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    I have a very hard time sleeping because I used to be a stomach sleeper, and I don't get turned at night anymore so it's always on my. Got a few hours last night but my damn shoulder aches it feels like it's dislocated but it's not even though when I left it upwards it does pop in and out but that always has something to do with muscle atrophy at one point and slightly stronger muscles on the other side pulling it right. That sucks man, honestly if I had the same function my left fire is still no charset or fingers I be able to use a manual chair for sure and grab things for myself, I don't know about cathing myself though, I have no idea how Id open lubricant, iodine pads and the catheter itself they're all in tiny hard plastic packages but it would only be possible with a right arm that is able to stay pronated when activating my wrist extension, and can pronate itself on its own. Like you said it is what it is. One thing I've noticed with my left arm though even though I am a complete and have not recovered anything even with all my physiotherapy, my left arm has the slightest bit of tricep control like I mean slight, with gravity I can straighten my arm fully, only with gravity like my arm at the side of my chair. And that slightest control kind of helps me keep it reached forward my right one doesn't even have that either though. It's like 100% tricep death, don't even spasm like my left one does. Very odd Sue you made be right my head injuries were from different things, not combat related. first I was dropped on my head as a toddler cracked my skull on the concrete, Second slapshot to the temple then hit the ice headfirst no helmet, and lastly hit by a speeding truck broke the mirror on the side of my head too. So you may be right, but where my scar is on the back of my neck there is what looks like a second scar only on the right side of my neck as if there was additional damage from my accident, who knows.

    As for my anger I have no idea how to manage it, screaming and hitting things aren't as powerful anymore doesn't do the same for me.

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      I have a tremendous fear when I Move out of my dads house, drop all this money on a adapted house, get caregivers might have to be government support. That I'll be up at 9am and in bed by 10:30pm the rest of my life.

      even hear I have to go to bed at 10pm every night, but if I did go out with friends some how my dads there to throw me in bed, just have to wake him up might be miserable but at least he's their caregivers wouldn't be.

      live, die, run, jump no matter what I have to move its horrible here, I just don't know how to look forward to a life like that, yes doesn't say much better either way.
      Last edited by JamesMcM; 27 May 2014, 3:16 PM.

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        Hang in there James.
        Wife of Chad (C4/5 since 1988), mom of a great teenager

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          Originally posted by JamesMcM View Post
          I have a very hard time sleeping because I used to be a stomach sleeper, and I don't get turned at night anymore so it's always on my. Got a few hours last night but my damn shoulder aches it feels like it's dislocated but it's not even though when I left it upwards it does pop in and out but that always has something to do with muscle atrophy at one point and slightly stronger muscles on the other side pulling it right. That sucks man, honestly if I had the same function my left fire is still no charset or fingers I be able to use a manual chair for sure and grab things for myself, I don't know about cathing myself though, I have no idea how Id open lubricant, iodine pads and the catheter itself they're all in tiny hard plastic packages but it would only be possible with a right arm that is able to stay pronated when activating my wrist extension, and can pronate itself on its own. Like you said it is what it is. One thing I've noticed with my left arm though even though I am a complete and have not recovered anything even with all my physiotherapy, my left arm has the slightest bit of tricep control like I mean slight, with gravity I can straighten my arm fully, only with gravity like my arm at the side of my chair. And that slightest control kind of helps me keep it reached forward my right one doesn't even have that either though. It's like 100% tricep death, don't even spasm like my left one does. Very odd Sue you made be right my head injuries were from different things, not combat related. first I was dropped on my head as a toddler cracked my skull on the concrete, Second slapshot to the temple then hit the ice headfirst no helmet, and lastly hit by a speeding truck broke the mirror on the side of my head too. So you may be right, but where my scar is on the back of my neck there is what looks like a second scar only on the right side of my neck as if there was additional damage from my accident, who knows.

          As for my anger I have no idea how to manage it, screaming and hitting things aren't as powerful anymore doesn't do the same for me.
          McM, these injuries monkey up our sleeping patterns. SCI turns what is a normal nights sleep into anything, but easy.

