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  • #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.

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    • #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, 11:59 PM.

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      • #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.

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        • #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".

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          • #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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            • #21
              I am T-10 46 years post and 71 years old. I have done a daily dig-stim bowel program for my entire sci life. I don't know if I am the exception or the rule but the amount of time needed for my program has gotten shorter by the decade. My program usually takes 20-30 minutes daily. Nothing but manual stimulation causes a bowel movement. I can't remember the last time I had an accident. So for some folks like myself the bowel program gets more reliable and takes less time as decades pass.

              I worked until age 55 and had plenty of energy until about age 50. My daily weekday schedule involved getting up around 5:30 or 6:00 AM doing a bowel program then showering, let dogs out. Then a 30 minute commute to work, work 8 hours, commute home, feed dogs, let dogs out again. Drive 30 minutes to metro park 3 times per week, transfer to race chair, do 10 miles, drive back home. During racing season do a 10K or longer every weekend. I think the race chair was responsible for having lots of energy during this time. My energy levels started to drop around the same time as I quit road racing and heavy training. Now at 71, one major activity per day is enough for me. I suspect I would have more energy if I exercised regularly but at my age I seem to easily injure myself and don't want to risk any chronic injury which would limit my ability to remain physically independent.

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