Living with a disability

[Fractral]

myalgic encephalomyelitis
more commonly known as chronic fatigue syndrome, but that's the misnomer of the fucking century

it's a multi-systemic condition generally defined, obviously, by consistent fatigue not alleviated by rest and accompanied by several other specific symptoms such as post-exertional malaise, widespread joint and muscle pain, constant severe headaches, mental and physical fatigue, cognitive dysfunction, and much more.
the way it hits you is like a fingerprint, the laundry list of symptoms switches ever so slightly from person to person with varying degrees of severity. some people have headaches that render them half blind and others just deal with a persistent dull ache. some sufferers might complain of night sweats or a chronic cough or something and others wouldn't. there's no specific test for it so to be diagnosed you pretty much just go through a process of elimination and hope your doc actually believes the shit exists
oh yeah by the way some doctors don't believe it properly exists, particularly in the uk. it's considered to be a psychiatric condition, like it's all in the head. so there's that

Its a real shame how little people know about that condition. Last I heard, no-one knew how it starts, why it starts, or why it does what it does. My sister was diagnosed with it about 4 years ago when she was 14, and it wouldn't be an understatement to say it ruined her life. She all but dropped out of school due to being unable to attend, and only managed 6 GCSE's, which she had to take at home, and then managed about a week of 6th form before dropping out of that. She spent the next two years sitting at home all day being bored out of her mind, in pain, unable to sleep, depressed, and a whole load of other stuff. And no doctor could tell her why.
Hers isn't the worst case I've heard of- we had a neighbour who was literally unable to move on bad days, and had to be fed by her husband. Even on her best days she was incapable of getting out of bed.

 

[Zero47]

I have Aspergers Syndrome. It has had a major impact on my life, personal issues that would've been hard for any growing teen to deal with became impassible barriers because of my AS. I bloody hate it.

 

[Monkfish Acc.]

myalgic encephalomyelitis
more commonly known as chronic fatigue syndrome, but that's the misnomer of the fucking century

it's a multi-systemic condition generally defined, obviously, by consistent fatigue not alleviated by rest and accompanied by several other specific symptoms such as post-exertional malaise, widespread joint and muscle pain, constant severe headaches, mental and physical fatigue, cognitive dysfunction, and much more.
the way it hits you is like a fingerprint, the laundry list of symptoms switches ever so slightly from person to person with varying degrees of severity. some people have headaches that render them half blind and others just deal with a persistent dull ache. some sufferers might complain of night sweats or a chronic cough or something and others wouldn't. there's no specific test for it so to be diagnosed you pretty much just go through a process of elimination and hope your doc actually believes the shit exists
oh yeah by the way some doctors don't believe it properly exists, particularly in the uk. it's considered to be a psychiatric condition, like it's all in the head. so there's that

Its a real shame how little people know about that condition. Last I heard, no-one knew how it starts, why it starts, or why it does what it does. My sister was diagnosed with it about 4 years ago when she was 14, and it wouldn't be an understatement to say it ruined her life. She all but dropped out of school due to being unable to attend, and only managed 6 GCSE's, which she had to take at home, and then managed about a week of 6th form before dropping out of that. She spent the next two years sitting at home all day being bored out of her mind, in pain, unable to sleep, depressed, and a whole load of other stuff. And no doctor could tell her why.
Hers isn't the worst case I've heard of- we had a neighbour who was literally unable to move on bad days, and had to be fed by her husband. Even on her best days she was incapable of getting out of bed.

yeah, it has a habit of ruining your fucking life
i was eleven when it hit me. i managed to finish primary school before being floored by the first three weeks of secondary. never really finished school and spent my entire adolescence in a bed, and i consider myself one of the lucky ones

if my mother didn't have it, we'd have never even considered it. mostly because we wouldn't even fucking know about it. it's an invisible illness in more ways than one

i hope everything works out for your sister. this is a fucking awful way to live

y'know, not to sound whiny or anything, aside from the constant agony and the decimated future shit is working out pretty cash for me

 

[Something Amyss]

If we're counting mental disabilities, the list could get pretty long.

To be concise, OCD, dyslexia, ADHD, General Anxiety Disorder, migraines (severe ones), hypersensitivity (no cool Daredevil powers, though), a nerve disorder where my hands copy one another (at the very least, typing's a *****) Dizzy spells which may or may not be related to the migraines, and restless spleen syndrome (okay, that's made up).

I know plenty of people who say they have A.D.D because they get distracted easily, but can concentrate fine when they need to.

