Physically Disabled in the Playground

[happyturtle]

I've had CFS/ME for about a year and a half now, and my mobility is getting more and more impaired. I'm starting to look at wheelchairs now, and I just got my Blue Badge (UK disabled parking badge) in the mail today.

I guess I was wondering how many other people there are in the playground who have physical impairments of some type. I'm sure I'm not the only one.

Able-bodied people welcome too, of course. :smallsmile:

((I deliberately made the thread about physical disabilities because the challenges are so different. Having your body not work right is a lot different than having your brain not work right. Not harder or easier, just different.))

[Juhn]

*raises hand*

I've had spastic diplegia (http://en.wikipedia.org/wiki/Spastic_diplegia) since birth.

[Groundhog]

Weak knees. Which is pretty tame compared with what you two have. All it does to me is prevent me from climbing stairs, running and riding a bicycle.

[Runestar]

This is what I like about the internet. You realize that whatever problems you may have, you are never alone. :smallsmile:

[Fifty-Eyed Fred]

You also realise, if you happen to be me, that whatever problems you may have, at least you're not disabled. *was born lucky*

It must be tough when presented with stairs, or offered a day of mountain climbing. My sympathies.

[Aidan305]

I also have CFS/ME. Thankfully no wheelchair (though I occasionally have days where I wouldn't mind one).

[Emperor Ing]

When I see these threads, it makes me look like a paragon of healthy living. It's so lonely up here. :smallfrown:

[Lioness]

My sister has mild CFS. We sort of caught it early, and it's getting better.

But, well, I don't really belong in this thread. I have a stuffed knee from doing a couple of dance steps wrong, and my shoulder's a bit weird.

*goes away*

[happyturtle]

Treasure it. :smallsmile: It can all be taken away in an instant, or slowly stripped from you as you age. I wish I had done more wild and crazy things when I was still able to.

The thing I'm finding the most frustrating about being disabled is trying to learn how to be disabled. I'd love something like a dummy's guide, full of tips and tricks and practical advice for how to get around in my day to day life when I don't have a fully functioning body. Instead, I keep finding books about learning to cope with the emotional aspects. :smallyuk:

I don't need that! I sometimes have self-pity days, but I don't want to wallow in that. Yeah, it sucks. It's unfair. But life goes on, you know?

I can walk around the house, though my balance isn't great. Standing or walking for longer than a few minutes will cause me to pay for it later. But the weakest place is my shoulders. I can't do anything that puts any strain on them, like hanging laundry or changing sheets. No heavy lifting. And no lightweight but continuous lifting, like carrying a handbag or wearing a backpack. Anything I want to take with me has to either fit in a waist pack or go into a wheeled case.

I'm really fortunate to have a very supportive family, and to have had disability insurance through my workplace. And I count myself lucky to live in the internet age where I can get almost everything I need delivered to my doorstep, as well as stay connected to the world. I can't imagine how isolated I'd feel without that.

[Serpentine]

I have a finger that has a clicky lumpy thing when I move it and eyes that can't recognise people 'til they're about 5m away, and my boy's weirdly colourblind. That counts, right? :smalltongue:

Hm... Not in the Playground, but one of my cousins had a stroke when he was 4. He's partially paralyzed down one side, bad enough that he needs a special turnythingy on his car's steering wheel. I think it's effected his mental abilities, but not much. Been years since I've seen him (never comes to family thingies. Recent unusual dramas are only gonna make that worse), so he might've improved.
Another cousin has fairly severe Down's syndrome, which included nasty heart problems when he was a baby. But now I think he's pretty physically normal, so it probably wasn't really relevant to bring it up here...

Is weight and fitness management an issue with Chronic Fatigue?

[happyturtle]

Able bodied people are welcome in the thread too, you know. :smalltongue:

[Emperor Ing]

All I can tell you is...Parasailing isn't as fun as you might have been led to believe. :smalltongue:

[Ashen Lilies]

...waist pack...


Any disease or disability that forces you to wear a fanny pack should not exist.
...
I mean, it shouldn't exist anyway, but this is just... cruel. :smalleek:

[Serpentine]

"Fanny" is a funny word, mostly cuz of the whole "differing definitions in different regions" thing.

[happyturtle]

@Kris: Yeah, I know. :smallfrown:

@Serp: Fitness is pretty much non-existent for CFS patients, as exercise actually makes our condition worse. My weight has crept up a bit, but the days when I'm too tired to eat probably even out for the lack of exercise.

[thubby]

asthma.
not really bad on its own, but combined with my allergies, spring is the season my lungs try to jump out of my chest.

[Kobold-Bard]

I've had CFS/ME for about a year and a half now, and my mobility is getting more and more impaired. I'm starting to look at wheelchairs now, and I just got my Blue Badge (UK disabled parking badge) in the mail today.

I guess I was wondering how many other people there are in the playground who have physical impairments of some type. I'm sure I'm not the only one.

My gf has ME too, bordering on severe on the scale the woman gave to us. We are currently going through immense hassle trying to get her benefits sorted because the tests seem to be designed to make stuff hard for CFS sufferers:

eg. one of the tests is "can you walk 30ft unaided?" Well yes she can, but only once and then has to sit down for ages afterwards to recover. But that doesn't matter, she can do it so se gets a cross against that part of her assessment :smallfurious:

Sorry didn't mean to vent, but being (thankfully) un-handicapped myself I never realised how much the system hates disabled people (such as the woman in Cornwall who was denied a blue badge even though she only had 1 leg).

You may already know about it but I offer up Foggy Friends (http://www.foggyfriends.org/) for those with/know someone with CFS, especially those who are feeling lonely because of it. It's helped my gf a lot.

[Eldan]

As a kid I had something-or-other syndrome (I can never remember the name). Basically, a nerve problem which resulted in just one weird thing: I couldn't move one hand independently of the other. I.e. if I moved one hand up and down, the other would start to twitch even if I tried to keep it down. Luckily, that went away after about a year or two of training. People look at you funny if you tell them you have to train to move one hand up and down while moving the other left and right at the same time. And it's hard. For the first few months, both hands would just move diagonally.

[happyturtle]

Are you talking about UK DLA? If so, I strongly recommend this site (http://www.benefitsandwork.co.uk/home). Well worth the membership fee. I used it to fill out my DLA app and was awarded high rate mobility, low rate care.

