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Thread: Just can't stand it

  1. #1

    Just can't stand it

    Apparently once you become crippled badly enough to leave you completely bound to a wheelchair dependent on caregiver; you don't have the right to get in and out of bed when you want! Apparently if once in a blue moon you're allowed to stay up till 3 AM to do something "fun" you are being privileged , You're supposed to count your sweet blessings; and bass in the generosity of the person that allowed you to do this. Apparently if you need to calm your hair, get the gel handed to you, as well as your toothbrush, as well as your flosser , Then followed by your sweater call the supplements and breakfast etc. apparently you have to break it up in sections, at best you'll get the standard morning procedure if you wanted to do something out of the ordinary or add a new procedure to your daily schedule such as a rigourous diet, or a hair treatment you don't have the right, you may or may not be humoured with it once in a while but don't expect it every day, even if it is necessary to do it every day! apparently when you're crippled at 4 o'clock in the morning, if you're in agony, and you're not tired at all, and you're angry as hell you have no choice you have to sit in bed you don't have the right to get up and go for a walk or a roll in this case, it's 4 AM it doesn't matter that you're an individual that's in pain and not tired and frankly frustrated beyond imagining about being trapped. Like I get it kickboxing is gone, snowmobiling is gone, weightlifting is gone, bodybuilding is gone running is gone, even proper video gaming is gone (oh I spend the money and I tried) The list goes on, but now every day I am dictated on bedtime/ waking schedule permantly. Many of times at my fathers house I laid thirsty till the fucking end of an entire night, with water in arms reach away but unable to reach two arms to grab it so I stayed thirsty until someone woke up in the morning and hopefully walked by. Here I am about 5 o'clock in the morning, couldn't sleep couldn't stand sitting in the bed so after a lot of arguing I bitched and bitched just because I had enough I feel I should have a right I should have fucking choice! and now I'm out of the bed, but as a repercussion I'm not able to go back in bed. Well this is happening I am being preached about civil rights and Breaktime, off shift blah blah guess after a serious enough disability a lot of those rights go out the window. Just keep em for the ABs tho.


    Mindnumbing fact this weather it's my father, my mother, my friend, or nurse it's always the same thing I can't do this constantly, I need a break as they constantly walk in and out in and out in and out in and out, taking showers, scratching their ass using the toilet completely unaware of every little blessing every luxury of the human body worth more than $1 billion. When you pointed out to him what they have, you face nothing but defence of backlash, oh yeah I have to sit here and look after you as if they're sitting stuck in one position all day! Nothing could be farther from the truth, yes they do provide me with caregiving but nothing is written in stone nothing has to be done! Nothing is stopping them they are making a conscious willing choice to help me that is a luxury in itself and they are so ignorant to true suffering they don't realize it. I wouldn't wish it on anyone, but true suffering is when there is no choice,A disease or disability dictate most of your life most of your decisions what you can and can't do, There's no choice the best you can do is adapt and live without it, work around often with slim pickings they have to be picked up by someone else before you get your get your share.

    I know I'm a violent individual, I deeply want to hurt those that hide behind weapons or pray on the weak a dexter complex. If I ever got the upper hand, it would probably take everything in me not to kill them. Don't have to worry about that now! I know I'm a serious and often miserable individual, I'm not bubbly I'm not optimistic, I see harsh realities and don't pretend they're not there! In fact the thought of me being bubbly turns my stomach, being affectionate makes me uncomfortable! But I am who I am, and truth be told I love myself I wouldn't have it any other way because it's the kind of mentality that's the only way to achieve what I wanted to achieve! At this time I should say I loved myself.

