echoshifting
Banned
An orphaned OT community thread, awwwww 
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Disability-Age
- Thread starter RawPower
- Start date
I was born about 6 weeks premature at 22 week duration into the pregnancy. Due to being born that early I had collapsed lungs, and went on an incubator to help me breath properly. However that caused problems elsewhere, such as with the muscles behind my eyes which stopped developing early because they had too much oxygen getting to them. I also suffered 2 brain hemorrhages which left 2/3rds of my brain shut down. I was basically never supposed to walk, talk etc, according to the midwife when I was finally allowed home from the hospital, 6 months after being born. It left me with my eyes being registered blind, and moderate hearing loss in both ears. Throughout school I was assisted by helpers who would, say, write down what was on the blackboard for me because I couldn't see it from sitting in the front row.
Around my teens I was diagnosed with Spastic Diplegia (a mild form of Cerebral Palsy), which meant I can't walk very far without my legs beginning to really, really hurt. Other than that, though, I generally got on with things as any normal person would. I can talk, walk etc, and I even went to a grammar school in rather than a high shool for secondary school, and then college and university too. I didn't walk out of university with a degree in hand though, I spent all five of the allowed years of my education support grant (can't remember the correct name for it, but it payed for such things as hiring a helper in class - whom were agency workers) on 5 years at university. Looking back I am conflicted. One the one hand I never 'quit' attempting to achieve a degree, but on the other hand I never got one, put myself into a load of debt, and think I may have messed-up my chances of employment.
Now when I apply for jobs, if I get anything, I get an interview and then get rejected. Sometimes I'm rejected straight away, but most of the time I just never hear anything back. Even the police force didn't take me on for an I.T. admin job. My main problem is this: If people don't just bin the application at the first sight of disabilities, they then see someone who's been to university for 5 years and not achieved a degree. They see someone with no prior job experience (due to going straight through the higher education system). I know what people are thinking. Volenteer work, easy solution, you get the experience you need etc. Nope. My JobCenterPlus people say that as part of their 'back to work' scheme I cannot take on a volenteer position unless there is specifically a job position waiting for me at the end of it (which there never is, or else the company would already be looking to hire someone). I'm stuck in a catch 22/between a rock and a hard place.
I now sit here on the computer most days. I don't go out much due to the Spastic Diplegia hurting my legs. This lack of movement has caused it's own problems though, such as Venous Stasis/Venostasis; which basically is slow blood flow in my leg veins. My feet look as though they are dying due to the blood leaking from the veins on the way back up my leg and staining my feet with speckled red dots, which later turn dark brown. My toes seem to be permanently red, I assume due to having excess blood in them.
Around my teens I was diagnosed with Spastic Diplegia (a mild form of Cerebral Palsy), which meant I can't walk very far without my legs beginning to really, really hurt. Other than that, though, I generally got on with things as any normal person would. I can talk, walk etc, and I even went to a grammar school in rather than a high shool for secondary school, and then college and university too. I didn't walk out of university with a degree in hand though, I spent all five of the allowed years of my education support grant (can't remember the correct name for it, but it payed for such things as hiring a helper in class - whom were agency workers) on 5 years at university. Looking back I am conflicted. One the one hand I never 'quit' attempting to achieve a degree, but on the other hand I never got one, put myself into a load of debt, and think I may have messed-up my chances of employment.
Now when I apply for jobs, if I get anything, I get an interview and then get rejected. Sometimes I'm rejected straight away, but most of the time I just never hear anything back. Even the police force didn't take me on for an I.T. admin job. My main problem is this: If people don't just bin the application at the first sight of disabilities, they then see someone who's been to university for 5 years and not achieved a degree. They see someone with no prior job experience (due to going straight through the higher education system). I know what people are thinking. Volenteer work, easy solution, you get the experience you need etc. Nope. My JobCenterPlus people say that as part of their 'back to work' scheme I cannot take on a volenteer position unless there is specifically a job position waiting for me at the end of it (which there never is, or else the company would already be looking to hire someone). I'm stuck in a catch 22/between a rock and a hard place.
I now sit here on the computer most days. I don't go out much due to the Spastic Diplegia hurting my legs. This lack of movement has caused it's own problems though, such as Venous Stasis/Venostasis; which basically is slow blood flow in my leg veins. My feet look as though they are dying due to the blood leaking from the veins on the way back up my leg and staining my feet with speckled red dots, which later turn dark brown. My toes seem to be permanently red, I assume due to having excess blood in them.
Aye. Muscular Neuropathy here.
Cameron122
Member
I have Cerebral Palsy. Spastic Diplegia Form. Can't balance for shit so I'm in a wheelchair. I feel like I'm one of the lucky ones though.
I have a mild tinnitus in my left ear and something wrong with my spinal cord but that's nothing compared to what some of you have to deal with. I don't know you peeps but based on your writings what surprises me is how well you seem to take things.
I don't want to sound like a jerk and repeat "man I'm sorry, god that's awful etc" but life isn't fair sometimes. I hope you all get better and don't let people turn you down. That white van is awesome!
