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  • #16
    Originally posted by lynnifer View Post
    I guess my experience would be different as it happened entering grade 8. So I still had years to cultivate new friends etc at high school.

    Many did contact me (high school friends) in my thirties and expressed jealousy that I had a career and that they didn't. I imagine this was a time when they were tiring from marriage and raising small children - lol. Now most are almost at the end with their children quickly approaching 18 and at that age, we'll want friends around.

    I still keep in contact with co-workers from age 21 and on - most are on my facebook along with friends from back home. I have this stupid thing in my head where I divide my friends between 'before paralysis' and 'after paralysis.' I'm thankful that I still have contact with so many from before. Still have co-workers from the cop shoppe on my facebook as well.

    Most know that I'm having a difficult time right now and want to be alone ... the hardest part was David leaving after 13yrs. I felt so very alone. That was rough back in 2010 or 09. I've recovered well though. I now find myself at a time (age 43) where I don't really have a need or want to meet new people, especially a partner. I'm exhausted of the same inane questions and the effort it takes. Different for me as well because I'm on long-term disability through an employer so taking home 5x the amount that a person on provincial disability would take home for disabled friends ... meaning they can't do a lot. Others can afford to go the casino and shows all the time - I can't keep up with that. Others are married with careers by this point. Most of my walking co-workers work shift work so impossible to meet up unless it's a work function.

    Plan your life with yourself in mind. What will you do to support yourself? Where do you see yourself in two - five years? Working really does cultivate friends, as well as school. Just because you're getting a settlement doesn't mean you're not capable of working and yay you'll be able to afford school! Some of the best schools in Toronto! There are vent dependent quads around here who own their own business, quads who used to work on Wall Street and changed careers (now that's brave) to voice over work. Quads who letter very famous comics. Psychologists - even doctors around here!

    Being alone and doing nothing will cultivate depression. You need to have an outside thing to keep your mind busy and have something to offer with friends, partners etc.

    There's also political policy .. some advocate work needs to be done in Canada. If First Nations don't pay taxes, I don't think the 'catastropic injuries' should either .. we just generally have more costs and receive less than adequate healthcare as compared to normal Canadians. If they have tuition free as well, with a 65% unemployment rate among disabled people - higher education would help them achieve more graduate jobs (desk type) that require a lot of education. Housing is always a never-ending well of need also.
    Yes I'm sure ending relationships especially one that lasted a long time is very difficult for anyone , a disability and it's many implications only exasperates that I'm sure.sounds like you are at a "good place" with that now, but not with everything sorry to hear that, seems like you have friends that are more than willing to hang out with you from what you say but you're choosing to be alone. I don't pretend to know your circumstances but that may not be the best choice, just like you said not seeing people are getting no leads to what they call "depression" *cough*, but if what you say is true you should take advantage of the fact you have friends that would be there. I also think the more time you spend away from them the less likely things will reKindle

    I actually sort of agree about your theory on taxing, it makes a lot of sense the only thing that conflicts me is the fact that we do put demand on society and the economy accessibility,rehabilitation, caregiver organizations , higher frequency with healthcare etc. I actually wanted to talk about the whole insurance thing, but that's another subject. not everyone gets insurance. I myself don't want to collect ODSP or whatever it is,I fell asleep crashed my own car it's my fault society doesn't have to pay for it, I'm always bitching about how easily we hand out welfare in this country.

    In terms of education I don't have time for that, I'm focussed on reversing/ preventing the paralysis rot for one ( failing ) and try to get into a clinical trial ( highly unlikely ) but if I win this lawsuit I need to be ready to go with the plan Im trying to put together. Physiotherapy, as well as vibration plate twice a day and my diet are almost a full-time job. I do study myself on investing,I am also looking at buying a property guys franchise in Thornhill, with my mother ( I buy it, she handles customer service, other than what I can do on my iPad) she owns the district back home with two other people they do well, but the franchisees up here do even better. I'm hoping to set it up so that 10% of our revenue goes to spinal cord injury research ( of my choosing not Rick Hanson Institute!) my mom is close with the guys at corporate she believes that if that gets started most franchises might follow suit so that's exciting.