You know, that doesn't exactly preclude ADHD.

I have only one testicle does that count? It serverly hinders my self confidence , especially with women i want to sleep with .

Hitler had one testicle, and look what he accomplished.

...Not that you should try to emulate him or anything.

In terms of disabilities mine is a bit of a list, I have Hypoglycemia (Low blood sugar) OCD (Obsessive compulsive disorder), GAD (Generalized anxiety disorder), Epilepsy, MS (Multiple sclerosis), Bipolar disorder, and last but not least, Brain damage. Although I'm 95% recovered from the brain damage it still causes a lot of issues such as the Obsessive compulsive, Anxiety, and Bipolar Disorder which is why meds probably won't work (for the bipolar). I have a 125 I.Q. and I can't use it. Ain't that a pisser.

MS? My sympathies. My mom has MS and it runs in my family so a few other family members do.

 

[Marcus Kehoe]

I have dysgrphia which is just a kinda specific case dyslexia where all my communication skills as hampered. I have a speech impediment my writing is terrible and I generally have a hard time with languages. Reading is also an issue, I usually forget 60% of what I read.

It's not as bad as it used to be due to speech classes and help as in grade school but It's still very evident in my life.

 

[SirNerd]

Getting the 28 warts from my hands cryogenically removed (liquid nitrogen) over the course of two years left me with several oddities. It happened when i was 8 and they started with my right hand, and I lost the use of it. This is the time where you learn how to actually write, and because of that, my writing is downright chicken scratch. Because of this, I became ambidextrous and can do anything but write with both hands to pick up the slack when they were focusing on removing warts on a certain hand. The process also deadened the nerves in my hands, I don't feel things as well nor do I feel pain. This is handy in boxing.

On the downside, other than the crap handwriting, I also have had the shakes in my hands since I was 10. This is a combination of inheriting it from my father and from the wart treatment. When I'm not tired or exhausted, it's very slight tremble, when I get tired, it looks really bad.

I'm also near sighted, have busted cartilage in my left knee (kickboxing) and a bad left shoulder (Judo). I'm 20 with the hands like my Parkinson's ridden grandad.

 

[Karthesios]

Living with cystic fibrosis (if you're not born with it, you won't get it) is all kinds of not fun. I'll leave it up to you guys to wikipedia it, but I can sum it up with diminished lung function and having to take enzymes before I eat anything, lest I not absorb its content properly.

As I type this, I'm taking a dose of an inhaled antibiotic which I take in four-week cycles (four weeks on, four weeks off). Fortunately, tomorrow is the last day of the "on" cycle.

 

[Sangreal Gothcraft]

I have ADHD and i must say, it enhanced my sex life..Not really i just need to focus a lot harder than usual. I don't think it is disability...more like Ride to free meds, which i do not take. I don't like to be Doped up.

 

[deadish]

OCD. My god it's annoying. Concentrating can at times be a herculean task. The discomfort and anxiety.

Social phobia. Used to be bad enough that I can't leave the house. It's better now, although I still feel uncomfortable with people in general.

 

[Klumpfot]

Ooh, I have something unique (so far); a clotting disorder!

The symptom is called thrombocytopathy, but there is no established cause yet. What it means is that it takes a considerably longer time for my blood to clot, because my platelets don't glue together as effectively as they should. What this means in practice is that I am not hindered at all in day-to-day life, but injuries can be considerably more dangerous because I lose more blood than I should. So, not really noticable until it is potentially fatal.

 

[Blood Brain Barrier]

Epilepsy. I don't care if you call it a disability or not, but it sucks when you're dazed and confused for the next two days and can't really do anything, and have piercing headaches for at least 6 hours after a seizure not mentioning any injuries that are sustained. Pills are unfortunately the only relief, and they completely drain you of your personality and will. Trying to find and experiment with alternative treatments at the moment - some are looking hopeful.

 

[Zeles]

I have OCD and ADD. The ADD I can control, so long as I take my meds. The OCD on the other hand...

OCD manifests itself in a bunch of different ways. Each person's is unique. So while one person might feel the need to keep everything clean, another might need to do something a certain number of times. For me, it manifests as movements. Sometimes, when I move (Get into bed, drink water, close a door, write, etc.) it wont feel right. I'll want to do it again so I can fix it, but most of the time THAT motion doesn't feel right either, so I'll do it again. And again. And again.