English isn't my language so hopefully my message came through.
I don't want to sound like a jerk and repeat "man I'm sorry, god that's awful etc" but life isn't fair sometimes. I hope you all get better and don't let people turn you down. That white van is awesome!
English isn't my language so hopefully my message came through.
Yep, came here to post this. How do you find it? I think you're the first person I've met who has it actually. Magic of the internet! I don't find it to be as bad as what tv and stuff makes it out to be. I live at Uni and that's quite hard, since I'm around people all day, every day and I just want to be alone for like, 4/5 days a week usually.
Cerebral Palsy, spastic hemiplegia/hemiparesis caused by a stroke at birth (fucking forceps). Quite mild comparatively and I consider myself extremely lucky to be able to walk and talk. My left toes are essentially paralyzed, I can't wink my left eye on its own and the dexterity in my left hand is far less than that of my right. Though, though years of practise and self inflicted physio, it's become far more useful and I've built up the muscle mass in the left side of my body.
I'm actually bothered more by the side effects than the CP itself. My back sucks from walking around with a limp for 34 years and I suffer from arthritis and bursitis in my right arm from over compensation. Oh and man, spasms can create some mean indigestion and swallowing air. I used to be on antispasmotics, but found the side effects unbearable, so now I just smoke weed to help keep things loose.
I run a small site called Game Forward that started as a journal about my struggles with Game Accessibility issues, but I started writing more about things like serious games, educational games and the like. When I review games, I generally try to point out any inherent accessibility flaws
A good friend of mine (who started as an adversary of sorts lol) runs AbleGamers, which serves as a GA community and they review games based on accessibility alone.
Another runs OneSwitch and works for Special Effect in the UK, which operates The Accessible Gamebase. These are all great resources and I encourage you to check them out and participate.
I'm actually bothered more by the side effects than the CP itself. My back sucks from walking around with a limp for 34 years and I suffer from arthritis and bursitis in my right arm from over compensation. Oh and man, spasms can create some mean indigestion and swallowing air. I used to be on antispasmotics, but found the side effects unbearable, so now I just smoke weed to help keep things loose.
I run a small site called Game Forward that started as a journal about my struggles with Game Accessibility issues, but I started writing more about things like serious games, educational games and the like. When I review games, I generally try to point out any inherent accessibility flaws
A good friend of mine (who started as an adversary of sorts lol) runs AbleGamers, which serves as a GA community and they review games based on accessibility alone.
Another runs OneSwitch and works for Special Effect in the UK, which operates The Accessible Gamebase. These are all great resources and I encourage you to check them out and participate.
I have aspbergers, suffer from severe bouts of depression, have terrible anxiety, may or may not have adhd (as supposedly symptoms similar to it result from aspergers), and I'm a, hopefully, recovered bulimic.
Fortunately, as I've been eliminating sugars and bread(supposedly aspergers is an autoimmune disease, speculated by chris kresser and others in the paleosphere) it seems my problems have been alleviated to some degree however anxiety and depression along with food "urges" that lead to the latter two occasionally arise.
I grew up in an urban city where I had trouble fitting in at school until about second grade where I worked my way out of special ed class that I was in due to being kicked out of other, more suburban, private like schools(I refused to take my Ritalin at five and had a temper tantrum). I made my first two friends, who helped me through the next few years but it was still always a distanced, competitive relationship(they didn't have good family relations which made it hard for them to be too close and they were asian, we both were competitive in school, especially math, I won). One thing they taught me through back and forths was how to "shit talk", and I supposed this helped me to critically analyze individuals. So, I learned to adapt and survive through being very analytical and "learning" other peoples emotions. This came in handy in high school where I was at first bullied but then became one of the most popular "white" kids due to being able to "talk shit" and was generally laid back.
That was seventh grade, then I was transferred to another private school in the lesbian capital of the world, the epicenter of yuppiness, where I was completely culture shocked and couldn't fit in with anyone. I also found out, through a kind, itinerant psychologist, that that "something which always made me "different" was aspergers". I was depressed for a while, probably because I was young, I felt like a retard, I felt all the pride I had built up disappear because I had no reason to feel that I could ever be as good or better than someone because I'd always be disabled.
Well, that carried mostly through high school back in the city, although, I did regain some confidence through new friends, although there was more bullying.
After high school, I became a dishwasher for five years, broke down recovered, met a great kitchen staff, fell in love with food, and now I'm at the CIA in Hyde Park hoping to make something of myself, which I always said I would when people laughed at me growing up.
EDIT: Oh yeah if anyone would like to meet up I'd love to see the city, I really want to try some good bbq, if there is any in New York, and I promise you won't know I have aspergers(I look people right in the eyes but I do have problems with not speaking my mind like I tell people sometimes they're full of shit and laugh).
Fortunately, as I've been eliminating sugars and bread(supposedly aspergers is an autoimmune disease, speculated by chris kresser and others in the paleosphere) it seems my problems have been alleviated to some degree however anxiety and depression along with food "urges" that lead to the latter two occasionally arise.
