)
    According to my Conections person at school they're really really helpful.
    I know how helpful some universities are, I've been at Durham for four years and they couldn't be better. The standard of disability support at university is generally very good. They are bound by law after all and it's in their own interest. A minority still could do with some improment.

    I was just a little concerned as it seemed (and I must emphasise seemed) that terri1986's former uni weren't. Even if she'd failed the year (for a medical reason) then a uni would usually allow the student to repeat (allowing the student to withdraw and have a break for a year or two if needs must). Then again I don't know her situation.
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    (Original post by River85)
    I know how helpful some universities are, I've been at Durham for four years and they couldn't be better. The standard of disability support at university is generally very good. They are bound by law after all and it's in their own interest. A minority still could do with some improment.

    I was just a little concerned as it seemed (and I must emphasise seemed) that terri1986's former uni weren't. Even if she'd failed the year (for a medical reason) then a uni would usually allow the student to repeat (allowing the student to withdraw and have a break for a year or two if needs must). Then again I don't know her situation.
    Ahhh, right.
    Yeah, most universities should let you repeat if it was for a Medical reason.
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    In my experience my uni was not supportive because it was not diagnosed even though I have had a bone disorder since birth and hypermobility which is a registered disability. I felt very much isolated and was made to feel that the pain was in my head but its not (it would of been easier if it was) My student advisor and lecturers were tolerant up to a point but giving me information about how to mitigate essays and exams and extra time they did not offer advice on how to do that.

    I have also not received any information on what my options where, so I dropped out to sort myself out.
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    (Original post by terri1986)
    I have also not received any information on what my options where, so I dropped out to sort myself out.
    :hugs: I hope things work out for you.
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    Thankyou
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    I also suffer from deafness, before April 2007 i was only deaf in my right ear, so managed easily enough with a hearing aid, but i woke up one morning in late April last year to find myself completely deaf.

    I'm still at sixth form, the school have been fantastic, providing Teaching Assistants and all that, but i lost a few friends on the way as i couldn't understand what they were saying, but I'm glad to say was only a few

    Going to university in 09, and i'm rather nervous about my disability, i do have a cochlear implant, but i'm a bit worried this'll slow me down a bit.

    Well, that's my story anyway! sorry for posting on a university thread!
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    (Original post by Titch89)
    I have a condition called Congenital Nystagmus. This means that my eyes move involuntary and there's no cause for it. (for most people it's caused by another brain problem like epilepsy) To stop my eyes wobbling, I have to tilt my head. This causes neck pain and poor balance/mobility and I'm very clumsy because of this. I also have very little hand-eye co-ordination. I am also unable to read and write that well. I can't read anything unless it's font size 18 and in black or navy on white paper and not joined up. Reading can be very tiring and I'm a a slow reader because of it. I also have problems with telling the difference between certain colours.

    Because I'm young (19 next week) most peoplon't believe me when I say I have something wrong with me. I don't wear eye patches or carry some sort of aid that would say that I have something wrong with me. Because of this, I've been called thick and when I'm out, find it really hard to get assistance from other people. It also means having to sit near the back of the bus, which means I can't see where I need to get off. This means memorising the route.

    I'm unable to drive and have been told that my eye sight will get worse the older I get, but doesn't lead to total blindness.
    i have similar problems to you. i have autosomal dominant optical atrophy which means that my optical nerve is crap. i can't see very far, can't drive, have "wobbly" eyes too. my last uni was rubbish at helping me, they didn't do anything, didn't even help me with extra time in written exams. i'm starting at UCL in september and i'm nervous about being able to keep up with my course when i can't see what's going on in class at all

    my eye problem is not visible (well, apart from my glasses) so people think i ignore them on purpose or am stupid because i can't read stuff like menues in mcdonalds, bus/train numbers and stops and stuff like that. i can't tell the difference between colours like blue, black, grey and black that easily and people think i'm a bit thick then. when i watch tv i literally have to sit right in front of it. i never go to the theatre or opera or stuff like that because i can't see their faces so there's not much use in that, is it? but i LOVE going to the cinema - nice huge screen!

    i got knocked over by a car a few weeks ago (i was on my bike) because i didn't see a red light and now i'm afraid to use my bike even though that is my only means of transport my eyes get worse every year and i really should get new glasses each year but they're so expensive so i don't. contact lenses would be best but that's out of my league moneywise... i haven't told my new department about my disability yet so i'm worried how they're going to react when they find out they gave a scholarship to someone who's visually impaired (i can see about 20%).

    but the good thing is: i got into student housing because of my disability even though i would normally not have been eligible for it otherwise, being a postgrad.

    i am in contact with the uni's disability office and am going there as soon as i arrive (i live abroad right now). i hope they can fix me up with something that'll help. i have a laptop right now but it's on loan from the government and i have to give it back in a few weeks :eek:

    ps: i can't read weird coloured fonts - so PLEASE use black!!! (not turqouise or yellow...) :o:
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    At the moment my disability has a huge effect on my everyday life!

    I suffer from severe breathlessness which has not been diagnosed yet which has meant i have been unable to get any help.

    I have lost my independence as i am unable to go out anywhere without someone pushing my wheelchair, i can't cook, i have trouble taking baths and even trouble just getting dressed.

    As i was in hospital during my exams, i've had to take them in the reassessment period which meant i couldn't just sit back and relax over the summer and am now having everyone tell me i should take a year out or intercalate for a year in the hope that they can find out what's going on. Can't afford to take a year out and am not interested in the extra debt from intercalating!

    I'm currently looking into buying an electric wheelchair just so i can continue on my course and regain some of my independence.

    Whenever i'm in my wheelchair going round the city, i always get lots of odd looks along the lines of 'what's she doing in a wheelchair' - you can't judge how disabled someone is by looking at them!

    Oops, that turned into a bit of a rant! Sorry!
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    (Original post by kate0904)
    At the moment my disability has a huge effect on my everyday life!

    I suffer from severe breathlessness which has not been diagnosed yet which has meant i have been unable to get any help.

    I have lost my independence as i am unable to go out anywhere without someone pushing my wheelchair, i can't cook, i have trouble taking baths and even trouble just getting dressed.

    As i was in hospital during my exams, i've had to take them in the reassessment period which meant i couldn't just sit back and relax over the summer and am now having everyone tell me i should take a year out or intercalate for a year in the hope that they can find out what's going on. Can't afford to take a year out and am not interested in the extra debt from intercalating!

    I'm currently looking into buying an electric wheelchair just so i can continue on my course and regain some of my independence.

    Whenever i'm in my wheelchair going round the city, i always get lots of odd looks along the lines of 'what's she doing in a wheelchair' - you can't judge how disabled someone is by looking at them!

    Oops, that turned into a bit of a rant! Sorry!
    I know what that feels like, in different settings though.

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Updated: August 23, 2008
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