Employment and Support allowance though... :smallfurious: They put me in the work related activity group, which means going to meetings every month to discuss what I might be able to do to return to work. Srsly, I get that a lot of people cheat the system, but until I can wash my hair every day without having to rest afterwards, I'm not even going to think about going back to work.

I hadn't seen Foggy Friends before...thanks. :smallsmile:

@Eldan: It sounds hard. And you stuck with it and retrained it enough that you don't have problems anymore? That's great.

[Fifty-Eyed Fred]

As a kid I had something-or-other syndrome (I can never remember the name). Basically, a nerve problem which resulted in just one weird thing: I couldn't move one hand independently of the other. I.e. if I moved one hand up and down, the other would start to twitch even if I tried to keep it down. Luckily, that went away after about a year or two of training. People look at you funny if you tell them you have to train to move one hand up and down while moving the other left and right at the same time. And it's hard. For the first few months, both hands would just move diagonally.

I just tried doing that... it might be to do with the two pints I just had, but the hand I moved left and right did so in circles, as though it was they were struggling against the hand moving up and down and just about winning. :smalleek:

[Runestar]

Not sure if this counts as a physical disability, but I was fairly sickly when I was young. Now fairly healthy, though I must be very careful with what I eat, because my stomach is evidently extremely sensitive. For example, I can't take anything too acidic (such as coffee) or spicy (anything more than a zinger, and that is already considered fairly tame) as it will give me diarrhea. Can still tolerate orange juice on a full stomach though.

Though yeah, I am counting my blessings, having seen this thread. :smalltongue:

[Eldan]

I just tried doing that... it might be to do with the two pints I just had, but the hand I moved left and right did so in circles, as though it was they were struggling against the hand moving up and down and just about winning. :smalleek:

Yeah. Still sometimes happens to me.
But back when I was about four or five, well, I couldn't keep one hand still while doing something with the other. It just moved along. No problems anymore now, except a little lower dexterity than normal.

[Kobold-Bard]

Are you talking about UK DLA? If so, I strongly recommend this site (http://www.benefitsandwork.co.uk/home). Well worth the membership fee. I used it to fill out my DLA app and was awarded high rate mobility, low rate care.

Employment and Support allowance though... :smallfurious: They put me in the work related activity group, which means going to meetings every month to discuss what I might be able to do to return to work. Srsly, I get that a lot of people cheat the system, but until I can wash my hair every day without having to rest afterwards, I'm not even going to think about going back to work.

I hadn't seen Foggy Friends before...thanks. :smallsmile:

...

They did for her too, though she had a really lovely person who got her changed because that was clearly a stupid idea.

She also has really bad dyslexia so the amount of forms she has to fill in probably doesn't help the feeling that they hate us. The main thing is that because they can't cure it/figure out what causes it they tend not to count it as a "real" disability, and she has a difficult time explaining it so they think she's putting it on or something.


I just tried doing that... it might be to do with the two pints I just had, but the hand I moved left and right did so in circles, as though it was they were struggling against the hand moving up and down and just about winning. :smalleek:

It's like trying to pat your head and rub your stomach at the same time. I tried it and they both just went diagonal :smallamused:

Though admittedly it'd probably be less funny if your body forced you to do it.

Edit: I am beginning to think I'm a superhero. When I was younger I had all kinds of problems eg. until the age of 3 or so my lungs were made of fail and so I'd randomly stop breathing, no one (including me coz I didn't know any different) would notice and I'd randomly fall over after a minute or so.

However all my issues have faded, maybe later in life I'll manifest superpowers, like Superman only slower :smallcool:

[IsaacTheHungry]

i got a taste of it, I had knee surgery at 18. they went in expecting the 95% of the time common problem and said i would be fine in a month and found the 5% problem. they had to drill holes through my kneecap :smalleek:

I was expecting only a short downtime before i went in and woke up to 2 months non weight bearing, the first being in bed most of the time, and months more before i could get it strong enough to walk again. it wasn't fun, although on the plus side i could tell you when bad weather was coming :smallbiggrin:

PS. my mom has fibermyalgia, not fun although she can sometimes get it into remission for a time

[bluewind95]

I don't have any disabilities, per se. Just a few... annoyances, I suppose.

One of those is that I apparently have Meniere's Syndrome. It thankfully bugs me very infrequently (now, at least. It sometimes flares up to really, really nasty levels), but when it does bug me, I can't function very well. I need to walk mostly by forcing myself to go about it kind of blindly... I fix my eyes somewhere (if I can), and feel my way around. I got a nice walking stick for this reason.

The second is perhaps the nastier one. I have a little issue named Neurocardiogenic syncope. We didn't even know it was this for the longest time. Its first manifestation was an intense phobia of blood which would cause me to near-faint (or faint, if I didn't toss myself on the ground first) upon seeing blood flow from a wound. We chalked this up to a mere phobia and moved on. The problem turned into feeling excessively fatigued after strenuous activity (such as climbing a flight of stairs...). By fatigue, I mean a pounding, really fast heartbeat and quick, choking breathing served with a side dish of lightheadedness and seeing things in dull colors as well as static-like bright dots. It also began to manifest as sudden, unexplainable drops in blood pressure. We decided the former was lack of physical condition and the latter was stress and we moved on. Till that semester where I spent half of it in bed (or rather, sleeping in class), and all of it feeling as though my heart was going to stop any second. My blood pressure was always too low an my pulse too high. We chalked this one up to a nervous breakdown and moved on... Until I spent 4 weeks in bed because I would be fatigued (same definition as above) for walking a few steps. That's when we got to a cardiologist... and had that little issue figured out. Now it is far easier for me to notice when and why I feel unwell. Of course, the triggers for my condition make things like work and study a true feat of strength to perform successfully... because apart from stress and so on... one of the triggers is to sit still with my legs down. :smallsigh: Guess what is expected of me in a work/study environment. :smallannoyed: Of course, I sit on my legs and get up an ungodly amount of times, for the other result is getting my blood pressure so low that I will simply fall asleep.

I know it's not all that bad, but still. I guess my point is... if you think something is wrong... you'd best get it checked out before it gets REALLY bad.