I grew up in an urban city where I had trouble fitting in at school until about second grade where I worked my way out of special ed class that I was in due to being kicked out of other, more suburban, private like schools(I refused to take my Ritalin at five and had a temper tantrum). I made my first two friends, who helped me through the next few years but it was still always a distanced, competitive relationship(they didn't have good family relations which made it hard for them to be too close and they were asian, we both were competitive in school, especially math, I won). One thing they taught me through back and forths was how to "shit talk", and I supposed this helped me to critically analyze individuals. So, I learned to adapt and survive through being very analytical and "learning" other peoples emotions. This came in handy in high school where I was at first bullied but then became one of the most popular "white" kids due to being able to "talk shit" and was generally laid back.
That was seventh grade, then I was transferred to another private school in the lesbian capital of the world, the epicenter of yuppiness, where I was completely culture shocked and couldn't fit in with anyone. I also found out, through a kind, itinerant psychologist, that that "something which always made me "different" was aspergers". I was depressed for a while, probably because I was young, I felt like a retard, I felt all the pride I had built up disappear because I had no reason to feel that I could ever be as good or better than someone because I'd always be disabled.
Well, that carried mostly through high school back in the city, although, I did regain some confidence through new friends, although there was more bullying.
After high school, I became a dishwasher for five years, broke down recovered, met a great kitchen staff, fell in love with food, and now I'm at the CIA in Hyde Park hoping to make something of myself, which I always said I would when people laughed at me growing up.
EDIT: Oh yeah if anyone would like to meet up I'd love to see the city, I really want to try some good bbq, if there is any in New York, and I promise you won't know I have aspergers(I look people right in the eyes but I do have problems with not speaking my mind like I tell people sometimes they're full of shit and laugh).
Hey man, have you ever had any treatment for your spastic diplegia. I have the same condition, have had several surgeries to improve my condition and recently had an amazing surgery in February that has changed my life in just 6 short weeks. Happy to talk to you about it. From your post it sounds like you are from the UK. Lots of families bring their kids to the states to have this surgery - it has completely eliminated my spasticity and I am in PT now learning how to use my more able body. You can read it about here - http://www.stlouischildrens.org/content/medservices/aboutselectivedorsalrhizotomy.htm
Same to you man - I recently had surgery to "fix" my spastic diplegia. It has so far produced amazing results. Hit me up if you want.
Lots of CP folks in here. I have spastic diplegia and have been working on "curing/fixing" it for years. I recently had a 4th surgery that has been amazing and has dramatically changed what I can do. I am all about letting other folks know about it because it's not as well known as it should be. I am blogging about it and you can check that out here if you want (mainly targeted to the other people with CP in the thread). www.slayingspasticity.com
echoshifting
Banned
I can relate to this so much. You just described my life.
I have Marfans Syndrome, which means a dissecting aorta (which is under control with beta blockers), crap eyesight, had to have surgery on my pectus excavatum, terrible muscles and joints. A heap of other symptoms too, but those are the major stuff. I'm also 6'7" which cool but then it means finding trousers that fit is difficult.
It's a pretty big inconvenience, but medicine has improved so much that at least it won't kill me!
It's a pretty big inconvenience, but medicine has improved so much that at least it won't kill me!
JeTmAn81
Member
Hey man, this has been a big issue in my life. I'll grant you I've never gotten the diagnosis of Marfan's, but the possibility of it has haunted me for several years. I just have so many signs for it that it's maddening:
1. Pectus excavatum (fairly severe, corrected with I think the Ravitch procedure at age 17)
2. Bad eyesight (-8.5 diopters in one eye, -10 in the other). This runs in my family, with the next worst eyesight in my family being -8.5 diopters.
3. Mild scoliosis - I think it's like a 10-15 degree curve, so it hasn't had a huge impact on my life so far. Also runs in my family, I have a cousin with scoliosis so bad it had to be corrected with surgery.
4. Flat feet - pretty sure I have these.
In spite of all this, so far the doctors I have seen don't think I have Marfan's. I'm age 30, 6'4", weigh around 160. They have characterized me as "Marfanoid", but I've had the slit-lamp eye examination for detaching retina and they didn't find anything on that (though the opthamologist charged me the equivalent of $750/hr to look at my eyes for 5 minutes), I've had my arm and leg length checked and that's just borderline, and I've had I think three echocardiograms now, all showing a perfectly normal aortic root (I think they check the descending one). I had to ask for those because no doctor ever proposed that I needed one. They're expensive, too. I think I got checked for the soft (or was it high?) palate as well, and I think I had that.
I am on a beta blocker, though that's for somewhat high blood pressure. Been on it for a few years. My uncle on my mother's side also had high blood pressure in his 20's and started medication for it. But anyway, the fact that I've got so many things that point to this potentially very scary condition but have not actually gotten a diagnosis just drives me nuts. I have had anxiety about my heart for several years, and it can even be uncomfortable for me to sleep on my left side because of that.