          Getting as "comfy" as possible may help, but it's a new ballgame just as every other thing is. I was a stomach sleeper, can still do a version of it with enough pillows. I put pillows under the parts of me that are bonier and make contact with the mattress. Think knees, elbows, hip bones, etc.

          Screaming is not as effective as more physical means. However, it worked for me to an extent. It's worth a try as anything helps when anger turns to rage.

          Keep looking for what works, eh?

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            Originally posted by JamesMcM View Post
            I have a tremendous fear when I Move out of my dads house, drop all this money on a adapted house, get caregivers might have to be government support. That I'll be up at 9am and in bed by 10:30pm the rest of my life.

            even hear I have to go to bed at 10pm every night, but if I did go out with friends some how my dads there to throw me in bed, just have to wake him up might be miserable but at least he's their caregivers wouldn't be.

            live, die, run, jump no matter what I have to move its horrible here, I just don't know how to look forward to a life like that, yes doesn't say much better either way.
            Don't let fear keep you from moving ahead. You'll find your way.

            Going to bed at 10-ish each night does not have to mean for the rest of your life. If you find a better bladder management program, what is to say a friend cannot help you into bed at the end of a night? You might also decide to use a different schedule with pca's on weekends or certain nights. Whatever you ultimately go with, keep an eye on your skin.

            You are tough enough and strong enough to carve a new life for yourself.

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              I removed posts that were derailing the thread. If someone blocks you on FB please assume they don't want to communicate with you here. In the least, send them a PM to see what's up.

              Please don't lash out at people because you don't like their response to your post.
              Last edited by Jim; 28 May 2014, 8:34 AM.

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                How's it going today, McM?

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                  Not too good.

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                    James, I apologize for being harsh earlier in this thread. It must be tremendously frustrating to be in your situation. I only brought up Chad because he has, and does, live a fulfilling life and has figured out ways to not be a slave to "the system", something that you fear. Continue to use the anger that you feel, but channel it towards finding a new normal for yourself. You can do it, it may not be obvious or easy, but it can be done. Hang in there.
                    Wife of Chad (C4/5 since 1988), mom of a great teenager

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                      Ya my dad completely freaked on me because I got my little brother to take my sheets off the bed to wash them because there was a piss smell on them, probably had a small accident the night before. He came to put me to bed at 10 everything was still in the dryer. So he grabbed a random sheet and put it on my bed well complaining, and I said you have to put the protector on it (water proof sheet goes under bed sheet to protect my 3000$ mattress) he LOST it!! It was in the dryer like 2m away and refused to grab it, I said I'm not getting in bed without it. He Started freaking out so I lost it on him for saying things like"Fuck you", fuck this, get out, call an ambulance say you need someone to take care of you!! Then went upstairs. My little brother came to help get my sheets, well I called my dad every name in the book. He put my sheets on for me I explained to my little brother how this is hard on me, and shameful he has to help me all the time, when I should be helping him, he was fine with it, but it hurts me. Dad came down once my bed was made came down told Shawn to get away from James, then told me I get him to help then treat him like shit which is completely garbage (just reflecting himself onto me he does that a lot to all of us) so I lost it told him to get away from me. The whole time he's claimed there wasn't pissed on the bed , me and Shawn both smelled it earlier that day, both put our hands there and both came off smelling awful, but that doesn't matter it's the fact he had to make a bed at 10:30, he wouldn't care about me in a bed all night with piss on it. So I haven't done a drain since 6pm spous to do them every four hours, and Im still in my chair with my tiny leg bag it's 3:30 AM. whatever I just didn't want any help from him, I spent the last 20 minutes getting my pain pills open with my teeth didn't even spill, but the pain in my kidney area and stomach is really bad, can't tell exactly where because I have no sensation. But we have a big wedding party to go to tomorrow my entire families going to be there. I think I'm just going to stop taking Vesicare, take pain meds and stop doin catheters until I see my urologist and get a supra, I'm sick of asking him to do ics just makes him complain and freak out. Lots of drinking tomorrow though! Whatever if something happens to my kidneys ill just tell them to let me go not worth living on dialysis too. It's so hard for me to let him talk to us like that, freak out about just having to do his work which I pay him $6000 a month for, when he says these things I just want to beat his head in or at least defend myself but I can't I can't punch him, before you think oh my that's extreme you have no idea what it's been like the past year in this house for me, all well coping with my injury. after everything I don't know what Id do. Who knows what's happening with my bladder and stuff right now I had frig have serious health issues in the past and present because of my Bladder, still in my dirty 3 day old cloths stuck in my chair could've pissed myself, with a big wedding tomorrow and he's sleeping like a baby, I can hear him snoring from upstairs. Doesn't give a shit!! I agree complaining is disgusting no doubt, but less than a year and a half after my injury lost my entire body If I so much as whimpered about anything related to being paralyzed he go "oh my God here we go, poor james" "all you do is complain". Then bitch all day about doing catheters, and laundry and getting me out of bed constantly complaining "what kind of life is this" "these fing drains" "i hate this". Perfectly understandable for him to complain about something temporary, but my permanent paralysis nope doesn't matter, when I leave with my misery, he'll find something else to feel sorry for himself over.