    Physical ability as well as appeal mean everything to me! Ever since my disability because I don't try to paint with my mouth, I am choosing to be miserable apparently! Apparently after a severe disability you no longer have the luxury of being an individual. Apparently you're just supposed to enjoy what remains despite your disability! What here's a hard fact everyone tries to avoid if the injury is bad enough, depending on the individual they can literally lost everything they truly enjoy doing, everything they are passionate about. Often told I'm not trying because I don't go out to dinner with my mom and her boyfriend, well I genuinely don't enjoy spending too much time with them, in fact I've never enjoyed going out to dinner unless it was with an attractive female I planned on sleeping with. I was once told why don't you just take a taxi and go check out Walmart by my father, once I explained how stupid that was I was just disregarded as being miserable without trying. Well I have a question, why are none of these people spending mass amount their time drawing pictures, check it out Walmart, reading, writing etc. because they don't enjoy it, it would be like peeling paint for them their brain would never literally reject it and nothing productive would be done Best zombie mode autopilot would be activated. So basically just because able-bodied people have all the choices in the world on what they choose to do, I'm miserable because I don't do the small amount of things that I could do on a regular basis despite the fact that I genuinely don't enjoy any of them! The few that I can tolerate, I don't mind them like say watching/ going to movies, reading, playing apps etc. Funds permitting I do them to death, I don't much like quadriplegic physiotherapy but I wish I could do more it's just too expensive. Nonetheless none of these things that I just do because they're the only options fill me with genuine enjoyment, contribute to making me have a good day or making me less miserable or taking my mind off the fact that I am about to ask for assistance yet again, it doesn't justify the later because I get nothing out of it. wellllll sorry art, or even rugby the quadriplegic equivalent etc aren't my thing, that's just the way it is. It's no different than the fact when my friend got a gun pulled on him ( ende up being sake but we didn't know that truly), I was the only one that stood by him everyone Else ran just who I am.

    Frankly I'm getting sick of able-bodied people complaining about their trivial problems in the sense that they are temporary, it's not permanent with time or with effort it'll pass. I don't even see that kind of thing is a real problem anymore, and comparison to some of the people I've seen like myself or worse it isn't. I'm sick of being at people's mercy, I'm sick of being a victim in need of saving every day that's just the way it is until I find someway to stimulate my cord that's what it is. I just want to be able to utilize my own determination, resilience and strength to find a way to work with this injury and in time away to treat it. But instead I have to just lay around and rely on other people, utterly trapped and helpless no matter if I am optimistic or pessimistic that's the way it is, no one shows up I stay right where I am and they can all ways use that against me and there is nothing I can do about it, bye do about the point where they want to leave I'm fully willing to starve, rot rather than fucking baggive them their way right or wrong just because they're the able-bodied...

    Every injury impact differently the pending on the vertebrae damaged, after that the severity of the trauma/timing of surgery/many other factors in the first 36 hours ends up with or without different function based on severity. And after that everyone's body reacts differently, sum end up with no nerve pain , And flaccid paralysis with others are being constantly burned alive invisibly and have to choke back pills and tie themselves down just to remain in one position, others end up with a bladder with no pressure no problems, others end up with an excruciatingly high-pressure bladder that increases care given and causes chronic infections, just to name a few examples. After that something all of us never really touch base on so let say you take to C4 injuries both completes one has always been a computer enthusiasts that's his passion, the other was on his way of professional motocross of some kind. All things said and done the athlete loses more, as he can't pursue his passion even remotely,The computer Guy can pick right back up with his computers, a little more difficult but he still can at least flirt with his passion somewhat. When I think of this I think of the 22-year-old professional rugby player, ended this life or the end of million-dollar baby! And it's relevant to my situation because I got this annoying in complete injury preaching at me, like talk about the betas revenge haha it's not that his injury is less severe, that he does most of his care on his own that's part of it, but he is a massive film enthusiasts that's all he did before his accident, and that's what he does after it! I understand many people aren't as lucky, and move on and find something else even still, I'm just sick of people thinking they know what's best for others just because of the disability; and at the same time completely disregarding their individuality! Haha TVs frozen, cannot remotely reach the changer and I guess my body has to P now, going severely dysreflexia I'm not waking anybody up it's not worth it not remotely that's gimp life got to pick your battles I guess forget rights, you think you have rights because you get a ramp everywhere. must be nice to be a lower less severeinjury straight up if that's the only thing holding you back in terms of entrapment your golden... OK pathetic rant over, this help me calm down because truth be told if I could've moved either myself or the person pissing me off would've been in serious shit, nothing wrong with a fistfight to settle things nobody will hit me anymore though for fuck sakes, I digress
    Last edited by JamesMcM; 05-03-2016 at 07:11 AM.

  2. #2
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    Damn James. Read the whole thing. I know you don't need it want my sympathy but I do feel terrible for what you're going through. You've lost so much, but you've not lost your voice. Your words and experience reach out and touch and affect others. I've learned from you. I value you. I'm sure others do too.

    Those things don't change the difficulty of your situation, of your injury, but I hope it's some consolation to know that you and your words do mean something.