I think my muscles and stuff are ok, though I'm not sure how I would know if there was an unusual problem with those. My ankles do tend to crack a bunch, but that might be because I've just gotten in the habit of always cracking them. And lately my eyesight has seemed to worsen. But that could just be astigmatism which apparently runs in the family getting worse around this age. My mother said that happened to her. However, I've also had an increase of floaters lately which is really distracting. I've been checked by the eye doctor recently who said my eyesight hadn't changed at all, which I know can't be true because I only went in to see him because I'd noticed a change in my ability to see the computer monitor clearly at work.
Just the fact that I'm aware of the possibility, however faint, of a dissection in the future pretty much means I will be safe from it, since the surgery to correct that works really well as long as it happens before the dissection! But for a while it was really like living as if I had a ticking time bomb in my chest, and not really knowing what was going to happen. I'm planning on finally getting some genetic testing later this year to hopefully rule it out for good.
Girlfriend lost her leg up to her thigh in a pedestrian to car accident we both got in. She's having a hard time with balancing and learning to walk again with her prosthetic. I have foot drop (nerve palsy) on my right leg and was not able to lift my ankle at all for a while. It's now about half way recovered, after almost 2 years, but the numbness is irritating. I wish we could switch places.
JeTmAn81
Member
I'm in a somewhat similar situation with my wife. Her chronic pain issues (concentrated in the neck, back and hands) have prevented her from driving or working for the last couple of years. Even doing something as simple as playing Draw Something for more than a few minutes can give her debilitating pain for days. So she basically can't do any of the activities that really made her happy, since they all involved working with her hands.
It sucks to go through, and it leads to a mental adjustment where you can't assume that they/you will ever be able to do things as they once could. That might happen someday, but I've found that living like everything's going to go back to normal leads to unfair expectations. Hopefully you guys will be able to adjust to the point where you can appreciate what you can still have without holding on too much to how things used to be. Life can still be good, in spite of challenges.
It was pricey but I had insurance to cover some of it and I have kicked in the rest. Today is my 6th week anniversery from having the surgery and it has changed my life. Dramatically. There is a group on facebook for the treatment and a lot of people from the UK on in the group. There are 2 hospitals in the UK that doing it but getting funding for it is hard from what I read. If you are interested feel free to ask me anything. I am all about spreading the word about this in case I can help someone make a decision on if it might be right for them.
Well you are definitely well informed on the matter! More so than me!
You do seem to have most of the characteristics of Marfans. We definitely share a lot of traits - pretty much everything you mentioned, though I don't have flat feet. I would be inclined to say you have it but I'm not a medical professional and if various doctors disagree with me then trust them, I guess. I was not familiar with "Marfanoid" so maybe you have that instead. As for your genetics test, I have to go for one soon as well, to check if I'm carrying it and capable of passing it on. I don't plan on having kids for 10+ years anyway!!
But having it isn't so bad when you know you have it. As long as you live your life in moderation - healthy-ish diet, beta blockers, not much exercise and NO contact sports - you would be fine. People normally only find out when it's too late. So as you say, there is no need at all for you anxiety.
When I mentioned bad muscles and joints, if I was going to go for a run I would probably pull a muscle and have terribly sore knees and ankles afterword. This is particularly evident when playing indoor football. (Since I had surgery on my pectus excavatum last August, I haven't done any exercise! But I don't do much anyway - 1 hour of casual soccer a week was the height).
I suffered from floaters when I was about 4-8 but they've gone now.
My medication is Tenormin which is a higher quality version of Antenol(sp?), btw.
I'm aware this is a terribly structured response, jumping from point to point.
JeTmAn81
Member
I assume you are on SSI. So far I have not had to tangle with that but am possibly anticipating it since my wife is not getting any better and taking care of her has been very expensive. Not looking forward to trying to prove the fact that she can't work when she has never even gotten a diagnosis for her chronic pain issues (no, not fibromyalgia). Feel free to share any stories of your interactions with them.
echoshifting
Banned
Oh ho ho ho yes I have. Yes sir.
My SSD benefits expired in spring of 2008 due to my age and the number of total hours I had worked. Unfortunately, we had no fucking idea what was going on at that point. We had only just determined that it was a neurological disorder, rather than a GI issue. Most of the workup I had at that time was on my GI system, and everything pointed to healthy/normal.
Social Security has absolutely refused to hear any evidence gathered after that date. According to them, there is no way to demonstrate that the condition I am currently grappling with is the same condition I had before my benefits expired. So all of the doctors, all of the tests, all of the witnesses (including the work placement expert the administrative law judge requested for the hearing)...everything I have which could serve to prove my disability has effectively been ignored.
I've been battling them for about four years now. This past January I finally gave in and agreed to let my parents help me hire a better attorney. I now have one of the best litigators in the state working my case, and he has no doubt that we will eventually win (though there could still be another year, at least, before it is resolved). There is no legal basis for their decision to ignore all of the 2008+ evidence, but because the "legal system" within SSA is completely independent from the actual judicial system, they get away with shit like this all the time.