                      I want nothing more then to get out of this house, but my lawyers are more preoccupied with other cases. They were supposed to send someone to do a house assessment six months ago still nothing done. So I have no quote or anything to get a new house with my insurance company. Caregiving is going to be a Nother problem once I drop that much money, going to be waking up at 9 going to bed at 10 for a long miserable time.

                      How would someone like me with no sensation tell that I was experiencing kidney damage or failure, I feel deep pain like I'm sure I would be in a lot of pain but the problem is I m in tremendous pain right now, and it's definitely kidney pain, always what it feels like when I'm late for an Ic (drain) lots of pressure in those areas and flank pain similar to my kidney infection pain that's a more burning though. I just want to know what to expect, kidney failure, removal anything like that has been one of my worst fears since I was a child, but I'm learning to deal with that fear.
                      Last edited by JamesMcM; 31 May 2014, 4:17 AM.

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                        Mark my words I'll get out of this s***hole

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                          Very sorry to hear about your delightful evening. Your dad sounds like an abusive prick. Why exactly can't you be paying a caregiver instead? Your life will improve immeasurably when you're in control of your own care.

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                            I'm hoping $6000 a month was a typo. If not, you can easily afford to get yourself in a better situation.

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                              James, if you lawyers are more preoccupied with other cases it may be time to find another lawyer. I had to get rid of one of my attorneys for not doing his job!
                              The test of success is not what you do when you are on top. Success is how high you bounce when you hit the bottom
                              --General George Patton

                              Complex problems need to be solved collectively.
                              ––Paul Nussbaum
                              usc87.blogspot.com

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                                I agree, time to find a new caregiver. That would probably greatly improve your relationship with your father. Hopefully to the point where he can help some at other times without too much complaining.

                                Have you looked into equipment to help you cath intermittently? It took me a long time to figure out a system that worked for me but, like you, I needed to so I wasn't depending on others. There are tino braces that convert wrist movement to a pinch for holding the catheter. There is also a wrist brace that has a spring loaded pinch. These are custom made braces. Many places that sell catheters also sell a little clamp to make insertion easier, not sure how these work. You might even be able to use a locking forceps to help.
                                I use my teeth for most everything. One of the handiest tools I have and it was never even mentioned in over a year of rehab. Big mistake. You can certainly use them to open the lube and iodine but I like to use a 4 oz tube of lube that I can just stick the catheter into every time. I also get PDI Sani Hands wipes to use instead of iodine. At first I used a table and would hook the urinal on the edge to keep it in place but I have since found it much easier to hold it between my legs with the seat belt.
                                Cathing myself definitely didn't come easily but I needed that independence. What works for one person might be a complete failure for the next but let me know if you have any questions about how I cath.

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