    The biggest thing is being an actual soldier as in infantry Man is out, a side job in professional fighting, or career as Coast guard, fireman is obviously out those were the dreams, dreams die for everyone from a simple injury to the knee or lack of effort and determination! But even the more realistic options a construction worker, electrician, trades etc even a superintendent are all out, handson jobs in general really. The leaves out hands-on education and more of the "higher"education which is way not for me. I've had some major Head injuries no permanent damage, but learning disorders we're obvious, especially affecting attention dramatically were painfully obvious. I need hands-on education as well as work and of course those are outI do not do well with Jobs that vast majority involves paper, computers or God for bid customer service. I'm constantly reading and studying, but half the time I don't even remember The sentence I just read despite having an above average memory after my psych evaluation or whatever that test was called, i'm trying to force it on myself, it doesn't work for me. Having said that all of this is irrelevant, and will only become relevant if I can live in relative independence and dignity by taking care of myself and at least make a slight majority of my own decisions without having to ask. Gain the function to be able to do something I could actually do efficiently, fits the person I am and at least slightly enjoy. Which is why I'm doing what I'm doing.

    As for hobbies and this and that people constantly say well you haven't tried it so you don't know, but for someone that truly knows themselves that is untrue. I know and knew that rugby is not for me, especially quadriplegic rugby where no matter how much I practice, work I will always be a 1 point , Basically a pylon for low cervical injuries or incomplete injuries that Will actually show great im provement's from practising, That's not sport to me. But it's the only sport that's within my individual disabilities parameters, I looked into and tried the hand cycling of course my goddamn right arm can't sustain anything like that even with the electrical assisted, it's hard to explain but my right shoulder is literally not even in the joint properly,and lacks the stabilizing muscles so after two minutes is in pain which I can tolerate for a time but the grinding and obvious unnatural motions will do damage the upper body FES even gives me trouble. The inability to pronate my right arm also causes major problems for any of these activities that is one of the smallest functions that I put so much effort into recovering with no luck you think pronation doesn't mean anything well I can assure you when it comes to arm and hand function every little Flickr even 2% tricep function is night and day. my life would be very different if I had the same function as my left arm far from truly independent but different for sure. Having said that, again all of this is illrelevant because as it stands with how I am I need someone to help me transfer to and from the bike, wheelchair and help me with various other things throughout the day, caregivers don't come to do that, I can't nor would expect my mom to do that and everything else she already has to do. And I don't have the money to pay for everything plus a DSW to help me with activities and take me out!

    And like you explained I can't really afford to go to concerts/ shows all the time ( which are the best most realistic options for me to do now), although sometimes I usually do when I shouldn't, not a huge sports fan but again too expensive, and I don't really have anyone to go to the bar, restaurant, or movie theatre on a regular basis anyways.

    I'm not making excuses this is the reality, so what I am trying to do, is regain the ability to be able to do these kind of things on my own, be able to do something without having to rely on somebody else because they all have their own schedule can't expect someone to be there on a regular basis or preferably on a daily basis to go for a bike ride together and help me in, hit up the show, go to a restaurant, go to the gym etc. I understand this is hard for a few incompletes/ low cervical or paraplegics understand but you can pretty much handle everything on your own, you just throw yourself in whatever you need to, open your own doors, roll over a few steps, you need to grab something you grab something, drop something you pick it up ( uncountable other examples ) you likely don't run into things were a spasm put you in a position where you can't drive your chair,or worse completely fall out of it like a limp noodle turned into a fish out of water, have a full leg bag you can't drain, have dysreflexia that you can't diagnose or resolve,can't even get to your meds/ tools in your backpack etc etc.