Did you know that the administrative law judge you see at the highest level of appeal within SSA isn't actually a real judge? It is a lawyer appointed by SSA to help decide an appeal, and yet when you go in there, they put on a big show to make it look like an actual court proceeding. It's all smoke and mirrors.
Fortunately, once the ALJ turns you down you can appeal to an actual court, which is what we're doing right now. The bad news is that if you win that appeal, it just resets the process of going in front of an ALJ and proving your case. I am confident it will go better, though, with a more powerful and influential law firm behind me, but it saddens me greatly to have had to go to these lengths when it is overwhelmingly obvious to anyone who spends more than an hour with me that I am completely disabled. Besides, even if they reject it again, we can make the same appeal to an actual court. I don't think that will be necessary, though, and neither does my attorney. At some point they typically decide it is costing them more to fight your claim than to pay it.
My lawyer looked up the rate at which the ALJ who reviewed my case accepts/rejects claims...year after year, they line up exactly with national averages. Statistically, this is basically impossible, but there it is. These guys have a quota and they stick to it. Pretty easy to turn down a young guy with expired benefits, unusual symptoms and a mediocre attorney. If that's not a corrupt and completely fucked up way to manage something so important to some of the most vulnerable people in our society, then I don't know what is.
Psychoward
Banned
I had PSC which led to a liver transplant (it's been almost two years now) and Chron's disease. I recently had a relapse of Chron's, so I had to switch from imuran to Remicade, hoping for the best.
I'm a stutterer. Some times I can speak fluidly without a problem, other times I can't say a word. :/ What's weird, usually it's a single word - everything else can go through my throat, but that one single word can't. Recently I had a presentation at work; everything was going better than I expected (because of my issue I'm afraid of every public speech) and then came "a word" - that random single word that I had to say (it was a name of the product I was presenting), but couldn't say and thus was stuck with the presentation. And then came the pressure and even more stuttering :/.
Needless to say, that affected my social life. I hate speaking in public or to strangers (which in turn helped me become more independent from others, but that's the only positive side effect), I am afraid of meeting new people, and overall it turned me into a self-conscious shy and silent guy. When some people think of you as a mentally disabled (yes, I've heard that few times), just because you have problems with speaking or sometimes need to use your hand or foot to get a rhythm, it can really hit you.
I'm planning to go to a therapy this holiday. I attended one once, when I was a kid (About 6 or 7yo), but I think I was too young back then to take it seriously.
What's funny, I never stutter when I'm cursing.
Needless to say, that affected my social life. I hate speaking in public or to strangers (which in turn helped me become more independent from others, but that's the only positive side effect), I am afraid of meeting new people, and overall it turned me into a self-conscious shy and silent guy. When some people think of you as a mentally disabled (yes, I've heard that few times), just because you have problems with speaking or sometimes need to use your hand or foot to get a rhythm, it can really hit you.
I'm planning to go to a therapy this holiday. I attended one once, when I was a kid (About 6 or 7yo), but I think I was too young back then to take it seriously.
What's funny, I never stutter when I'm cursing.
I'm a stutterer. Some times I can speak fluidly without a problem, other times I can't say a word. :/ What's weird, usually it's a single word - everything else can go through my throat, but that one single word can't. Recently I had a presentation at work; everything was going better than I expected (because of my issue I'm afraid of every public speech) and then came "a word" - that random single word that I had to say (it was a name of the product I was presenting), but couldn't say and thus was stuck with the presentation. And then came the pressure and even more stuttering :/.
Needless to say, that affected my social life. I hate speaking in public or to strangers (which in turn helped me become more independent from others, but that's the only positive side effect), I am afraid of meeting new people, and overall it turned me into a self-conscious shy and silent guy. When some people think of you as a mentally disabled (yes, I've heard that few times), just because you have problems with speaking or sometimes need to use your hand or foot to get a rhythm, it can really hit you.
I'm planning to go to a therapy this holiday. I attended one once, when I was a kid (About 6 or 7yo), but I think I was too young back then to take it seriously.
What's funny, I never stutter when I'm cursing.
Sounds like OCD to me. I've had problems like this before.
I'm a stutterer. Some times I can speak fluidly without a problem, other times I can't say a word. :/ What's weird, usually it's a single word - everything else can go through my throat, but that one single word can't. Recently I had a presentation at work; everything was going better than I expected (because of my issue I'm afraid of every public speech) and then came "a word" - that random single word that I had to say (it was a name of the product I was presenting), but couldn't say and thus was stuck with the presentation. And then came the pressure and even more stuttering :/.
Needless to say, that affected my social life. I hate speaking in public or to strangers (which in turn helped me become more independent from others, but that's the only positive side effect), I am afraid of meeting new people, and overall it turned me into a self-conscious shy and silent guy. When some people think of you as a mentally disabled (yes, I've heard that few times), just because you have problems with speaking or sometimes need to use your hand or foot to get a rhythm, it can really hit you.
