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    #16
    Peders, I have considered getting VR gear. I'm not super knowledgeable about all the different types and don't know what would be best. Which are standalone and which require computers/phones to use. I'd want something that's realistic but not too pricey. (Where's the Matrix when you need it?) I worry though, that it VR is that good, I might not return to actual reality.

    Thanks...

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      #17
      My heart breaks for everyone in this thread that has shared their situation. I know this isn't a popular thing to say but it is my personal experience and doesn't hurt to throw another option out there. I don't know how anyone, especially those of us with disabilities who live in a world that isn't made for us and our wheelchairs have any hope outside of looking forward to heaven. I love my family and friends and want to stay on this earth as long as I can, but I can only feel that way because I know my time here is a blink of the eye in comparison to eternity where I will be be in a fully restored physical body with no pain forever because I believe in Jesus. So if there is anyone that feels like they are out of options, God is waiting on you with open arms.Honestly, you have nothing to lose and everything to gain. Feel free to pm me if you have any questions. Again, I'm just sharing my personal experience and giving an alternative option to this thread.

      EDIT: let me clarify something I said so there is no confusion. I said "if there is anyone that feels like they are out of options, God is waiting for you with open arms". I did not mean for this to come across like suicide is the answer and God is waiting on you in heaven. I don't believe that at all. And I don't believe God caused my spinal cord injury. We live in a fallen world with free will. I meant God wants a relationship with you here on earth and trusting in him will bring you a joy and peace that cannot come from the things of this life that most of us lost when we became injured anyway. I have seen God bring good from my situation and that of those that are far more disabled than I am. Sorry again for any confusion.
      Last edited by Brad09; 31 Oct 2018, 12:28 PM.

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        #18
        Thanks Brad, faith is hard to keep believing in. Yes many miracles out there but more people living in unjustified situations all over the world. Been in the chair 4 years now. Had hope and belief now it is just living life the best I can. I recall waking up in the hospital and simply thinking you can't beg or barter with God, all you can do is give up or accept. Some days it is just hard to accept this way of living, and thinking I am not good enough to expect a miracle. The decision was made in the er after coding 3 times that I was to stay here on earth. People tell me I have accepted this life with such grace. But really what other choice do we have. I keep my pain inside away from family and friends. They can't help or change me so why tell them, only to have them feel bad. These forums are so good to help me keep going on those bad days. Yes I am so grateful I am only a para. I know we always want what others have, and many people on here would love to have only my injury. None of us would have chosen this way of living. I can't begin to understand the difficulties of being a quad or home bound. Most of my friends have moved on. Unable to see me struggle to do things. As they say you find who your true friends are when tragedy hits. I always thought if my life changed around how I would seek out people who are in chairs to help. I watch An older woman yard in my neighborhood grow out of control now. She would have been my first person. I can't reach her door to knock to see if I could help and would need my outdoor chair to go into her yard and I never travel with it.So i remain an inspiration to others, got to love that statememt. What does that mean? It doesn't change people. Was life really ment to be this hard? Your statement that God is waiting with open arms can really mean 2 things, either he may be here to help you or is waiting in heaven for us. I wish I could offer you help able chef or some solution aside for maybe sending out a pm to people on here that you may feel could be good for you, and then either chatting online or talking on the phone of FaceTime. The words from an old song this world was not meant for you and I.

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          #19
          Originally posted by Lavender lady View Post
          Thanks Brad, faith is hard to keep believing in. Yes many miracles out there but more people living in unjustified situations all over the world. Been in the chair 4 years now. Had hope and belief now it is just living life the best I can. I recall waking up in the hospital and simply thinking you can't beg or barter with God, all you can do is give up or accept. Some days it is just hard to accept this way of living, and thinking I am not good enough to expect a miracle. The decision was made in the er after coding 3 times that I was to stay here on earth. People tell me I have accepted this life with such grace. But really what other choice do we have. I keep my pain inside away from family and friends. They can't help or change me so why tell them, only to have them feel bad. These forums are so good to help me keep going on those bad days. Yes I am so grateful I am only a para. I know we always want what others have, and many people on here would love to have only my injury. None of us would have chosen this way of living. I can't begin to understand the difficulties of being a quad or home bound. Most of my friends have moved on. Unable to see me struggle to do things. As they say you find who your true friends are when tragedy hits. I always thought if my life changed around how I would seek out people who are in chairs to help. I watch An older woman yard in my neighborhood grow out of control now. She would have been my first person. I can't reach her door to knock to see if I could help and would need my outdoor chair to go into her yard and I never travel with it.So i remain an inspiration to others, got to love that statememt. What does that mean? It doesn't change people. Was life really ment to be this hard? Your statement that God is waiting with open arms can really mean 2 things, either he may be here to help you or is waiting in heaven for us. I wish I could offer you help able chef or some solution aside for maybe sending out a pm to people on here that you may feel could be good for you, and then either chatting online or talking on the phone of FaceTime. The words from an old song this world was not meant for you and I.
          First, I edited my original post to clear up any confusion about my statement that God is waiting with open arms.