[Hazkali]

I have an artificial leg, and consider myself very lucky. Because I've had it since I was very young, it's just an instinctive part of my life. It hasn't stopped me traveling the world, having a very active childhood or leading a mobile life. There's an infinite continuum of worse things that could have happened to me.

The only thing I've ever been stopped from doing is donating blood, because of the rules here about giving blood when you've accepted blood. Unfortunate, considering the number of fully healthy people who could donate but don't, but the rules are there for a reason.

[Serpentine]

Huh... I think I have a lot of the things you listed for Neurocardiogenic syncope. Doubt any of them are as bad as yours, and I doubt it means anything, but still.

Australian celebrity-type Adam Hills has an artificial leg. I think it (the lack of the leg, not the artificial one) was a birth defect. They make fun of it quite a lot, but I've never seen him actually show it on TV (as part of a joke someone badgered him into showing his legs. He showed his normal leg, then turned around, and showed the "other" one).

[Kobold-Bard]

...

Australian celebrity-type Adam Hills has an artificial leg. I think it (the lack of the leg, not the artificial one) was a birth defect. They make fun of it quite a lot, but I've never seen him actually show it on TV (as part of a joke someone badgered him into showing his legs. He showed his normal leg, then turned around, and showed the "other" one).

He took his leg off on Mock the Week once and admitted to having drunk beer from it (as all Aussies would :smallwink:).

[Tyrandar]

One of my neighbors was born with only one hand. When she and her mom came over to say hi, my little eleven year old self was all liek "Whoa! What happened to your hand?" I suspected a wolf attack or something. :smallredface:

[Serpentine]

Another cousin has a massive scar down the back of his calf. He caught it on the bumper when he fell off the front of a moving ute and tore it right open.
He, of course, tells everyone 'twere a shark what dunnit.

[Eldan]

Oh, I had a friend once who was born with one leg which wouldn't grow. He had really painful surgery every few years stretching his leg, with metal parts replacing most of the bones. He still had an artificial foot, though, since his real one was only about five centimetres long, and shapes as a baby's.

[Kobold-Bard]

When I was a kid we went to a carnival at there was this game that involved rolling balls (I forget why). The guy running it would slide the balls to you backardly, like he was sneaking them to you.

Turns out he had a condition that meant his hands bent down at the wrist and couldn't be moved, but he went along with it and told me he was a secret agent and undercover. I considered myself a genius that day for figuring it out (yeah, i was a dumb kid :smalltongue:).

[Water-Smurf]

A friend of mine, I believe, had something a little off in his neck. The doctors decided to operate on it in what was supposed to be a relatively simple surgery. (Relative to most neck or spinal surgeries.)

When he woke up, he couldn't move his right arm, three fingers on his left hand, or his neck, which he now needs to have a neck brace to hold. That was a few years ago. He still can't move them and the doctors say there's nothing they can do.

[2xMachina]

A friend of mine, I believe, had something a little off in his neck. The doctors decided to operate on it in what was supposed to be a relatively simple surgery. (Relative to most neck or spinal surgeries.)

When he woke up, he couldn't move his right arm, three fingers on his left hand, or his neck, which he now needs to have a neck brace to hold. That was a few years ago. He still can't move them and the doctors say there's nothing they can do.

... Why do I have the feeling that the operation caused that?

[Yarram]

I have nothing. I am glad. My step-bro has osteogenesis (http://www.medic8.com/genetics/osteogenesis-imperfecta-type3.htm) and so is wheelchair bound.

Super tough break. :(

[Knaight]

Wow. I feel lucky now, I only have a few minor problems. Bones being slightly off the shape they are supposed to be, inability of my calves to take impact well (probably because there is a slight bend where they shouldn't be), and less cartilage than I am supposed to have. Though the noises my spine makes with some movements does worry me a bit, and while it is in roughly the right spot the vertebrae are a bit loose. That just seems so minor in comparison to so much of the stuff here.

[happyturtle]

Its not a race to the bottom. Everyone's experiences and problems are equally valid. :smallsmile:

I'm going to visit my family in the US next month - my first trip since I got sick, which is going to be a huge endeavour. But my sister found a wheelchair at a yard sale for me to use when I'm there, so I don't have to worry about that any more at least. :smallsmile: I love being relieved of making a decision. Even if it isn't the best mobility solution for me, it at least puts off a decision for a while, and some actual time using a wheelchair should help me know what sorts of questions to ask.

[Kobold-Bard]

Its not a race to the bottom. Everyone's experiences and problems are equally valid. :smallsmile:

...

<Borrows goat from the Depression Thread>
<Smacks those that say their problems are less valid>
<lol's>
<Return's goat to Bor>

You may need to get one of those for yourselves, just in case.

[Water-Smurf]

... Why do I have the feeling that the operation caused that?

It was. My friend and his wife decided to sue (they needed the money because he can't work the way he used to anymore), and they found out that the surgeon had two other lawsuits pending for the exact same problem from the exact same operation. Why the hospital was letting him keep do that surgery was beyond them.

[Hazkali]

He took his leg off on Mock the Week once and admitted to having drunk beer from it (as all Aussies would :smallwink:).

I saw that episode! In fact, trying to find it on YouTube I came across some stand up of his here (http://www.youtube.com/watch?v=NxpkgqBSOPY) on his leg, quite funny, especially the bit about airport security.

[Cealocanth]

The thing about disabilities is that they can happen at any time, to anyone at all. Even Superman has a chance of permanently disabling himself. Some lucky ones get warning, and it comes slowly. Many experience it quickly and traumatically, changing their lives in an instant.

The important thing is to not let it ruin your life. Thank you Playgrounders for addressing this topic, it is one so important and yet so often ignored.

As for physical disabilities? I have none :smallbiggrin:. My mom has Fibro Myalsia, it runs in the family. I have seen many deformed folk around, it's nice to see the Playground taking part in the community.

[Xyk]

I feel somehow guilty for strongly considering Parkour (http://en.wikipedia.org/wiki/Parkour). Like I'm flaunting it or something. Here's an "I'm sorry not everyone is born equal cake"

http://scienceblogs.com/retrospectacle/all%20my%20base%20cake.bmp

It also indicates exactly how much of my base are belong to you.