I'm planning to go to a therapy this holiday. I attended one once, when I was a kid (About 6 or 7yo), but I think I was too young back then to take it seriously.
What's funny, I never stutter when I'm cursing.
My ex-gf has a stutter, it real effects your social life. She never stuttered around me. Drove her 400 miles to get that inner ear piece that helps reduce it by giving you an echo when your talking. Have you looked into that?
I believe it was called speech easy. http://www.speecheasy.com/ . It is very pricey and providers are hard to find. But it does work.
I was friends with a girl who stuttered in highschool, she would get so self conscious and frustrated at the same time.I'm a stutterer. Some times I can speak fluidly without a problem, other times I can't say a word. :/ What's weird, usually it's a single word - everything else can go through my throat, but that one single word can't. Recently I had a presentation at work; everything was going better than I expected (because of my issue I'm afraid of every public speech) and then came "a word" - that random single word that I had to say (it was a name of the product I was presenting), but couldn't say and thus was stuck with the presentation. And then came the pressure and even more stuttering :/.
Needless to say, that affected my social life. I hate speaking in public or to strangers (which in turn helped me become more independent from others, but that's the only positive side effect), I am afraid of meeting new people, and overall it turned me into a self-conscious shy and silent guy. When some people think of you as a mentally disabled (yes, I've heard that few times), just because you have problems with speaking or sometimes need to use your hand or foot to get a rhythm, it can really hit you.
I'm planning to go to a therapy this holiday. I attended one once, when I was a kid (About 6 or 7yo), but I think I was too young back then to take it seriously.
What's funny, I never stutter when I'm cursing.
Everyone's stories in here has been interesting to read, puts my myopia and depression in perspective, for sure. Thanks to all who have shared. And anyone who hasn't read echoshiftings epic tale of endurance and shit medical practitioners should certainly do so.
Lionheart1827
Member
I wouldn't really call this an actual disability since I'm not actually disabled, but it has affected my life ever since it started in a huge way. I've been dealing with some kind of specific anxiety/phobia in regards to worrying about getting nauseous and sick in unfamiliar/public/contained places for about 3 years now. Most of my life I had an iron stomach, but one night when out with a friend drinking I said to myself "A lot of people get sick when they drink, but I never really do." And then just like that something in my brain snapped and I started to think about being nauseous and nearly got sick.
Ever since then, my life has been completely changed. Every day I worry about being somewhere and end up thinking of making myself sick/nauseous. I have gotten way better than when it first started(was afraid to leave me house and even eat in my house without feeling completely nauseous). Nowadays, I can manage having a normal life, but I have a hard time doing things I love. I always worry about eating at places like restaurants due to this issue, going to meetings at work, taking the train in the morning, movie theaters, any contained places that I'm not comfortable with or dont feel like I can "escape" easily are trouble spots to me.
I've started seeing a psychotherapist about 2 months ago and I see her once a week. I'm not sure if its helping me though. Since this has been going on for so long, if I ever feel like I'm making progress with it and then I have a bad day/s, it depresses the shit out of me. I was considering anti-anxiety medication, but I was always worried about side effects and addiction. I am in constant worry every day about how my day is going to go and anything I would normally look forward to, I cant get happy about it because of this anxiety/worry all the time. I'm still unsure on what I want to do in regards to medication though, especially if some of the side effects include nausea. I just wish I can go back in time 3 years ago and not go out that night so I could be a normal person again. A lot of times the littlest every day body pain will make me nervous and start to worry. People will sometimes tell me not to think about it, but this worry has ingrained itself so well into my life that its as "normal" as the sky is blue or the earth is round. I just want some relief so I can live my life the way I want to.
Ever since then, my life has been completely changed. Every day I worry about being somewhere and end up thinking of making myself sick/nauseous. I have gotten way better than when it first started(was afraid to leave me house and even eat in my house without feeling completely nauseous). Nowadays, I can manage having a normal life, but I have a hard time doing things I love. I always worry about eating at places like restaurants due to this issue, going to meetings at work, taking the train in the morning, movie theaters, any contained places that I'm not comfortable with or dont feel like I can "escape" easily are trouble spots to me.
I've started seeing a psychotherapist about 2 months ago and I see her once a week. I'm not sure if its helping me though. Since this has been going on for so long, if I ever feel like I'm making progress with it and then I have a bad day/s, it depresses the shit out of me. I was considering anti-anxiety medication, but I was always worried about side effects and addiction. I am in constant worry every day about how my day is going to go and anything I would normally look forward to, I cant get happy about it because of this anxiety/worry all the time. I'm still unsure on what I want to do in regards to medication though, especially if some of the side effects include nausea. I just wish I can go back in time 3 years ago and not go out that night so I could be a normal person again. A lot of times the littlest every day body pain will make me nervous and start to worry. People will sometimes tell me not to think about it, but this worry has ingrained itself so well into my life that its as "normal" as the sky is blue or the earth is round. I just want some relief so I can live my life the way I want to.