  3. #3
    The biggest Ftrip ( and I think many would agree ) is you don't want to be a burden! 98% of the time I do everything I can to ask for as little as possible, especially when it comes to people I'am not paying. I couldn't imagine living a life where I just constantly expected and asked for help, from anyone available it's just not in me to do it so obviously I don't get out too often,unless it's something productive and/ or important or you know the rare circumstances friends offer. I don't want to limit or impact anyone just because I broke my neck, but it's just so mind numbingly frustrating listening to someone preaching about my rights, human rights oh my days so hard I have to write a test, or do laundry today etc (like God give us the luxury living when writing a test/Cleaning clothes is something to whine about). A lot of us don't even have the human rights of staying up till we want, going to bed when we want, and getting up when we want like once they put you in bed, that's it the effort you put in again you're done, you're literally trapped then you have people walking in and out, laughing saying they're going to bed but end up staying up really late just sick. And you know everyone's got to work have a sleep schedule, but it's having the choice of variety not when someone's available to do it and that's the only option! Getting in and out of that is just one example of many situations that are like this when you're dependent. If you wanted the "right" to get in bed whenever you want, if you were comfy you're not tired get out of bed, then maybe get back in it a little later after doing whatever with an injury so bad it leaves you non-ambulatory you would have to have at least three caregivers a day were talking $10-$15,000, we still have to pay everything else, every normal expense gas, cable, hydro but you got a caregiving to it. It's just really mind bending really twisted, and a really useless way where you can't fight it you just have to succumb to it.… Honestly I can't do it, I can't be at the will of someone, have to abide by someone else's schedule simply because I only have a certain amount of money to give them and they have this right and that right. You know and like sometimes, the place is a mess and they didn't have time or didn't feel like cleaning up so you have to sit there in a mess, or you took a shit this morning but keep going this reflects "oh we already did that this morning" dear God not that I would by any means want to do it more than I have to, nothing disgust me more then having people do that to me, but I'm starting to realize four years post sometimes this dead body does what it wants I'm not in the driver seat even with my own body, and I'm at the mercy of other people that are providing my care! And injuries like myself are even more at the mercy of the almighty dollar, it dictates whether we get up at this time, shit at this time how many times you get to do this if you can go out etc. because you got to pay someone to do these things for you or at the very least assist; it's screwed up. And now I'm sore as hell, probably got a decent infection from urine squeezing in my bladder and I'm covered in piss, but you know what that's just physical pain, physical pain is a joke to me. ,but I was literally losing my mind laying in that bed trapped like a rat listening to able-bodied people bitch! Then making a request only to be ignored until I made a scene, all well being completely defenseless, nothing I could do to change it no matter how hard I worked or tried, in the end just lay there as a victim waiting to be cared for...

    In the end when you're so frustrated what do you do, I can't yell very loud my lungs are weak, when I hit something it just makes me angrier because I don't even cause a decent manipulation in the objects by force, objects just remain unfazed. Can't go for a run, can't exercise often times you're stuck in a chair or in bed so you just have to sit on it. Let it eat you alive. I've had serious problems with anger, not talking about your average troubled teenager. Like abnormal, especially after a few serious head injuries that I should'nt of walked away from ... I've done things in my past out of anger, that are troubling some feats blow my mind others I'm a shamed of, others I'm kind of proud of in a twisted way. boxing, training that changed everything for me, only reason I didn't end up hurting someone ( even though it would've been someone that deserved it, I grow up in a shit hole town lots of little inbred thugs hiding behind weapons) , but that's gone now meditation can help if I'm having a minor episode, providing nobody continues their verbal attack Valium in high doses needs to be implemented on the bad ones. Of course outside of my body nothing serious will happen because of my injury, I couldn't hurt a fly I don't know whether to be relieved or disgusted by that, definitely both
    Last edited by JamesMcM; 05-03-2016 at 07:49 AM.

  4. #4
    Quote Originally Posted by Mize View Post
    Damn James. Read the whole thing. I know you don't need it want my sympathy but I do feel terrible for what you're going through. You've lost so much, but you've not lost your voice. Your words and experience reach out and touch and affect others. I've learned from you. I value you. I'm sure others do too.

    Those things don't change the difficulty of your situation, of your injury, but I hope it's some consolation to know that you and your words do mean something.
    Sorry to waste your time dude, none the less thanks for the kind words!