[SDF]

SDF is messssed up! :smallbiggrin:

I have type 1 diabetes, hypothyroid, I recently realized I've got genu valgum, polythelia (Three nipples, note: not three breasts), vitiligo (the "Michael Jackson disease") ... stained white tailbone and a shock of distinguished white hair, suffer from occasional acne, and I'm part French way back on my mothers side.

No mobility problems, other affects from thyroid or diabetes (I have 20/15 vision, can run a mile in around 6 despite the knees) other than the occasional off blood sugar. I might die at 40, but I've got my boyish good looks, intellect, charm, and relative physical abledness.

[Ilena]

Well, myself im ok (mostly anyway :P) but i had a friend who sat beside me at work, and things moved on and we moved to different contracts at work, a year later i heard he got hit by a car walking home from work, lost his leg :S Only about 25 years old, havnt heard anything about it since (this was about a year ago) so ya, things can come up on you unexpectedly.

[Matticus]

I'm not disabled, but I have muscular dystrophy, one of the more mild forms. As it is the only effect is that my legs bend in weird directions without pain or anything, but when I get older it'll get worse and worse slowly until my legs are too weak to use at all.
still, I might get lucky and not live long enough.

[golentan]

Nothing on the level of many of the things here, but I have a hereditary trait that's a little similar (visually) to Palsy. It's not threatening or anything, but on bad days I have to wear wrist weights to keep my hands steady enough to write. It evidently gets worse with age: My grandpa's hands twitch back and forth downright alarmingly.

[happyturtle]

I had an appointment scheduled tomorrow for Work Related Activity. Because I'm feeling worse than usual, I called to reschedule it. Only to get told I would need a doctor's note to prove that I wasn't well. Just to reschedule it for later this week.

I looked online and apparently the only thing they can do is stop my benefit from the time I don't participate and reinstate it once I do again. So basically they can cancel my benefit for two days if I show up without the doctor's note. Let them. I am not going to go to the doctor, sit around in the waiting room tiring myself out, and use up one of their emergency slots just so I can get a piece of paper that says I'm telling the truth.

[pendell]

*Waves*

Asthma. This means I can't run hardly any distance at all without gasping for breath. It's not an obvious handicap (no wheelchair or anything) but 20% of a normal human's lung capacity has all kinds of ways of coming back to bite you if you forget for a minute that you've got that problem.

One of the reasons I'm working in computers rather than, say, chasing terrorists in the mountains of Afghanistan.

Respectfully,

Brian P.

[Eldan]

SDF is messssed up! :smallbiggrin:

I have type 1 diabetes, hypothyroid, I recently realized I've got genu valgum, polythelia (Three nipples, note: not three breasts), vitiligo (the "Michael Jackson disease") ... stained white tailbone and a shock of distinguished white hair, suffer from occasional acne, and I'm part French way back on my mothers side.
.


Part French? Oh you poor, poor person. :smalleek:

Sorry. But that was such an obvious joke.

[Timberwolf]

I'm keratoconic (https://www.eyeconx.com/uploadimages/keratoconusA.jpg). It's like super, super astigmatism, treated with hard contact lenses to hold back the growth into a cone shape of the corneas in my eyes. My corneas are getting thinner and more brittle as more tissue is replaced with scar tissue. I've cracked them once already (and that hurt...). Soon it'll be corneal transplants for me, can't wait.

[Kobold-Bard]

I feel somehow guilty for strongly considering Parkour (http://en.wikipedia.org/wiki/Parkour). Like I'm flaunting it or something. Here's an "I'm sorry not everyone is born equal cake"

...

Don't feel guilty for not being disabled, it's hardly your fault is it. :smalltongue:

[The Watchman]

Don't feel guilty for not being disabled, it's hardly your fault is it. :smalltongue:

Yes, it is, and you should feel horrible.

[Kobold-Bard]

Yes, it is, and you should feel horrible.

Wait, you mean he intentionally kept himself un-disabled? I thought it was just an accident.

BURN THE WITCH!! :smallfurious:

:smallwink:

[Ormagoden]

I got this (http://en.wikipedia.org/wiki/Psoriatic_arthritis), it stinks.

[TheThan]

My dad has rheumatoid arthritis and two separate back injuries. The triple shot disabled him and I’ve been trying to take care of him, so while I’m not handicapped myself I know what its like to try to take care of someone that is. So my heart goes out to those that are disabled.

[lsfreak]

I've probably numerous small problems. The big one, though, involved sledding down a hill my junior year of high school. There was a bump I didn't see, I tensed up mid-air, and upon landing crushed the front of one of my vertebrae by 10mm. Fortunately by now the chances of splinters of bone getting into my spinal chord are about zero (and weren't high to begin with), but from what I remember being told, the surrounding discs are gone and I can look forward to severe arthritis in the next 6-8 years. This thread reminded me I should probably look into it some more to see if anything can be done; last I checked it was far too expensive and insurance didn't cover it.

[Sereg]

My mother had mutiple sclerosis. She was often bed-ridden and most of the time she was a quadriplegic. She was also blind.

[TheThan]

well I think that a music vid (http://www.youtube.com/watch?v=rg7ZRZyQJ5U&feature=PlayList&p=44782B6C30138262&playnext_from=PL&index=19) is appropriate for this thread.

[Temotei]

I have a friend who has a mom with MS. Err...not the same, but still. I see her ability to move around slowly decline and it saddens me sometimes. Then again, she's sort of accelerating it by drinking and smoking. :smallsigh:

Me mum had breast cancer. After that, she got pretty bad back problems that stop her from doing a lot of heavy lifting and such. I'm not sure if that was caused by the cancer or if it was just a result of lying in bed for so long or what, but it stinks any way you think about it. Golfing, we don't do much anymore. :smallsigh: She has trouble driving (golf), mostly.

I'm pretty darn light for my age and height. It's annoying. I can't gain weight, no matter what I do. I work out for months straight (weight lifting) and I somehow gain only two pounds. It's not like I had fat to lose, either, because...I didn't and don't. :smallsigh:

I'm a skinny one at 5'9" and 125 pounds (approximately). At least physical prowess =/= muscle mass. :smalltongue:

Still, I'm thankful I don't have anything serious. I'm still growing, so I'm not really worried.

Life isn't really fair, eh. It deserves a kick to the teeth.