Thanks for posting this man
TheyTookOurJobs
Member
I suffer from Bipolar disorder.
I've been keeping it under pretty good control with medication, but when something major happens like a job loss, or I need to readjust my medication, all hell breaks loose and a bunch of bad things happen ranging from temporary schizophrenia to rage to anxiety to paranoia.
I had a few major episodes in the past 8 months that have had to have me preempt my job hunt.
I still have some anxiety lately. I keep thinking I'm going to lose my possessions like my iPod and phone, etc.
I've been keeping it under pretty good control with medication, but when something major happens like a job loss, or I need to readjust my medication, all hell breaks loose and a bunch of bad things happen ranging from temporary schizophrenia to rage to anxiety to paranoia.
I had a few major episodes in the past 8 months that have had to have me preempt my job hunt.
I still have some anxiety lately. I keep thinking I'm going to lose my possessions like my iPod and phone, etc.
ElectricThunder
Member
27, had many bad ailments in my time, but the last nearly 8 years have had me with an undiagnosed issue that has kept me from being able to drive all this while on account of not being able to face any sort of "harsh light" without suffering searing pain that'd leave me a massive danger to myself and others on the road.
Never could qualify for any sort of proper disability, been jobless for a long time now, not in a pedestrian-oriented area, (GA), the last attempt at medical understanding ended up an incredibly painful gauntlet of questionable tests that amounted to nothing more than a set of glasses that didn't even do anything and they wanted $$$$'s for the service of putting me through the ringer. Anybody who as been through the merry go round that is "let's test for random things until we maybe find something, start up a tab on the fellow!" can see the end game there, and as a poor lot....yeah...maybe if I was in another country with healthcare intended to keep the population in good shape as oppose to the profit margins...
On the flip side, not even so much as a damned cold all this while.
Family was sort of supportive, but had been imploding horribly lately and oft devolves into fights and heaping pressure on me to just "snap out of it" or shit like " just ignore the pain, real simple, don't worry about other people on the road"---all due to the rapidly worsening financial situation of said family that is not beget of disability, just people acting incredibly fucking stupid, selfish, short-sighted, etc while trying to bandy about the economy at large as the core of allll the problems with me just being the worthless son that's never amounted to anything special as a big shot or some such.
I'm dogged to stay alive and keep at it out of sheer rage, hate, things I'd like to do to make things better in the world in various ways, etc---but it is hard doing and I've been thoroughly derailed time and again by my very unhappy, strife-ridden, updated-crisis-of-the-week family slate of doings-----really not an environ to live well, let alone trying to learn things from scratch when you've yet to discover a particular knack for the lot of it. It really fries me that people whom KNOW I'm generally of the workaholic disposition on account of, you know, the entire past prior to getting stuck with this mess...can come at me with charges of some kinda thinly-veiled laziness or some other "walk it off"'ish nonsense. : ( I want to fucking work and achieve things damn it!
Single, with one or so good local friends left---but venting and such is a limited thing by far.
Never could qualify for any sort of proper disability, been jobless for a long time now, not in a pedestrian-oriented area, (GA), the last attempt at medical understanding ended up an incredibly painful gauntlet of questionable tests that amounted to nothing more than a set of glasses that didn't even do anything and they wanted $$$$'s for the service of putting me through the ringer. Anybody who as been through the merry go round that is "let's test for random things until we maybe find something, start up a tab on the fellow!" can see the end game there, and as a poor lot....yeah...maybe if I was in another country with healthcare intended to keep the population in good shape as oppose to the profit margins...
On the flip side, not even so much as a damned cold all this while.
Family was sort of supportive, but had been imploding horribly lately and oft devolves into fights and heaping pressure on me to just "snap out of it" or shit like " just ignore the pain, real simple, don't worry about other people on the road"---all due to the rapidly worsening financial situation of said family that is not beget of disability, just people acting incredibly fucking stupid, selfish, short-sighted, etc while trying to bandy about the economy at large as the core of allll the problems with me just being the worthless son that's never amounted to anything special as a big shot or some such.
I'm dogged to stay alive and keep at it out of sheer rage, hate, things I'd like to do to make things better in the world in various ways, etc---but it is hard doing and I've been thoroughly derailed time and again by my very unhappy, strife-ridden, updated-crisis-of-the-week family slate of doings-----really not an environ to live well, let alone trying to learn things from scratch when you've yet to discover a particular knack for the lot of it. It really fries me that people whom KNOW I'm generally of the workaholic disposition on account of, you know, the entire past prior to getting stuck with this mess...can come at me with charges of some kinda thinly-veiled laziness or some other "walk it off"'ish nonsense. : ( I want to fucking work and achieve things damn it!
Single, with one or so good local friends left---but venting and such is a limited thing by far.
Mohonky
Member
Yeh. I am agoraphobic. Spent a few years totally locked up in my own house. Now I can get out and about but still not 100%. Took me 4 attempts to leave the house and go down to my local hobby shop yesterday.
