View Poll Results: Friend situation after sci

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  • I lost all of my friends after injury

    7 20.00%
  • I lost most of my friends after injury

    10 28.57%
  • I didn't lose any of my friends after injury

    9 25.71%
  • I kept in touch with most of my friends, but rarely see them since injury injury

    9 25.71%
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Thread: Friends, how many did you lose? How many do you still have?

  1. #21
    Quote 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 at 09:49 PM.

  2. #22
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    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. 😁

  3. #23
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    Quote 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...

  4. #24
    Senior Member Sarafino's Avatar
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    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

  5. #25
    I didn't lose any friends per-se. I never had any to begin with

  6. #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...

  7. #27
    Quote 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.

  8. #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!

  9. #29
    Senior Member lynnifer's Avatar
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    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

  10. #30
    Quote 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 at 09:14 PM.

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