[Extra_Crispy]

Lets see I was born with arthritic knees. Not too bad though, they are very strong and I can lift lots of weight but hitting them hurts very very bad, I cant kneel down or bend them completely for any amount of time or they start to hurt very very bad.

I was on disability for 4 years after my accident. I learned to walk again and now do not have any obvious restrictions or disabilities. I cant run because my left ankle lacks alot of movement because of the scars around it. My left thumb is about 1/4 inch shorter, has no nail, and I can not move the last kuckle. I had a bone spur in my left forearm that basically attached the 2 bones of the forearm together causing me to be unable to straighten my elbow and turn over my wrist, palm up. That spur has been removed and I have much more movement but still lack some. The scars of my left side continue up through the left underarm and down my whole left arm. They limit my reach and stop me from raising my left arm very high, but not too bad, plus my right arm is fine and I am right handed so I compensate well. Finally the scars around my upper shoulders and neck limit the amount of movement in my neck, but very little and I can compensate for that by moving my whole upper body or bending my back. They are not really disabilities just limitations that I have learned to work around.

[Grumpy-Mcfart]

while it's not an obvious physical disability, I was diagnosed with Focal segmental glomerulosclerosis (http://en.wikipedia.org/wiki/FSGS) when I was twelve, and it's a serious hassle.




the funny (and by "funny" I mean "tragic") thing is that I was one of those kids who was going to be an astronaut until this happened.

[rakkoon]

Not disabled but since I have a desperate need to contribute:
I have Guilberts Disease (http://en.wikipedia.org/wiki/Gilberts_disease) which essentially means I can't eat fat foods/drink alcohol in excessive amounts. And I'll never know the joy of heroin or cocaine.
I did lose 30 pounds in one month when I wasn't diagnosed yet.
That was a fun month :smallfrown:

[Serpentine]

Those drug limitations seem oddly specific. Which makes me wonder: what sort of drugs would you be able to take? :smallconfused:

[EleventhHour]

well I think that a music vid (http://www.youtube.com/watch?v=rg7ZRZyQJ5U&feature=PlayList&p=44782B6C30138262&playnext_from=PL&index=19) is appropriate for this thread.

I was sort of expecting that to link to this one (http://www.youtube.com/watch?v=QPoTGyWT0Cg&feature=related), I guess it's more of a depression-thread type song.

[rakkoon]

@Serp
I'm not in the mood for a thorough research :smallbiggrin:
I have a bad liver, which means that if I drink a bottle of whiskey, I'll be sick for three months while a normal person would be sick for three days.
I know of one person who also has the disease and who drunk 25 beers in one evening. It would be easier to put a knife in your belly...
He started to turn into a blackish colour and was briefly in a coma.

So no comparative drug studies for me. I'll keep to cola and salty food!

[Spiryt]

I know of one person who also has the disease and who drunk 25 beers in one evening. It would be easier to put a knife in your belly...
He started to turn into a blackish colour and was briefly in a coma.


Hell, what kind of beer it was?

If I drunk 25 standard 5 % lagers I would also be in coma, and I have pretty OK working liver. :smallwink:

[rakkoon]

It was a girly beer called Rodenbach (5,2%).
I mean, if you want to commit suicide through your liver, use a REAL beer :smallwink:

[Spiryt]

How the hell 5,2 % alcohol volume make "girly" beer? Sounds pretty standard. :smallconfused:
And if it's this Rodenbach (http://en.wikipedia.org/wiki/Rodenbach) it looks like pretty respectable company.

[rakkoon]

It is a beer with a fruit flavour. A RED fruit flavour.
I stand by my earlier opinion :smalltongue:

[Sereg]

I have a friend who has a mom with MS. Err...not the same, but still. I see her ability to move around slowly decline and it saddens me sometimes. Then again, she's sort of accelerating it by drinking and smoking. :smallsigh:

Well, there's a lot of variation in how it progresses. It was unusual for my mother's eyes to be affected first. It's a pity that your friend's mom isn't taking care of her body though.

[rakkoon]

My wife's ...(female version of best man) got MS when she was 27. She just got married, bought an old house with 7 bedrooms to fix up and did Kung Fu for 6 hours a week. Now she has a stoma, is fulltime in a wheelchair and has problems with her memory. Apparently you can have MS in multiple forms and she has the worst one. Whenever I think I have a problem I think of her.
Perspective...

[Serpentine]

Maid of Honour. Sucky :smallfrown:

My mother... When she was a teenager, her hip bone dissolved. Can't remember what the disease was called, but yeah, the round bit on the top of her hip just dissolved. She had to lie in hospital for... more than a year, maybe two, while it grew back again. But it grew back lumpy. For decades, if she walked too long or far she started to limp, and she tended to have to have a cane around. Eventually, she got a hip replacement, and was largely fine.
BUT. Supposedly independent of that, she started having excruciating pains in that hip. She said it was worth than giving birth. She had to sit down and cry and couldn't do anything until it went away. Still don't know what causes/d it, but she takes epilepsy tablets (among many other things...), and that seems to stop it ever happening.

[Sereg]

My wife's ...(female version of best man) got MS when she was 27. She just got married, bought an old house with 7 bedrooms to fix up and did Kung Fu for 6 hours a week. Now she has a stoma, is fulltime in a wheelchair and has problems with her memory. Apparently you can have MS in multiple forms and she has the worst one. Whenever I think I have a problem I think of her.
Perspective...

That is true. My mother also had one of (if not the, can't remember) worst forms. She was also experiancing dementia in the couple of days before she fell into a coma. Of course, that might have been from the septecemia. I'm not sure.

[rakkoon]

That's hard... I wish you more luck in the rest of your live(s)
(ek wens julle alle sterkte toe)

[Sereg]

That's hard... I wish you more luck in the rest of your live(s)
(ek wens julle alle sterkte toe)

Dankie. Jy praat Afrikaans! Is jy van Suid Afrika of het jy van 'n ander plek geleer? Ek moet se dat my Afrikaans is nie baie goed nie as ek is Engels en nie goed met tale nie.

Translations for the rest of the world: (rakkoon wished us well (gets a bit lost in translation.)) Thanks. You speak Afrikaans! Are you from South Africa or did you learn from another source? I must admit that my Afrikaans isn't very good because I'm English and not very good with languages.