It's always there. I can't get away from it. When I read, I'll feel the need to move my eyes back over the words and reread them. When I play games, sometimes when I select something I'll feel like I have to reselect it. And even when I'm just watching a video online, if I hear an odd sound coming from the video I'll go back a few seconds and see if it pops up again. Then I'll go back again. And again. And again...

It's really distressing, because I KNOW that there's no reason for me to feel like I need to repeat actions. I KNOW that nothing bad will happen if I don't go back and get another drink of water. But it feels like I HAVE to. It's like having a mosquito bite, and trying not to scratch at it, only worse.

 

[Zeles]

OCD. My god it's annoying. Concentrating can at times be a herculean task. The discomfort and anxiety.

Social phobia. Used to be bad enough that I can't leave the house. It's better now, although I still feel uncomfortable with people in general.

I hear you. What makes it so much harder is that one of the best ways to get better at it, is to purposefully trigger it and NOT do the compulsion.

 

[launchpadmcqwak]

I have somwhat severe Dyspraxia, i cant structure writing too save my life and my handwriting is god awfull, i get bad grades but it kind of encourages me to pursue my dream of becoming a professional musician.

 

[Bat Vader]

Can I ask what may come across as a very callous and horrific question?

Spoiler: Potentially offensive question

Spoiler: It is about procreation and genetic disabilities. You have been warned.

So, if you have a disability which is genetic, or just have a laundry list of bad luck as far as disabilities is concerned, would/will you reproduce?

For example, I plan on being screened when it comes time for me to procreate because there's some things which won't present in either parent but can potentially make a childs life harder.

While I really, really, really like the idea of having children that are biologically my own, I don't think I'd want to bring someone into this life if I know they're likely to have a shitty time of it.

I'm not suggesting that having a disability ruins your life, but it can add certain barriers for you; and I think it would upset me to think of placing my child in that position. That said, if you've managed ok, who's to say your child can't too, right?

I just think that when there's so many children who need a home, it seems somewhat cruel to bring a child who will be disadvantaged from the get go, when you can give a loving family to an existing child.

I'm also well aware of the whole "Well why not just adopt anyway?" point. As I said, I really like the idea of a "little me", and I don't think I'd want to make any decisions about the number of children I care for until I see how I do with one.

This has always been one of the three major things that has stopped me from wanting to be a father. If my child was to be diagnosed with Rheumatoid Arthritis I would feel really bad that I gave my child a harder life.

 

[James Joseph Emerald]

Amputees seem to be able to run in the olympics. Better get rid of those parking places.

That is the finest straw man argument I've ever seen.
Truly, I am in the presence of a master debater and so must concede defeat immediately lest I be soundly trounced.

Supposed to be more tongue in cheek than a proper argument. I wasn't trying to incite bad feelings or "win" an argument.

You were trying to undermine my point by implying my logic was flawed, by twisting the meaning of what I said SO MUCH it has left me astounded.
I hope you bought Credibility dinner at least before doing what you did to it.

 

[Phasmal]

Well, I've got less hearing than most people.
I can function without a hearing aid so I'm not disabled. Just a bit cloth-eared. And I have balance problems cause of the ear thing.

My mother, me and my nan all have hearing problems, but for all different reasons.
I guess ears in this family are just weak.

Also depression runs in my family, but it hasn't gotten me yet.

 

[deathninja]

ASD, and I got diagnosed really late (21) which threw me massively for a few years.

I've got my head around it now, and generally I have a good feel for my limits and work within that. Occasionally I do have the anxiety/panic attacks and other issues, but I have a decent department here who are willing to give me space or support as needed.

The thing that I really struggle with (to the point I wish the doctor had never picked it up) is trying to find a job; since diagnosis I've applied for 50 or so, all have turned me down specifically because of my disability, I can't even volunteer for a charity. I've pried a bit at careers fairs on campus asking for a "friend" and responses range from not outright hatred to only wanting to employ disabled people in wheelchairs because it's PR then.

That's why I'm terrified of graduation, to the point where I'll probably kill myself if I can't land a PhD or research project.

 

[DANEgerous]

I am both dyslexic and dysgraphic meaning my writing is so pour after a few lines even i can not read it. I could never take notes and more ore less never learned to spell very well as spelling tests tend to end in about the 6th grade and if I use a computer it has spell check. This also means a more ore less auto-failed math even with correct answers you MUST show your work it counts as 80% of your grade on average even if you get every answer right you get a 20 yippee!

The only thing that save me was after high school all that changes sadly except for many math classes. But I the real world no one gives a damn how you do your job as long as you get correct results no matter how much your algebra teacher thinks that is a lie.