View Poll Results: Friend situation after sci

Voters
35. You may not vote on this poll
  • 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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Results 31 to 33 of 33

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

  1. #31
    I should be able to find ways to work around the problems, I can do it when I want to, did a bike trade show a few months ago, 4 days working for one of my clients, doing all the press interviews, talking to dealers etc. It left me f'cked but showed that I am capable of more. I just need to find that determination more often. It's down to me to do that, can't blame anyone else, my missus sees that I can do it and tries to encourage me but I am so insular now I struggle to respond. I can't blame all the equipment, we have found ways to get around that, had a rough time a few weeks ago when I was needing oxygen all the time and that stopped a trip to Ben Nevis for a mountain bike race but amount of oxygen needed was too much plus I couldn't be laid flat as my sats drop, really needed a powered profiling bed. Lucky I didn't go as a day after I had a huge de-sat, honestly thought life was over, accepted going back into hospital when I said I wouldn't do it again,would of hated to be away and put my wife and carer through that night, it was hard enough at home.

    Totally agree that people adapt, we are not unique, you just think it'll be impossible to live like this but when it happens you cope. Maybe one day they will find a fix but it needs to happen straight after injury so you don't have to go through this.

    The way we live is incomprehensible to AB, I'm really open about what gets done to me, post stuff like bowels and what is involved to give people an insight on facebook. Share links like Clayton's writing to really let people see. Unsurprisingly they get few likes yet my positive posts can get hundreds. We're just stuck with this, it's our reality, at least you've now got an assisted suicide law! Like you I find much of what gets done to me degrading, I close my eyes and switch off, I'll never accept that talking to my carers about the size and consistency of my shit is a normal start to a day.

    We have the NHS and it covers the carer costs thankfully but it does split into essential care and ongoing, I'm in the ongoing part and it would need agreement from all involved to get diaphragm pacing. `If I am honest I am not that bothered, I'd be relying on a hidden box to breathe at least with a vent it's quick and easy to swap if it fails.

  2. #32
    "Totally agree that people adapt, we are not unique, you just think it'll be impossible to live like this but when it happens you cope. Maybe one day they will find a fix but it needs to happen straight after injury so you don't have to go through this. " Well said man, well said and as the afflicted it's OUR responsibility to do what we can to make that happen, even if it doesn't help us!

    Yeah man I understand you can do it, it just requires a ridiculous amount of caregiving I never said you couldn't it just sounds completely impractical, and not really worth it. If you enjoy it then good man go do it mine as well! But you yourself said that you are the type to play not the type to watch I'm the same way! And the fact is you're going to go through all of that work, you're going to put all of that on the caregivers potentially your wife and all you're going to do is watch. I'm riddled with the same problem, I don't need to worry about nearly as much is you and my heart goes out to you,but I feel once you lose most of your arm function your life is pretty much just watching, and or accepting massive amounts of help to do something to the point you really arent doing Much of anything . Very tiny amount of things that you can actually do on your own like painting with your mouth only certain people enjoy that kind of stuff, I'm not one of them I'm assuming you're not either!

    Having said that you have your wife, so it may be incredibly impractical, not very enjoyable and entertaining, require a stupid amount of planning and excepting help. But maybe you'll enjoy that it makes her happy or "impresses" her. I'm no stranger to pretending I am enjoying something, for other people I despise it I hate going to concerts to just sit in the handicapped zone, I've never enjoyed watching sport games ( except UFC) etc. butwhen invited I do pretend pretty good mind you I don't have a wife! Alcohol makes it a lot easier lol

  3. #33
    It's weird, I ask myself all the time "who do you do this for?" rarely think that it is me, it's like I have a public persona which has to be positive and out there doing stuff but it really is for other people, friends, family etc. How much is me I don't really know. It is impractical to carry all that stuff at times, if I'm out in my off road wheelchair we hardly take anything, dying on the side of a mountain or lake wouldn't be too bad, at least I would feel at home there. But yeah, when you think about everything I need to do to leave the house it ain't that practical.

    Screw painting with my mouth, I'm sure some get pleasure from it but it don't have the same buzz as riding a big sports motorbike or driving a 911 quickly. I'll never get that feeling back and even if I could get a ride as a passenger it ain't the same, that play button got hit a lot pre accident

    My care team are pretty good, they'll come out when I am in the off road wheelchair or stand with me at a bike trade show whilst I talk bikes or repeat the same BS to the constant "how are you?" questions.

    I'm not sure how happy my missus is, I f'cked her life as well. All dreams of what we'd do together gone and now living a life with carers constantly in her house, no privacy whatever. The unseen part of SCI, the damage you do to your loved ones. Getting back to the friends thing, my birthday yesterday and 205 happy birthdayosts, every year it increases despite me not seeing anyone

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