[blackfox]

Nothing terrible here. I've got low blood pressure and some degree of vertigo, which means it's very easy for me to get dizzy and sometimes pass out. Apparently it's because my body fat's low or something like that. I have no idea why. The other problem I've got is anxiety, which really oughta raise blood pressure if anything.

I got pretty lucky with my family/genes--great-grandparents all lived to between 80 and 105 IIRC, my living grandparents are all in their late 70's and in good health for being in their late 70's, etc. I can probably expect to live to 90 or so, barring any serious physical injuries. Gawd I have to stop breaking bones already.

[Serpentine]

I can't hear anything about South Africa without saying "Seth Effrikeh".
No relevance, just was reminded of it.

[Juhn]

well I think that a music vid (http://www.youtube.com/watch?v=rg7ZRZyQJ5U&feature=PlayList&p=44782B6C30138262&playnext_from=PL&index=19) is appropriate for this thread.

Huh. I've never seen/heard that one before; I rather like it actually. Thanks for introducing me to it.

[Groundhog]

It must be tough when presented with stairs, or offered a day of mountain climbing. My sympathies.

Stairs are bad, yes. Luckily, most places have elevators. Mountain climbing...amazingly enough, that doesn't bother me very much, probably because I'm allowed to use my hands to pull myself up then. Unfortunately, many places have started cutting steps into their mountain trails, to make them easier for people to use. Rather ironic.

[Dallas-Dakota]

Rawr, ignore stairs. take the ''hard way''

[Eldan]

Oh god, genes. Don't remind me. My family on my father's side has a long history of both heart diseases and cancer. My great aunt and my grandfather (brother and sister) both died of lung cancer.
Of course, they also both were chain smokers, while I've never smoked. I hope it helps.

[happyturtle]

I'm starting to get a little bit scared about my upcoming trip to the US. I've done everything I can to try and make it go smoothly.

I have someone coming to help me pack a few days before. I'm going to London the day before the flight and spending the night in a hotel by the airport, so the 2 hour taxi ride isn't on the same day as the flight. I'll have wheelchair service at the airport at both ends. And then my dad will be picking me up and it's another 2 hour ride to my parents house.

I'm scared. It makes me so tired now just to do something like have a bath, and I'm going to actually survive this trip? And have energy to spend with my family? And then make the trip again in two weeks to return?

*hugs knees and rocks back and forth*

[Trog]

Wait...asthma is being counted as a physical disability now? :smallconfused:

[happyturtle]

:smallconfused: Well, I do have asthma, but the disability is from CFS/ME. I imagine asthma can be disabling if it's severe enough though.

[Bor the Barbarian Monk]

happyturtle: Being disabled, and having traveled myself, I'd have to say you've done all you can on your end to make the trip easier. The one thing I live by is: The airline can lose everything I'm bringing with me, but I MUST have my meds. It's for this very reason that I bring my meds in my carry-on bag. I'll live without a change of shirt, but a lack of insulin will kill me...LITERALLY! :smalleek:

In terms of convenience, however, I recommend you have a day or two's worth of clothing in your carry-on bag. Airlines have made losing luggage an art form, and it would be psychologically helpful to know that if they do just that with your things, you'll have a change of clothes on you.

Oh...And in terms of my disability, I have Type 1 diabetes for almost 36 years. (September makes that official.) Thanks to the "wonderful" care I gave my diabetes when I was a teen, I now have complications of diabetes...including complications of the complications! (I can give the list if anyone is REALLY interested.) In fact, I'm having surgery this upcoming Wednesday to correct one complication of a complication.

I've been pointing this out to several people, and few can find argument in what I say. "If a stranger knocked you out, cut you, and took an organ or some such, you'd have them arrested for assault. But you sign one little form, and suddenly it's okay for a doctor to do it!" :smalltongue: That said, I'm off to play one computer game or another in the hopes of ignoring the building stress of my scheduled assault.

[happyturtle]

If I have the energy when I'm in the US, me and my mom want to get tattoos. And my mom and I saw this video (http://www.youtube.com/watch?v=00BZCjVK_6I) about CFS which inspired us to get matching Phoenixes. Then my mom said 'They should be carry a spoon (http://www.butyoudontlooksick.com/articles/personal-essays/the-spoon-theory-written-by-christine-miserandino/)'.

But then I saw this symbol (http://3elove.bigcartel.com/about-symbol) and I like it too.

http://i587.photobucket.com/albums/ss317/brandxhype/itsoa1-2.jpg

But I think I'm leaning towards the phoenix/spoon rather than the love wheelchair.

What I wish there was is a widely accepted symbol of disability pride, but the love wheelchair is trademarked, which seems to suggest that it isn't available for that sort of use. Maybe some clever artist in the playground can come up with something.

[Trog]

:smallconfused: Well, I do have asthma, but the disability is from CFS/ME. I imagine asthma can be disabling if it's severe enough though.
Well, I was referring more to pendell's post where the only thing he mentioned was asthma. I dunno, it sort of stopped me dead... because I have asthma as well and I never... I dunno... never considered it to be a physical disability. Though I suppose it does place some very definite limitations on me.

Just... never thought of it in that way before, I guess.

[Thajocoth]

Worst I've got physically is bowed legs. It's occasionally painful, but not too bad. I'm fortunate enough not to have any real disabilities.

[absolmorph]

Any disease or disability that forces you to wear a fanny pack should not exist.
...
I mean, it shouldn't exist anyway, but this is just... cruel. :smalleek:
New Zealanders might like a fanny pack. YMMV, of course, but it would certainly be a novelty.

On-topic, I'm pretty much as healthy as can be. Aside from possibly living on too little food for a year or so (which has been fixed for a couple months). It was under my control, and I'm not certain, but it's entirely possible.
So, yay me, I guess.

[happyturtle]

Some disability activists use the term "Temporarily Able Bodied". Most disabilities are acquired rather than congenital. You never know when it could all be gone. It could disappear in an instant in an accident - a car wreck, a bad fall, a sports injury. It could be ripped from you slowly by disease - CFS, arthritis, Crohn's disease.