    My cousin and her friend my friend as well, are coming up tomorrow I live in a nice area of Toronto now we're going to go out for lunch, I have my priorities but I always go out any chance I get with a friend, and when it happens I make sure to put everything aside and enjoy it as much as possible and hopefully leave a good impression, so it happens again many of times I have just pretended I was full when really I was starving because I forgot my feeding cuff didn't want them to to feed me, many of times I have pissed my pants had severe dysreflexia, risking damage because I didn't want to ask for my leg bag to get drained and numerous examples of this just so it seems as normal and carefree as possible, so I don't put any burden on them as I said that doesn't sit well with me, but also I hope if everything goes well and it's fun they will comeback want to do it again...

    PS I'm just curious as to how a quadriplegic could be a doctor, how would they even do a physical for one thing. Examine someone body/ problem what do they do say "can you lean over so I can see please" and then try to examine with hands and arms that have no sensation,and fingers that won't open. must greatly affect how many patients they get. Then again I seen C-5s incompletes that function similar to paras, and one that fully recovered walks around like nothing happened. C6-8 almost always have great arm function.
    Last edited by JamesMcM; 05-31-2016, 03:54 PM. Reason: lots of mistakes, unreadable

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    • #17
      PS I'm just curious as to how a quadriplegic could be a doctor, how would they even do a physical for one thing. Examine someone body/ problem more what do they do can you lean over so I can see please and then try to examine with hands and arms that have no sensation, and fingers that won't open. must greatly affect how many patients they get. Then again I seen C-5s that function similar to quadriplegics, and one that fully recovered walks around like nothing happened. C6-8 almost always have great arm function.
      You might want to read the long thread about Roger's son Brian on the New SCI forum for the story of his journey through medical school and now into practice.

      I know a number of physicians who have tetraplegic SCIs. Certain specialties are probably more attractive to and practical for someone with an injury at this level...for example radiology, or even rehabilitation medicine, but of course the person must go through training in all areas in medical school. Some of these people were already physicians before they had their SCI.

      One of my clients who was a vascular surgeon before his SCI went back to do a residency in internal medicine after his injury. He practiced for a number of years as a primary care physician, and had a nurse practitioner in his office who did most of the physicals and other things that required manual dexterity, but he made all the decisions and recommendations for care, medications, disease management, etc. etc. etc. It can be done if someone is very determined.

      (KLD)
      The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

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      • #18
        Originally posted by SCI-Nurse View Post
        You might want to read the long thread about Roger's son Brian on the New SCI forum for the story of his journey through medical school and now into practice.

        I know a number of physicians who have tetraplegic SCIs. Certain specialties are probably more attractive to and practical for someone with an injury at this level...for example radiology, or even rehabilitation medicine, but of course the person must go through training in all areas in medical school. Some of these people were already physicians before they had their SCI.

        One of my clients who was a vascular surgeon before his SCI went back to do a residency in internal medicine after his injury. He practiced for a number of years as a primary care physician, and had a nurse practitioner in his office who did most of the physicals and other things that required manual dexterity, but he made all the decisions and recommendations for care, medications, disease management, etc. etc. etc. It can be done if someone is very determined.

        (KLD)
        Does he lose his surgeon status? As I said i've seen C-5 function paraplegia, C6sand down no doubt, I just imagine that a certain degree of arm function is necessary to be a doctor of any kind is all. or are there c2s no arm function out they're diagnosing people? I've met a quad he's a fully recovered quadriplegic hands are fine and I couldn't see him getting licensed to be a surgeon with his medical history, not that he'd try to or need to As a writer, and on a medical board he does well, and I think his passion lies else where. was fully paralyzed at frist, mind you he was a NHL player before so his willpower , Determination and exercise knowledge and obviously incomplete diagnosis is what led him to recover. I wasn't in any means undermining it or saying that it was impossible, you provided exactly what I wanted to know The physical work is done by someone else, I assumed as much but just didn't want to say, or that if that was allowed. I would just be curious as to how certain diagnosis would be done, i'm assuming nurse practitioners can't diagnose for example a cancerous growth differentiating between cyst or any of the numerous possibilities, I just wonder if the nurse would give the play-by-play to the doctor and the patient gets the full description haha kind of a funny thought, usually doctors at least in my experience are very calm, collect, and quiet at worst say yeah I'd like you to get that checked out. Radiology, rehabilitation medicine make sense seem like the perfect choicesimaging in general make a lot of senseto be "practical". Spent some time working in the environment, step dad is onenot to mention injured myself way too much, and spend a lot of time with doctors even before my injury. I know nothing don't pretend to and don't care to not even remotely my cuppa tea, I just have a good understanding of patient to Dr. protocol, and how hands on ( in an awful often gross way) the job can be some time only because of unfortunate first-hand experience throughout life.