          2nd, I agree that faith is hard, especially in our situations. And I'm not waiting on God to heal me from my SCI. Over the years it has become the worst thing that has ever happened to me, but also an opportunity to relate to and empathize with others as well as help people in my situation in any way that I can. Ultimately we all have purpose. Whether we work full time or are bed bound, with today's technology we can do a lot of things with an internet connection.

          To the OP, I would say find something that you love or are interested in and focus your attention on that. Find online communities or forums for those things and get plugged in. You don't have to have a physical person in your room to experience friendship. Find it online. Even if its sharing your story in a blog, people appreciate when others are being real and understand life isn't really the way it is portrayed on facebook. You may be able to help someone else in a similar situation.

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            #20
            Originally posted by Scott C4/5 View Post
            I've been doing bed rest for 4 1/2 years now. I used to be depressed but now I just feel emotionally numb. I can't even make myself cry anymore. I laugh and tell jokes when my family and caregivers are with me but when I'm alone I'm nothing. Unless I read or hear something on the news that pisses me off... then I cuss and rant for a few minutes and return to numb. The skin on my butt is paper-thin and tears easily and my bladder leaks incessantly through the SP stoma. I'm afraid that I will never get back up because even if my butt heals and I get my bladder leakage fixed, I still have the problem of my stepdad being to ill from COPD and other ailments to help me get up daily. My morning caregiver is 72 and the day that I got in my chair, to get my broken bed replaced, he was exhausted. Unless I win the lottery so that I could hire extra help, being back in my chair seems like a pipedream. Perhaps if I had a better view out my windows, it wouldn't be so bad but power lines and houses just don't do much for the imagination. The only things that keep me sane are my TV, my music and my laptop. :-/
            That sucks! Sorry to hear about your situation Scott.
            Never Give Up!

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              #21
              Originally posted by Lavender lady View Post
              When I was on apparlyzed I got bitched at for complaining about some thing. I was told to be glad you are only a par not quad and to stop posting your small problems. Some one else posted it did not really matterwhat level we were at. This life changing event is most likely the worst thing to happen in our life. I spend more of time here just reading.
              That's total BS. Like you're not allowed to share your inner feelings. What the hell is that site for?? Product reviews and shooting the shit?
              Never Give Up!

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                #22
                Originally posted by Peders View Post
                Scott, and everyone else really.. I just can't believe how tough you have it. The things that you and we have to go through don't even seem possible.. Scott you seem to have the worst nightmare situation.

                This is no solution, I would not even attempt to say it is a solution. It is something I am looking into for myself, and thought maybe it would work for you or any of us. It is now getting colder in Michigan where I live and I will be unable to handle going outside for about the next seven months. Very much stinks. So getting back to my thought, is anyone out there tried virtual reality goggles. I know they are expensive but the oculus ggo commercials look pretty cool. It might allow me or us to see different parts of the world even though we can get there. I think the oculus ones are $250. Very expensive, but I am contemplating it, because I am tired of the view outside of my window!
                Scott and everyone else, you're in my thoughts and prayers. I don't know how you do it. I don't know how I get through it some days.. Therefore with some of your situations being worse than mine,, I really don't know how you make it. I love you all, and can only say that even though I don't really know you I consider you my friends in battle!
                Thank you Peders for sharing! I've been thinking about getting VR goggles.
                Never Give Up!

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                  #23
                  Originally posted by SCI-Nurse View Post
                  Thank you for confiding your innermost feelings. Ask your friends to spend some time with you, even if not very often. Being in a relationship doesn't mean you can't spend some time weekly or every other week with a friend. Or if she is tht busy can you skype?
                  Reach out to your friend(s) and tell them. Members of your family also.
                  Do you have any hobbies or can you start a hobby?
                  CWO
                  Thank you for your message CWO! I've started dating again even if I'm not really attracted to the woman. The act of having dinner with someone has been amazing for my mood. I am seeing my friends more now. My family is great but seeing my mom and dad every day was really annoying me to the extent I started resenting them.