Cherish your good health. :smallsmile:

[Serpentine]

New Zealanders might like a fanny pack. YMMV, of course, but it would certainly be a novelty.A New Zealand fanny pack would be... different :smalleek:

[Vaynor]

I don't have any major problems, but one of my legs is slightly longer than the other (or one of them is slightly shorter, however you want to take it). It gives me a slight limp and causes a lot of back pain, but it's not that bad.

[happyturtle]

Oh... there's another term for the able-bodied: Disability-challenged. :smallbiggrin:

[horngeek]

Oh... there's another term for the able-bodied: Disability-challenged. :smallbiggrin:

:smalltongue:

Funny.

I have mild Asthma... but that doesn't really count, given how rarely it comes up.

...both of my conditions that could be classified as 'disabilities' are mental ones. And I don't think one of them's a disability anyway.

[Saurus33]

I am a type 1 diabetic and a teenager; luckily, my compulsive/anxious tendencies mean I take very good care of it, if only at the cost of near-constant monitoring.

Mentally, I am schizophrenic, or at least my psychiatrist is saying that's probably it. I also suffer from a variety of anxiety-related stuff, and often suffer from depression.

Though, only two of those really count; the rest are irritating but manageable.

[happyturtle]

Funny... just as you were typing that, I was using my steroid inhaler. June is the worst month of the year for my asthma. Not sure what plant or tree is doing it, but it's definitely unpleasant.

I deliberately made the thread about physical disabilities because the challenges are so different. Having your body not work right is a lot different than having your brain not work right. Not harder or easier, just different. And the accommodations needed to deal with the physical tend to be about acquiring "stuff" and learning how to use it. Big stuff like wheelchairs and stair lifts to little things like long handled hair brushes. And of course for people who have mobility impairments, when we think about going somewhere, we always have to try and work out whether we can physically get there. Can the taxi get close enough to the front door for me to walk in? If the place I'm going isn't on the ground floor, is there a lift? If I have to take something with me, how will I get it there when I can't carry anything?

I imagine a parallel thread about mental disabilities would be helpful to people, if someone wanted to start it, but perhaps the Depression thread already serves that purpose? I don't visit that thread, so I don't know.

[horngeek]

I imagine a parallel thread about mental disabilities would be helpful to people, if someone wanted to start it, but perhaps the Depression thread already serves that purpose? I don't visit that thread, so I don't know.

It doesn't.

[Quincunx]

A New Zealand fanny pack would be... different :smalleek:

Only if the zip was an oversized happy face! :smallbiggrin: (No, I'm not linking that comic here.)

Happyturtle: I missed if you had your trip already or not, but if it's not come to pass yet, do use it to acquire The Eye (e.g. will the chair fit through this passage and what slope angles and size gaps can I traverse while in it without panicking). If you do end up liking it, I'll happily throw what I know about wheelchair-friendly clothing at you.

[happyturtle]

I leave tomorrow! :smalleek: :smallbiggrin:

I can't wait to see my family again! My bags are packed, passport in place, US currency procured, lots of prezzies for the niece and nephew (ages 6 and 3) packed... today I'm making phone calls to check that all my reservations are in place.

But mostly resting. Pacing pacing pacing (http://www.cfidsselfhelp.org/library/topic/Energy+Envelope+and+Pacing)... that's the key to managing CFS, and the only way I got to the point where I could even consider doing something as daunting as air travel.

[SpiderMew]

I have osteoperosis. I was told i had it at 14. (i once fell 3 ft and broke all the bones on the right side of my body, i was stuck in a wheelchair for a year)

Also, because of the constant levels of pain im in (and other factors), various people think i may have fibromyalgia, but i cant afford the doctors visits to go get tested for it.

My mom is worse off then me, curved spine, mutple hernias (she had hernias wrap up her intestans and those went gangreeen and she had to have75% of her intestans removed) neropthy (she cant feal her legs right due to nerve damage, she discribes it like the pins and neadles fealing you get when you sit on it for a long time then get off of it, its like that but all the time)
And she's got other things i dont remember what they are called.
She gets arround in an electric wheelchair.

[Bor the Barbarian Monk]

The Depression Thread DOES serve the purpose of helping people. But it tends to be a bit more intense than this little thread, as people usually come to the DT when they're in crisis. People rarely show up and say, "Hey, I'm doing great! Nothing wrong here. Just wanted to share the good news."

Difficult to tackle is mental illness associated with being physically ill. It's a fact: those who are affected physically will suffer some kind of mental illness. Depression is usually the one attached, but it's not necessarily the only one to come along. And diabetes mellitus has its own special place in my book.

You see, like oxygen, the brain needs sugar to function. Without insulin, the brain essentially sits in a bowl of maple syrup, unable to work properly. If a diabetic's blood glucose drops, then the brain is starving for energy, and will discontinue its functions...like staying conscious. High blood sugar has made me hit people, despite my being a pacifist. Low blood sugar caused me to pass out once. (You shouldn't make me pass out, Johnny. My blood sugar made me pass out once...ONCE! :smalltongue: ) Good time, good times.

Happyturtle, thanks for posting "The Spoon Theory." It was so on target with my life that I reprinted it on my blog, giving full credit to Christine, the original author. I'm hoping that those who follow my blog, be they publicly doing so or doing it in secret, will gain an understanding of what my life is like.

[Kobold-Bard]

The Depression Thread DOES serve the purpose of helping people. But it tends to be a bit more intense than this little thread, as people usually come to the DT when they're in crisis. People rarely show up and say, "Hey, I'm doing great! Nothing wrong here. Just wanted to share the good news."

I do that if it's stuff I've mentioned in TDT.


Happyturtle, thanks for posting "The Spoon Theory." It was so on target with my life that I reprinted it on my blog, giving full credit to Christine, the original author. I'm hoping that those who follow my blog, be they publicly doing so or doing it in secret, will gain an understanding of what my life is like.

I use it to explain about CFS when people give me blank looks, its very useful.

My granddad had his leg amputated recently. Given the 10 billion other conditions he has atm he's not long for this world, but while he is does anyone have any advice for anything that might help?

[RabbitHoleLost]

I once had a conversation with my Stepmother(Who, like Happy, has CFS and also Lupus) about the Spoon Theory. See, for years, I've had it crammed down my throat, and, having never had a good relationship with my Stepmother, I never really took any thought to it and considered it my stepmother's typical crap, until recently.
Its interesting, once you think about it, because it applies to a variety of people for various reasons. Each person has their own set of spoons, really, and it takes certain people certain amounts of spoons to do certain things, and its always different depending on the individual.
I'm not always good at explaining my thoughts, but I think the Spoon Theory is a very good, practical analogy for many, many things.