        becoming a physician in any field ( some more than others obviously ) requires a lot of educational determination for anyone, good work ethic and true passion towards it I would imagine is necessary couldn't see how a big paycheck alone is enough motivation. Wouldnt be a very good doctor anyways if that was the only inclination. Obviously a disability would make more hurdles, to get around. Hope he didn't want to be a surgeon ( I don't like when it becomes impossible for people to get to their goals or follow their truest interests by a simple bump on the spinal cord, in fact I detest it ) nonetheless Good for them.
        Last edited by JamesMcM; 05-27-2016, 07:59 PM.

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        • #19
          I am lucky in the sense that I was older (44) when I got hurt. My friends have remained with me thru all of the rough times. Now that some have retired, I see them more often than ever. Very grateful in that respect.

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          • #20
            I am just turning 55 and have been crippled since 2007. I have full function but can relate. To JamesMcM. I cannot sit very long which you would think is an excuse because I should be able to just keep busy. My wife has friends and is a busy active person.
            I just live in my own house like a crippled mouse. Too wiped to even type correctly. I have read James posts before and I live in Lillooet about 3 hours from you. I don't even like riding in a car let alone sitting here. But I do end up on the computer most of my day.
            I am a C-7. I have been on here a long time and feel worse than I did early on while I had some hope of being what ever it is when you get old and not Able bodied.
            I am chiming in tonight because this is one off the few places I feel like I may even fit in.
            I don't really have anyone I would call a friend anymore. Other than the dog and my wife who is still putting up with me and worry's about me because of my not normal behaviour.
            My 2 cents the rest seem to be in pain.

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            • #21
              Originally posted by stevegalliazzo View Post
              I am just turning 55 and have been crippled since 2007. I have full function but can relate. To JamesMcM. I cannot sit very long which you would think is an excuse because I should be able to just keep busy. My wife has friends and is a busy active person.
              I just live in my own house like a crippled mouse. Too wiped to even type correctly. I have read James posts before and I live in Lillooet about 3 hours from you. I don't even like riding in a car let alone sitting here. But I do end up on the computer most of my day.
              I am a C-7. I have been on here a long time and feel worse than I did early on while I had some hope of being what ever it is when you get old and not Able bodied.
              I am chiming in tonight because this is one off the few places I feel like I may even fit in.
              I don't really have anyone I would call a friend anymore. Other than the dog and my wife who is still putting up with me and worry's about me because of my not normal behaviour.
              My 2 cents the rest seem to be in pain.
              It's because we can't keep up! Like I said, they cant just message me and say hey want to go here hey want to make this trip work etc. etc. And if we do plan something often times they have to do things for me that arnt the most attractive of "activities", and as such I come with limitations can't go herewe can't get in, we can't do that no wheelchairs, oh that wouldn't work etc. i'm not a low or incomplete injury that can just do it myself or throw myself where I need to be, actually participate in the shit we do etc.. So naturally they pick up the phone and call someone where none of that is even a issue let alone a problem. sounds like you're not a quadriplegic but your disability is really debilitating sorry to hear that
              Last edited by JamesMcM; 05-31-2016, 09:49 PM.

