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Thread: Time

  1. #11
    Quote Originally Posted by TomRL View Post
    The time element was one of the reasons I decided to work out of my home. Saving a couple hours of commuting per day made up for part of what I lost doing other stuff.
    Working via videophone-type-technology is a distinct possibility for me in the nearish future, but the other day I inadvertently timed my commute to my (main) worksite as it happened to be the exact length of Outkast's Spottieottiedopaliscious so about 7 minutes. I pay a premium to live close, but I need the extra time. Most of my coworkers live 25 or 30 minutes away.


  2. #12
    Senior Member lynnifer's Avatar
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    I think any of us that have worked ... it's work and sleep. It gets old fast. I've been out 3yrs and I still don't have any hobbies and am quite sick lately in and out of hospital ER twice in one week.
    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

  3. #13
    Sleep loss seems to be a burden that goes with sci. I call it life on the edge because your always tired and at your wits end for at least half the bloddy day.

  4. #14
    Senior Member lynnifer's Avatar
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    The best advice I could give is hit it hard while young. Because at 40 - your fatigue is going to be two-fold. Plan for that. Plan on whether you will have to leave your job early or for months at a time.
    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

  5. #15
    Suspended Andy's Avatar
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    I'm sort of thinking 2nd shift is the key to SCI work stuff lately. Wake up around 8 or 9, casually wake up/shit/shower/do household chores, and done around 1pm, maybe throw in a nap, go hit the traffic jam just before 3pm. Get home and crash around 1 or 2am. Lather, rinse, repeat. This seems to be a lot easier than trying to get out the door at 7am, then having to take a morning and evening dump to keep the pain/spasticity down, at least in my case. But at any rate, as I get older (ripe old age of 46, lol), this is getting to wear thin. Still working out how a semi-forced disability retirement might work out to turn a new page in life (work has a new more annoying factor looming on the horizon which I don't want to participate in). I cant fathom going out for 'recreation' on the same day as a work day, unless it is briefly before having to lurk at work for 8 hours. Might be easier if there was a bed at work to get off my ass for a while, doubt that will be happening, lol.

  6. #16
    I don't post often, but I just wanted to say that I greatly appreciate this thread. The loss of time since my injury is probably one of the most depressing things, especially since it will only get worse with age. I hope you find a way to deal with it. I know I haven't yet.

  7. #17
    If you think about the grand total of accumulated time you spent doing bowel care, getting showered/dressed with only your arms or caregivers, transferring yourself into a wheelchair or getting put into a lift, situating yourself in bed/chair/harness/van etc, bladder management and it's long list, cleaning up or being cleaned up because of an accident, dressing bedsores, Time spent diagnosing or managing autonomic dysreflexia, feeding yourself with tools and barely any arm function ( practice only goes so far with missing bodily function), waiting for caregivers for many different things sometimes being trapped in bed for hours sometimes a whole day, waiting for wheelchair transportation, finding assessability etc etc if you add it all up it's pretty daunting, obviously every injury is different but still.

    For myself because of Dysreflexia for whatever reason this last year I have had to shit every day, for practicality I shower every other day still (not preferred as it can be gross, but I also hate being bathed) on good days we are talking everything combined at least 3 hours spent on just sci crap everyday. That's being modest, in my case or similar/worse very severe and dependent injuries VERY modest. No way to calculate days when caregivers are late or don't show up, among other things, and I'm not educated on everything involved with the ventilators did not pay attention when I was on it for a couple months early on. But just for sake of discussion i will go with three hours a day.


    Thats 1095 hours a year, 45.6 days out of the year; modest 12.3% of the year. Now a lot of us injure ourselves in our youth like myself, so say I live till 65, 45 years. We will stick with the modest three hours a day despite the fact that getting older with sci will undoubtedly make things more complicated to say the least. It works out to:

    49,275 hours, 2053 days, of course the percentage still basically remains the same 12.4 percent of my life with be dedicated to JUST simply "sci crap". Of course you could live much longer or much shorter, but 10-13% will be the magic number for the time you do have. obviously that is an extremely rough estimate, based off a modest assumption I made to be inclusive of all injuries. For myself and other quadriplegics especially higher injuries on ventilators the number will undoubtedly be higher. For lower injuries it could be a bit higher (not likely), or lower, with a lot of effort that would die down with age, As it would eventually lead to shoulder damage you could clock off maybe a 1%. Then of course there's injuries that can walk, I'm not including those as they are fairly uncommon.

    PS if you're wondering I thought about this and broke it down along time ago in my first year. Quite disturbing, one of the worst things that can happen to humans, and needs a treatment to drastically reduce that number for the sake of being humane... Keep in mind this isn't looking at the time we spend at doctors office, dentist, mechanics, cleaning, working etc The things able-bodied people will obviously have to do too, this is purely time in regards to spinal cord injury chores. And we are only addressing the impact sci has on time, A substantial implication but far from the only one.
    Last edited by JamesMcM; 08-05-2016 at 11:59 PM.

  8. #18
    As I run short of time (for sleep that is), I find myself learning to multitask. For example, today i got home after around 14 hours at work, went through the drivethrough on the way home and finished my work on the computer while eating my meal. Not the most sanity of conditions (or pleasant), but I figure it bought me an extra 30 minutes of sleep.

  9. #19
    That's good I suppose, what is your injury? It takes a certain level of function to productively multitask, hand function or at least decent hand function plays a very substantial factor. Little to no arm functions and it's up to caregivers, trying to push multiple tasks at them all at once can be quite troublesome you can end up with a bad day where you have to listen to a trivial rant about "caregiver burnout", if the fit is substantial enough you'll have to limit your lifestyle ( even more than The injury already causes on its own without fed up caregivers) for the next couple days to a few weeks.

    They have all kinds of resources for the caregivers, given the fact that my mother does a lot of my care I am thankful for that for her sake. But really there is nothing to help the severely disabled, there's no dependency burn out, chronic illness and poor health burn out, uncontrollable body movements/ nerve pain burn out, helpless body rot burn out etc.. Just a quick diagnosis of depression without any real analysis or consideration to the individual or to the situation and given awful/often useless pills as an attempt at "treatment".

  10. #20
    The title of your thread, Funklab, caught my eye. Just announced to my husband this morning that the Greeks should add another god, the Goddess of Time. I felt thankful to that "God" as today for the first time in about a week I woke up without the severe pain of a pulled muscle in my scoliosis back - the only muscle there, don't even know how I did it. Through this week I kept focusing on Time passing while my back was hurting so much that hubby had to wait on me. Knew I would feel better in a week.
    Your post about the late night co-worker get-together reminded me of so many times I had to opt out, leave early, change plans, etc. due to my physical disability. Even after retiring after 20 years of employment I still have to modify social issues due to increasing limitations.
    Thankfully I have a wonderful husband (also paralyzed), understanding family, and a craft hobby I've done for 15 years which keeps my mind off things.
    Last night I had a dream I was doing my daily "getting ready", with all the effort, planning, caution, and afterward I was sitting calmly and someone handed me a gold medal. I'm sure this dream came from watching the fantastic Paralympics on NBCSN last night. I understood the work each competitor did to get there. Can you imagine a quadruple amputee winning a medal in swimming!!
    Just want to say 'hang in there'!! Life is still good.

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