  5. #5
    James, you don't know how much we are alike. My circumstances are a little different and I'm at least twice your age, but the mental thoughts are the same. I'm tired of being dependent upon someone to do some of the simplest things. In my case, when I have home health aides here, I can have them do many things for me that my wife won't do or get mad at me for having to do it. Last week I was in so much pain and couldn't get comfortable in bed, so I called the night shift aide up from the basement to get me dressed and put me in my chair. This was 5 am. When the aides are here, fortunately my auto insurance pays for them (a benefit of Michigan's Auto No-Fault Law), they stay in our basement. I finished off the basement during the summer of 2007, a few months before my accident. So the aides are sitting in a very nice place. Have a TV with satellite service. A very large walk-out basement glass door, 8 feet wide. A bathroom and free Wi-Fi. They do a ton of stuff for me. In turn we have given up our privacy for one thing.

    As I mentioned, we may think alike in many ways. However, this a difference and I think it might be significant. I'm older than you so I've been fortunate to experience many things that you may never have the opportunity to. Sorry about that, but that is the brutal truth and unfortunately I think you'll agree with me. That being said, there are many things then that you'll have some twisted benefit of not knowing what you're missing. Consequently, I've experienced many things that I thoroughly enjoyed and now know that I may not get to experience them again. That's where these able-bodied people need to know and understand how precious everyday tasks or events can be taken in a flash. I try to tell my friends, the very few left, not to take everyday moments for granted. When I look and review the backgrounds of those who are quads, a very large number of them were injured at a young age like yourself. Going forward, for many of them it's like being born again in a sick way. Since there are many things they'll never get to experience, and not know what they're missing, they can set their path forward. For someone such as myself, being injured much later in life, the mental battles can be agonizing. Always remembering the things you enjoyed doing and knowing you may never get to do them again just burns you out mentally.

    I've mentioned it before in another thread about how much of an inconvenience I am to my wife and children. When the aides are not here my wife is the one who takes care of me then. This is where her agenda for the day really doesn't have me at the top of her list. Consequently, when I need something she'll do it, but without first giving a deep sigh or rolling her eyes. Can really make you feel loved and wanted. I'm not sure there is an answer for us James. Whether or not you want to believe it, you are much better off than I am. You stand, no pun intended, a better chance of walking than I do. That might be provided you can keep yourself together mentally for another decade or so. You may have the luxury to see which trials are truly successful and which are not. That way you don't have to take part in a trial and hope you don't get the placebo.

    I'm with you James, for better or worse.
    DaDutchman
    C5/C6 since 2007 due to car accident

  6. #6
    I am sure most of the quads have felt the same way at one time or another, hell I have been a quad for almost 37 years! Been through a lot of caregivers until I've met my latest wife. It does give very frustrating having to depend on someone however you will have to face the fact that you need help and some people are more passionate than others. I have been in my job for more than one 21 years and now I'm laid up in his bed having to be treated like a newborn as I cannot do shit laying in the bed. I am so thankful I have a computer and I am using windows speech recognition because I cannot type while on my back! I have felt the pain brother!
    "Yesterday's History,Tomorrow's a Mystery"

  7. #7
    James, I see you are in Canada. I thought they had a great healthcare there?
    "Yesterday's History,Tomorrow's a Mystery"

  8. #8
    James, it's tough. People understand but that doesn't make it any better. Sometimes it helps to retreat to under the covers and live in a fantasy world for a while.

    This guy understands.

    You will find a guide to preserving shoulder function @
    http://www.rstce.pitt.edu/RSTCE_Reso...imb_Injury.pdf

    See my personal webpage @
    http://cccforum55.freehostia.com/

  9. #9
    Amen james, amen...
    I was a bodybuilder too, you can play video games. I have a ps4 and I use a Quadstick.com
    If you're interested I know a guy that has your injury and he is two years post. He plays really good so he could help you out
    C5/C6 Complete since 08/22/09

  10. #10
    Senior Member lynnifer's Avatar
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    I'm so sorry. Don't even know what to say.

    You are supporting your mom and she is your caregiver? What about an assisted living facility? Basically an apartment where you can call for help when you want up or to be turned etc?

    Sounds like a poisoned environment at home.

    I thought Dr Edgerton had done his estim with 23 quads with success? Hang in there.

    Trying something new always gets me out of a funk. I wish I could solve something for you ...
    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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