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              • #22
                Friends after the decline

                I have chronic pain, neuropathy, erythromelalgia, allodynia, seizure disorder, photophobia, vestibular migraines and the list goes on. In short, I cannot walk, I am extremely weak, I have limited hand function, I need special quad gloves to do anything, I need dark glasses and large brimmed hats to go outside, and I use a service dog to alert me to seizures since meds don't do it all. I have a power chair with a big smiley face flag on it so we are seen when we have to go out. It's pretty obvious I am severely disabled. Many people avert their eyes or pull their kids away; that hurts. Friends on the other hand...

                My disability progressed rapidly over the course of ten years or so, but mildly since childhood. I found friends occasionally over the years, but it was tough as a child who wasn't strong like the others and who injured easily; I was the wimp. College was my best time. I performed in a lot of theatrical productions and I felt more normal than ever until the progressive nature of my issues reared their head again. At first people were shocked to see me using crutches and hobbling around, a ghost of my former self. So many people said they would be there for me; they all disappeared. Some people even made fun of me. That really, really hurt.

                Then I lived my years practically as a hermit only leaving the house to go to doctor's appointments or counselling. It was a dark time. Psychologically, I began to improve, but the physical issues continued, though I was still able to work and after a few months I pushed to do another show. It took everything I had to do it, but I just didn't feel that connection with everyone I used to feel. I was ill. There was no denying it. Others saw it too. I wasn't invited to after performance events. I didn't swap numbers with anyone. It was lonely.

                I pushed to keep on keeping on until I had to apply for disability. At this time I had just left an unhealthy relationship, so I lost those connections which were the only ones I had then. I went back to living from doctor's appointment to doctor's appointment with counselling in between. However, even as my physical limitations increased, I found ways to keep hope in my path. I spent as much time with my beloved niece as possible, I found my service dog and faithful companion, and one day out of the blue, a former friend called me. She said she felt compelled to ring me, and would you know, she had been on my mind too. 😃 We chatted for hours and decided to meet. She has seen me progress from AB to power chair in under 7years and she is still here.

                So, though I feel sad when I think about how few people are in my life, I know the ones who still are truly love me no matter what. Sometimes I wish it wasn't so hard, but I do try to focus on the positive. It doesn't always work, but before I go to bed every night, snuggling up to my service dog, I remind her and myself just how grateful I am she is in my life, and I really mean it. 😁

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                • #23
                  Originally posted by Sarafino View Post
                  I wish I could reach through the Internet and give you a hug. I have a degenerative nerve disorder and have noticed it is harder to make friends as my condition deteriorates. Still I have a few. More and more I am only interested in making disabled friends, and I live in a rural area where there are very few disabled people. Most of my attempts to be friendly towards other wheelchair users fail miserably. I am more like a quadriplegic, and most of the chair users here are paras and they don't give me the time of day, ha! Thankfully I recently became friends (acquaintances?) with a woman my own age who is a chair user from MS. I have put a lot of time, money, and heartache into trying to find disabled friends the last few years. I would be seriously tempted to move to some sort of disabled community.
                  My situation sounds similar to yours. It saddens me to hear how many people lose connections or cannot make new ones. As someone else stated, it's not easy for someone to call up and ask if we want to go out; there's planning involved and some days are just too rough to do anything.

                  I am sorry you've had such difficulties making friends. I hear you. I have a few close friends, but I rarely see them with their busy schedules, some advancing in age and some with their own issues. I honestly get overwhelmed quickly from social interaction, so that limits me too. However, it would be nice to have a few friends who really get what I live...it can feel lonely at times. It's complicated by my unique personality. 😜 Finding people who aren't overwhelmed by my health issues AND also who appreciate my cerebral yet funky, dry humour is a challenge.

                  I'm grateful for my service dog, my constant companion, and those few who truly love me. I'm open to making new friends and I hope that will happen, but I'm thankful for what I've got. Severe disability isn't for the faint of heart. It's hard! Sometimes total strangers tell me I'm an inspiration to them. They say that and then many give me that sickly sweet smile and look away. This puzzles me and often I feel put down, though I know many mean well. It's like I'm some foreign species, not someone who lives in their world; it makes me feel like I'm on display. I feel I have to smile, even if I feel awful. It puts me in an awkward position. All I want is to be able to do is be as independent and anonymous as possible, but the girl strapped into the big power chair with the yellow flag, who can barely use her hands and has a cute service dog just can't blend in, you know? Still, I know there's always someone in a worse situation. I try to find happiness everyday. The simple things do it for me: the smell of flowers, my pup licking my nose, Face Time calls with family and friends. Let's hope connections on here may blossom for some...