[Lillith]

Wow, I feel so healthy right now. Wish I realized that sort of thing sooner. Gonna think twice before I´m going to whine about a pulled muscle or a headache. *ashamed* I´m not really physically disabled or challenged, unless you count flat feet and migraines. I have a weak neck though due to the fact that when I was little I made a wrong move and my third neck disk moved and caused permanent damage.

My eldest cousin has it worse though. When she was little she had youth rheumatoid arthritis. We thought she grew over it but about a year ago it suddenly came back in full force. At the moment it´s going better, her medicines are working. Still sucks though. :smallfrown:

[happyturtle]

I would never ask an able bodied person to be ashamed of feeling miserable when they are hurt. All I ask of the able-bodied is awareness, compassion, and most of all... belief.

I'll soon be in a wheelchair so my disability won't be invisible anymore, but really the hardest thing about having an invisible disability is the people who think it's all in your head. Don't judge the person who parks in a handicapped spot who doesn't look disabled. They may be in terrible pain with every step, or their trip out today may be followed by a week of being bedridden.

But hey, pulled muscles hurt! Headaches hurt! You're allowed to complain. :smallwink:

[Lillith]

Ghehe, thanks. And yes they do. :smallwink: But yeah I learned some time ago that some disabilities can't be seen. My father for instance had a stroke in one of his eyes and because of that 1/3rd of his eyesight in that eye has vanished. Though the most awakening story to me was when I was at school and a woman came to hold a speech, don't remember what for. She had something with her eyes and needed a blind walking cane thing (sorry forgot what they're called in English). Her story was that people were looking at her funny or mad when she read a book in a store. She wasn't blind but had like extreme tunnelvision where she could only barely see. Not really a good example of 'invisible disabilities', but it made me realize that some disabilities/handicaps are different than your standard book examples and that you shouldn't just assume stuff about what could hinder/hurt/etc a person.

[Kobold-Bard]

...She had something with her eyes and needed a blind walking cane thing (sorry forgot what they're called in English)...

I personally use the very technical term of "White Stick" :smallwink:

[Knaight]

Wow, I feel so healthy right now. Wish I realized that sort of thing sooner. Gonna think twice before I´m going to whine about a pulled muscle or a headache. *ashamed* I´m not really physically disabled or challenged, unless you count flat feet and migraines.

I have flat feet and migraines as well, and migraines can be crippling. Mine aren't, but still, migraines can be worth complaining about. As far as flat feet, I went 1 day wearing shoes without orthopedics (sandals, they always slide around), and now I'm limping heavily. Oh well.

[Bor the Barbarian Monk]

My granddad had his leg amputated recently. Given the 10 billion other conditions he has atm he's not long for this world, but while he is does anyone have any advice for anything that might help?
While my Uncle Jimmy was slowly dying from leukemia, we had a lengthy, ongoing correspondence. It was only toward the end of his life that he reached out to anyone, and I was one of the few who took the time to get to know him. He was an entertaining and wise man, and I let him know these things.

Really, the only thing one can really do for a dying loved one is let them know that they are, in fact, loved. It may be no easy feat, but spend time with your grandfather. Play card games, board games, chat...whatever. Just let him know that you're there for him and that you love him. And you should do your best to personally prepare for the day when he will pass on.

[Copacetic]

Please don't take any offense, I'm sure you're all wonderful people, but I'm honestly really glad I can't count myself amoungst ya'll. :smallsmile:

I'm thankful for a sound Body, Mind, and Moral Fiber (Wheaties help with all three).

[d13]

I would actually be pretty fine... Not counting a couple of broken bones that didn't heal the way they were supposed to (mainly fingers), and have strange shapes/make strange sounds...

If it weren't for my heart. Though I don't have a disease per se, I've been diagnosed with "we-don't-know-what's-wrong-with-you-but-your-heart-might-stop-beating-any-of-these-days".

So, the only thing I can do, is religiously drink my daily glass of wine, and hope that the heart stoppage day is not soon :smalltongue:

[Battleship789]

I got this (http://en.wikipedia.org/wiki/Psoriatic_arthritis), it stinks.

Same here. :smallannoyed:

I've had the symptoms for at least 4 years, but didn't get diagnosed until February of this year since I thought the pain was from lack of exercise and/or sleep and neither I, nor my family, realized how inflamed most of my joints were. Thankfully, after a few months of tinkering with medications my pain and inflammation has almost completely disappeared! :smallbiggrin: Now it's time to get the flexibility (physical therapists: the only doctors who will tell you to continue doing something that hurts, with 50 more reps) and strength back that I lost while incapacitated. :smallmad::smallsigh:

[happyturtle]

I'm in the US, having survived the trip.

The wheelchair service at Dulles Airport in Washington was excellent.

In Heathrow, not so good. I took notes, and will have a long post about it when i get back. I'll want to compare the airports in both directions as well. Getting someone /to/ a flight is logistically more fiddly than getting them /from/ a flight, I imagine.

On the plane itself, the Virgin air stewards were willing to get my bag up and down whenever I asked them in person, though they rarely responded to the stewardess call button. No idea why.

[rakkoon]

So...any plans on turning into a teenage American turtle?

Note to self: shout to stewardess if you want something done

[Firestar27]

This guy isn't in the playground, but he's still awesome. He's auditioning for a TV show on Oprah's new channel, and he's already got millions of votes. He has cerebral palsy (which he believes is the sexiest of the palsies). He's also hilarious. Check him out: http://www.youtube.com/watch?v=T_35KKa3b1c

[Knaight]

Well, right now I'm temporarily disabled due to my own stupidity. Somehow I got it in my head that it would be a totally brilliant idea to walk barefoot for about two miles, do a ton of armed sparring for hours, which involved about another 2 miles walking, then walk two miles back on blisters. Now I'm missing a chunk of skin on the bottom of one foot, and can barely walk, though its better than yesterday when I had to hobble everywhere. Running is right out. Although I'm not sure I should be complaining, I brought this on myself due to my own cockiness.