                  I started archery a few months and I absolutely love it! I'm working with manufacturers in China to develop parts. Hopefully I can have them mass produced and sell them.
                  Never Give Up!

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                    #24
                    One day they won't be annoying.

                    Originally posted by TheAbleChef View Post
                    snip... My family is great but seeing my mom and dad every day was really annoying me to the extent I started resenting them. snip...
                    I wish I could see my mom dad everyday but there in God's Kingdom now.

                    Ti
                    "We must overcome difficulties rather than being overcome by difficulties."

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                      #25
                      As I said it was on a different forum that is now closed. I think the only place you will find on here that gets a bit of fire going is in the political threads. I just don't go in to them.

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                        #26
                        This thread echoes so many of the feelings I have. I'm trying so hard to get through med school, and I feel like it's the only thing that I have to work for, even though it's literally killing me.

                        The past 2 years has been beatdown after beatdown. Lost body parts, septic 6 times, 10 months of hospitalizations, neverending IV antibiotics, unbelievable pain. My newly placed pain pump is still not working.

                        My whole demeanor changed. 2 years ago I was a happy, always smiling, ready to kick life's ass guy. I've been rendered someone else. I don't smile, I avoid interacting with people as much as possible now, I hate my life.

                        The human mind can only take so much, I guess, before a switch flips.

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                          #27
                          I'm glad that I have my family. I live with my mom and stepdad, and my dad and stepmom and my sister and nieces live a short distance away.

                          The day of my accident I had just gotten a second job and was planning to get an apartment. I was always independent and was kind of a loner. The one super close friend left me after I came home from rehab. Aside from my caregivers and family, I don't have visitors. I'm sorta okay with that though.

                          I really wish that I could live on my own. There is a tinge of resentment in the house, all around.

                          As for God, I believe, but I'm not a fervently religious person. I pray but not to be healed... for a solution. I would like to live to be 100, but if I have to go into a nursing home, I imagine 100 days will do. I don't want to end it but I figure that I can and could make it look accidental to make it easier on the family. But that isn't something I wanna do or think about right now.

                          I'm going to stop talking about myself now though and leave it to the OP.

                          Good luck all and God bless.

                          Comment


                            #28
                            Scott-
                            About your comment on resentment: I think it is normal for human beings to pin their feelings on someone close by, but the resentment is truly of fate, because SCI or chronic illness happens to the whole family.

                            And nursing homes? yes, 100 days would feel like enough and more than enough. on the other hand, one of my heroines in this life is NancyE. Do you remember her? She managed to spring herself from nursing home after 8 years!!!

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                              #29
                              Support is what this website is all about. And that is what is most impressive to me.
                              What is on your Bucket list that you could do during this time? It was mentioned that you are a teacher. You know how big online education is... of course anything computer.
                              Do you have skills? Write short stories? a Book, keep a journal, invest in the stock market.. maybe not now but they say it is a good time for buying., take an online course.
                              Just google an interest. What about ancestry? My best friend spends hours and hours doing that.
                              So may things you could be doing.
                              There is always skype with your new friends!
                              CWO
                              The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

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                                #30
                                Life hard?

                                I posted this as a new thread under the Life forum titled, "Life hard?" I posted it the next day that Claire Wineland passed away.

                                I believe it is fitting on this thread. Here it is.

                                You can suffer in and through life and still make something of your life. Please watch the video in full screen format so you are not distracted. This is what I wrote.

                                This is Claire Wineland she passed away yesterday September 2, 2018, after suffering a stroke during a double lung transplant. Claire Wineland has cystic fibrosis or CF as they call it.

                                I just learned who she was just minutes ago before reading about her death on CNN.com.

                                https://www.cnn.com/2018/09/03/healt...bit/index.html

                                Claire Wineland did a TEDx talk which she talks about hard life is with CF and how to make a life for yourself.

                                I saw a lot of parallelism with cystic fibrosis compared to a spinal cord injury in her talk.

                                Some of those parallelism I experienced in my life living with a spinal cord injury for nearly 32 years at C6 and in 2013, respiratory issues which I have to do two 30 minutes sessions of pulmonary therapy, like medicine, everyday to keep secretions (mucus) out of my lungs.

                                Her's her TEDx talk:



                                Peace,
                                Ti
                                "We must overcome difficulties rather than being overcome by difficulties."

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