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                  • #24
                    Yeah, I think we all get the 'you are so inspiring' comments. It makes me feel just like you said, like they just labeled me as 'other'. They 'othered' me. It can come from strangers, or people I have known for years. I can be having a nice time with relatives, only to have them say at the end of it how inspiring I am. Ruins it for me.

                    I am am very thankful for the Internet and places like this where we can connect. In real life it is so hard. I think if I lived in an urban area with more organized activities for disabled people I would make friends, but who knows. I am almost 50, female, and married. That means no guys are interested in being friends, beyond just casual (husband doesn't like me being friendly with men anyway), and no young people. It is so rare that I see disabled women my age. This all sounds sorta picky, but I have learned it by experience. I imagine paras think I can't do anything, but I am just guessing. They all seem to want to get away from me
                    chair user since 2009 from a neurological disorder

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                    • #25
                      I didn't lose any friends per-se. I never had any to begin with

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                      • #26
                        If you believe my Facebook about another 600 since my accident Reality it that my previous life meant traveling globally and meeting/greeting many who became friends, now I don't travel and rarely see anyone That is partly my own fault, I'm nowhere near as confident and can't physically stay out partying as I near 2 carers to put me to bed. I'm still working in the same industry and at the few trade shows that I go to can't roll far without someone stopping me and asking how I am doing. It's a nice sentiment but does get boring when all the talk is me who does so little and rarely leaves the house. My wife tries to encourage me to do more but I tend to preface my isolation.

                        I get the inspirational thing a lot mainly because I still promote cycling despite my bike related accident but also as I keep working and contributing. I'm self employed now and every client that I have says that it is the way I inspire them that they employ me for. Evidently it is good for employee moral to see me cope with a major life changing injury and still find ways to work. I don't mind this, when first injured my friends helped setup a fund raising website to try and encourage people to ride bikes and it gave me something to do as I adapted to change.

                        It is nice when friends call in and I do wish more would but for that to happen I need to do more...

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                        • #27
                          Originally posted by mrb View Post
                          If you believe my Facebook about another 600 since my accident Reality it that my previous life meant traveling globally and meeting/greeting many who became friends, now I don't travel and rarely see anyone That is partly my own fault, I'm nowhere near as confident and can't physically stay out partying as I near 2 carers to put me to bed. I'm still working in the same industry and at the few trade shows that I go to can't roll far without someone stopping me and asking how I am doing. It's a nice sentiment but does get boring when all the talk is me who does so little and rarely leaves the house. My wife tries to encourage me to do more but I tend to preface my isolation.

                          I get the inspirational thing a lot mainly because I still promote cycling despite my bike related accident but also as I keep working and contributing. I'm self employed now and every client that I have says that it is the way I inspire them that they employ me for. Evidently it is good for employee moral to see me cope with a major life changing injury and still find ways to work. I don't mind this, when first injured my friends helped setup a fund raising website to try and encourage people to ride bikes and it gave me something to do as I adapted to change.