When I wasn't really able to leave the house at all I had to go down to the local Centrelink to hand in fortnightly forms, I tried explaining to them what that actually meant for me. They never got it. When I had to see their psychologists it was always 'so when do you think you'll be back working again.' If I had two broken legs I could have answered that question, but what they expected in an answer was beyond me.
What used to piss me off was how easy it seemed to be for people to live off government hand outs and just go surfing or bumming around everyday; but for me, it seemed like dealing with their shit was harder than dealing with my own.
Keep up the fight, don't ever lose hope. I'm rooting for you and try your best to keep faith, things will get better.
PumpkinPie
Banned
Not sure if it counts, and definitely not as bad as a lot of people who have posted so far but I have chronic liver disorder, expected lifespan (without surgery) is 9-10 years from diagnosis, I'm at about 7 years now. I work part time but I don't go out of the house aside from going to work, I get too tired and don't have a lot of patience with people.
I honestly don't know if I would take the surgery to save myself if the time came, after spending the best part of 10 years not being able to go out I think it would be better used on someone else. I probably sound miserable but I'm not particularly sad about it, I don't have a wife or kids so I'm simply thinking that it would be more practical for the surgery to go to someone else. Gotta look at the bigger picture.
EDIT: Wow, OT community. I've never been here before, must have clicked the wrong tab :O
I honestly don't know if I would take the surgery to save myself if the time came, after spending the best part of 10 years not being able to go out I think it would be better used on someone else. I probably sound miserable but I'm not particularly sad about it, I don't have a wife or kids so I'm simply thinking that it would be more practical for the surgery to go to someone else. Gotta look at the bigger picture.
EDIT: Wow, OT community. I've never been here before, must have clicked the wrong tab :O
davidcotton
Member
Hi
40 years. Got the following :-
Blind in right eye (detatched retina from accident whilst 4),
Scoliosis of the spine (had to wear a brace for the back 23 out of 24 hours a day at one point, but not had to for quite some time thankfully).
Two bad knees. Right one was the worst which used to dislocate fairly regularly to the point where I had an op on it at 16. Since then touch wood it's been fine, though it does mean I am relatively limited physically. Left just went one day got it fixed up, then slipped on a patch of ice in town and put it out again.
Asthma.
That said I do a normal working week of 8:30 - 4:30 five days a week. Was lucky enough to get into a disabled boarding college whilst younger and that definetly helped at the time. Since then I've refused to let things slow me down unless absolutley necessary (obviously there are times!)and carry on as normally as possible.
Cheers.
40 years. Got the following :-
Blind in right eye (detatched retina from accident whilst 4),
Scoliosis of the spine (had to wear a brace for the back 23 out of 24 hours a day at one point, but not had to for quite some time thankfully).
Two bad knees. Right one was the worst which used to dislocate fairly regularly to the point where I had an op on it at 16. Since then touch wood it's been fine, though it does mean I am relatively limited physically. Left just went one day got it fixed up, then slipped on a patch of ice in town and put it out again.
Asthma.
That said I do a normal working week of 8:30 - 4:30 five days a week. Was lucky enough to get into a disabled boarding college whilst younger and that definetly helped at the time. Since then I've refused to let things slow me down unless absolutley necessary (obviously there are times!)and carry on as normally as possible.
Cheers.
I had an eye test last week. -24 left eye, -32 right eye. Lazy eye/squint. Pretty much don't use my right eye. I can't read with the right eye even with my glasses.
Can just about force myself into seeing the 3D on my 3DS at the expense of a headache. I play with 3D off because of this (and because 3D is a fad that needs to die).
Can just about force myself into seeing the 3D on my 3DS at the expense of a headache. I play with 3D off because of this (and because 3D is a fad that needs to die
).TheVampire
Banned
Do you ever wonder what would of happened if you didnt sleep that night or drank so much you passed out insted? etc...?
Super-small world. I had this corrected when I was 13 months. I'm 36 now and had to have my pulmonary valve replaced almost three years ago. They were hopeful it would last 10-15 years before I would need it replaced again. I've been very fortunate in that my life has been minimally effected by the condition other than the two surgeries (so far).
JeTmAn81
Member
I had an eye test last week. -24 left eye, -32 right eye. Lazy eye/squint. Pretty much don't use my right eye.
I can't read with the left eye even with my glasses. Can just about force myself into seeing the 3D on my 3DS at the expense of a headache. I play with 3D off because of this (and because 3D is a fad that needs to die
And I thought my eyesight was bad (-8.5 right, -10 left)! Well, my eyesight is bad. But yours is way worse. That stinks. Is there any particular reason why your vision is so poor? I feel like mine has been getting worse lately, even though the optometrist told me it hadn't changed. But text has become difficult enough to read that I now work wearing my glasses instead of contacts (supposed to be better for astigmatism).
Baron_Calamity
Member
That's great. I was doing fine until I had a heart attack two weeks ago. :\ Had two stents put in but that was just an emergency patch.
Next month I'm going to travel to see a cardiologist who specializes in ToF to see if there is anything that can be done to improve the current situation.