                          It is nice when friends call in and I do wish more would but for that to happen I need to do more...
                          Ya I Get it too, but at the same time the way people as in fellow disabled express it is very conflicting we're supposed to claim were equal, or our quality-of-life is on par yet spouse to be considered inspirations because just do simple everyday average tasks like go to work, start a business,or pay taxes! Seems like their expectations have to be lowered to accommodate the limitations and parameters of the disability. I'm trying to start a real estate franchise, along with my mom who has experience in the field, does my participation and potential success make me an inspiration, I definitely don't think so ; But I know what goes on what it takes to get me to the office or wherever I need to go nothing inspirational about that nonsense. Just disturbing. Today my leg bag ripped in physiotherapy, so pissed was leaking everywhere all over their mats, I was now transferred out of my chair onto the mat before we realized it so I'm as good as a fish out of water. So I had to just lay there well all the physiotherapy ladiesran around grabbing towels and blankets to keep my getting from getting everywhere. And I had to continue to do this until my caregiver came back to pick me up and take me home! Well I was laying there feeling very pathetic, humiliated, useless, disgusting I just thought of all the times people were saying this is my new fight, how brave I am. So I looked at the situation bunch of girls wiping up my infected piss waiting around for a caregiver to come fix me up unable to do anything but just try and keep calm and I thought wow I'm incredibly braveto be laying here pissing all over in public, what a fighter I am to fight this, this well I hired a caregiver! Inspiration if I ever seen one!

                          All that aside, I'm curious man you're a severe injury and a pretty high one! And you're blaming yourself for not going out much, like you're choosing not to go out every day aside from what you have to. So we've established you don't have many friends to depend on or call upon so I'm just curious do you have or could you have caregivers or DSW's whatever to take you out to do things on a daily basis!? Even if you did would you be into that kind of thing, spending the money on it, various principles of it etc. we talked a little and from what you've told me I don't see how you could just go out on your own to do anything specific restaurant, movies, sports games, other activities etc. I am a lower injury then yours, not much but I really don't go far on my own that it's never anything specific, driving my wheelchair even in the city, with my spasms even without them can run into problems. And if I want to keep them in a spot that I can actually get to myself, it's highly likely that I would drop wallet, cell phone, water bottle etc. Can't stand the thought of knowing that's highly likely, and just thinking oh well all are some stranger to grab it, or if I need something in my backpack I'll just ask a stranger. Let us not forget things like leg bag/catheter management, autonomic dysreflexia etc. I ve thought I was a big boy and gone on my own, and it has almost always ended up terrible and/or pointless waste of time. For me it's not a lack of confidence, it's frankly just become logistics and limits that no fortune cookie one liner or effort can change.

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                          • #28
                            I think part of the inspirational thing is that despite my accident being on a bike I kept working in the bike industry and am still active promoting cycling. I'll be honest and say it isn't easy to do that but I did it and manage to g to bike events in my off road wheelchair and chat to mountain biking friends. The fact I started my own business, had to go out and find clients, demonstrate how I could still do what I used to do as well as I did before (hard when I can't travel internationally) and not let the lack of use of arms and legs stop me. I've found ways to do what used to be simple, presenting using powerpoint with a head switch to advance slides etc. The majority of AB know they'ed struggle to do that hence finding me inspirational, there delusion not mine.

                            I have 24/7 carers but need 2 if I go out in my van as 1 has to be next to me in case a vent pipe comes off. Driver can't always pull up instantly to do this. Usually my wife drives and my carer sits next to me. I don't go out a lot as I have nowhere to go. I live in a small rural town with limited facilities plus I never used to go out before my accident, life was outdoors, cycling, mountain biking, sailing, gym, riding motorbikes or driving fast cars. My new existence is totally different and whilst I'll go out with my wife/friends for a meal I eat very little and finding places we can go just seems to be too difficult. We didn't go out before, my friends are spread around the globe, I traveled a lot, live in UK but would be in Taiwan, China, Japan, US or europe so enjoyed a quiet life when home. I'm not a spectator, prefer to hit the play button not watch others doing something and can't imagine ever doing that but life is now so boring that it isn't life, I exist not live. If I lived in a city we might find more places to go but I would then need to earn more money and I am at the limit of what I can do.

                            Going out is a pain, I have 1 vent on my chair, spare vent in carry bag, trache bag with spare trache and inner tubes etc, portable suction machine, oxygen cylinder in the van, holdall with urine bottle, gloves, medication, water bottle to take meds, water proof cape to cover me and chair. Plus usual phone, wallet etc. There is no way I am allowed to be by myself, vent pipes do come off, traches block and I have to always have someone close to hand, I haven't been alone for 3 years,even at night carer is awake in next room with a baby monitor. Life sucks big style!

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                            • #29
                              I really wish the NHS had sought for that pacer ... I think it was you that we discussed that before? What about a petition? Seems a shame that you're giving more back than they're giving you.

                              Some expats here always joke that I should be disabled in the UK as I would get everything paid for ... I assume you fall into the same situation that I did ... if you work you qualify for nothing?
                              Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

                              T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

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                              • #30
                                Originally posted by mrb View Post
                                I think part of the inspirational thing is that despite my accident being on a bike I kept working in the bike industry and am still active promoting cycling. I'll be honest and say it isn't easy to do that but I did it and manage to g to bike events in my off road wheelchair and chat to mountain biking friends. The fact I started my own business, had to go out and find clients, demonstrate how I could still do what I used to do as well as I did before (hard when I can't travel internationally) and not let the lack of use of arms and legs stop me. I've found ways to do what used to be simple, presenting using powerpoint with a head switch to advance slides etc. The majority of AB know they'ed struggle to do that hence finding me inspirational, there delusion not mine.

                                I have 24/7 carers but need 2 if I go out in my van as 1 has to be next to me in case a vent pipe comes off. Driver can't always pull up instantly to do this. Usually my wife drives and my carer sits next to me. I don't go out a lot as I have nowhere to go. I live in a small rural town with limited facilities plus I never used to go out before my accident, life was outdoors, cycling, mountain biking, sailing, gym, riding motorbikes or driving fast cars. My new existence is totally different and whilst I'll go out with my wife/friends for a meal I eat very little and finding places we can go just seems to be too difficult. We didn't go out before, my friends are spread around the globe, I traveled a lot, live in UK but would be in Taiwan, China, Japan, US or europe so enjoyed a quiet life when home. I'm not a spectator, prefer to hit the play button not watch others doing something and can't imagine ever doing that but life is now so boring that it isn't life, I exist not live. If I lived in a city we might find more places to go but I would then need to earn more money and I am at the limit of what I can do.

                                Going out is a pain, I have 1 vent on my chair, spare vent in carry bag, trache bag with spare trache and inner tubes etc, portable suction machine, oxygen cylinder in the van, holdall with urine bottle, gloves, medication, water bottle to take meds, water proof cape to cover me and chair. Plus usual phone, wallet etc. There is no way I am allowed to be by myself, vent pipes do come off, traches block and I have to always have someone close to hand, I haven't been alone for 3 years,even at night carer is awake in next room with a baby monitor. Life sucks big style!
                                Man with everything you said, it's definitely not on you that you are not going out more! From the sounds of it it's just not practical, I fully understand. I just didn't get your first post there where you said partially your own fault you don't get out more. I don't think so man don't put that on yourself,if it's not practical it's not practical this isn't a broken ankle.

                                Yeah man like I said I get inspirational thing too, I totally understand the mental be behind when they said it just bugs the shit out of me! I just don't find mundane tasks inspirational just because were disabled and still managed to them especially when in fact A lot of assistance be it caregiving, mechanical, technological etc played a major part. Yeah able-bodied people think they struggle to do this and that, they never be able to do it but I am smart enough to see the numbers how many people are injured, fact of the matter is most of those people if they end up injured would do exactly what it is they think they'd struggle so much to do, whether they are happy or not. They say they could never live like that, oh my God I'd never be strong enough then they break their neck,couple years later lo and behold guess what they're "strong" enough! You're exactly right it's their delusional not yours.

                                Man I totally hear you on just existing not living! I wish that was the only problem though, Just a boring slow lifestyle but the true problem at least for me is the the fucking shame and disgust the indignity of living like this,being a burden the entrapment it's just sick the line is crossed.

                                I'm assuming you get coverage for caregiving 24 seven otherwise it's like $8000 plus a month! can't believe they will cover that but won't get you the surgery, logic and your quality-of-life is not on their radar criminal.
                                Last edited by JamesMcM; 07-06-2016, 09:14 PM.

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