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Thread: I don't know how to help anymore!

  1. #11
    I am also a recent injury. I was injured in December 2011 and am around the same level. I remember being very afraid after I left inpatient rehab. It is at that poin that you must begin to live again. At rehab you are surrounded by so many people in the same situation and many that are far worse off. Everything is accessible and you feel more "normal" in that setting.

    Coming home can be stressful. While SCI is not uncommon, there really are not that many of us and you begin to feel the way you are perceived. People want to pity us and it can be easy for us to start to pity ourselves.

    I really don't have any advice that has not been offered already. She sounds like a strong person and getting her active will help tons. But that has to be done at her pace. She is still in shock and it will take time to get over that.

    Look into the High Fives Foundation. They are an organization established to help winter athletes who have suffered traumatic injuries. They are a great resource of others in the same boat who are determined to get back into the sports they love and are willing to help and support us in any way.

    Finding others in the same situation that are battling to keep their wits and continue to be active despite our limitations has helped me so much. I don't know the extent of her injuries, but no matter what they are, there is life after SCI. Check out the exercise and recovery forum on CC. You will find much inspiration there. Good luck and God bless. Feel free to PM me if you ever need to chat.

  2. #12
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    Quote Originally Posted by Sam.I.Am View Post
    Hi everyone,

    I'm using my wife's account to try and find some advice, I'm not sure what to do anymore. My wife Sam became a T11 para a little over six months ago while snowboarding with friends. After the initial shock she was hopeful and confident in herself. She always made jokes and tried hard at PT and set high goals for herself. She is funny, smart, outgoing, adventurous, and has never been one to sit back and watch life pass her by!

    She was discharged from rehab in late May and seemed to be happy to be home, but that was short lived. She had made so many plans for us this summer and was excited to try things that she loved before like kayaking and camping. Now I can't even get her to leave the house most days. I have tried everything I can think of to give her motivation. I know she is upset and hurt but her lifestyle is becoming destructive. She has been skipping PT sessions, not watching for pressure sores, and eating unhealthy. She refuses to hang out with friends even though they are over all the time, and chooses to hide in our room.

    A couple of nights ago I woke up to her sobbing around 4 in the morning. I tried to console her but she just kept saying that I'm going to leave her and I can have my ring back if I want it. I have no idea where she is getting this idea, she is truly the love of my life. It is breaking my heart to see her so upset.

    I know she is depressed, that much is easy to tell, but I don't know how to break it. I don't want to push her to hard, but she can't keep living like this, it will send her straight back to the hospital. She is only 22, has a low injury, and is only one semester away from graduating with a dual major in business. I know things in her life have changed, but how do I make her see how much she still has going for her?!

    Any Advice is much appreciated in advance.

    Thanks,
    Ayden (Sam's Husband)
    Time, patience, unconditional love, support however she wants/needs it, and encouragement to focus on the positives (or professional help to help her see that if necessary) is what you need to continue doing. It will take time.

    EVERYTHING in her life is now different to her... she likely even views herself as a drastically different person especially in how she relates to you, her friends & family, work, recreation & life in general. She thinking about everything from "I can't fuck Ayden like this anymore" to "I'll have to deal with bowel routines forever" to "how will I be a good wife/mother" to "how can I enjoy x, y, & z in life now"... even if she can still do most things, just a bit differently, they're still DIFFERENT to her and not the way they once were and wishes they could still be. Its a complete relearning of life and a daily exercise in accepting reality... she spent 22 years crafting this vision in her heart & mind of how her life was going to play out... and then in a split second all that was shattered and she's left to try to rebuilt it all from scratch. It's going to take her some time... at least a year or so imho because everything she now does in life is now "different" in some way. Even something simple like kissing you isn't the same to her because she's sitting.

    But she's lucky to have a person ike you accepting her unconditionally... she knows that... even if she can't say it & is buried wallowing in self pity like we all did/do. Take each day at a time... help keep her focused on things to look forward to... continue to build her up as a person by showing her u love her & that regardless of the SCI she still does it for u & she's your one and only. Accept that they'll be rough times for her... help her through it however u can... talk to her & encourage her to talk openly to u about her fears and don't shrug off those fears when she tells u them... listen to her, ackowledge them, and then re-enforce that you 2 will get through everything together & that you're not going anywhere. And remember, even if she doesn't say it nearly enough, every moment she's feeling lucky to be with someone like u that loves her no matter what.

    GL man

  3. #13
    Just the other day, I ran across a post that Sam made months ago and I had to pause for a moment to wonder how she was doing and wish her well.

    I was sad to hear that she's having troubles....and you, as well. You sound like a loving and dedicated person and I'm so glad that she has you in her life.

    Recovery from a traumatic injury, and hers certainly is that, is a journey and we don't travel alone, us injured. However, at certain points, it's difficult to see that. We become so consumed with learning to live with a new reality, carving out what we can in an existence that is completely foreign, that we tend to isolate and dwell for a time in a bubble. We may start out very positive and determined to beat the odds, but as time goes on, we get slapped with what our future will be.

    It seems that Sam is at that point now. She's lost her confidence.

    Not only that, she realizes what the future holds for you and in her depressed state, she can't believe that you would stick with her. She loves you so much that she's giving you permission to leave....and she's also asking for assurance that you won't. You may have to say it over and over. My husband and I have been together forever and he's been my rock since my injury two years ago. Even so, I still have to tell him, every now and again, that I'd understand if he couldn't make a go anymore....knowing full well what his response will be. I need to say it and I need to hear it.

    Recognizing that the future is different will be important for both of you. If you speak as if nothing has changed, it will be difficult for her to believe you. Acknowledge the changes and that it will be hard for both of you at times. But, as a team, you will make it just fine...more than fine.

    I would love to see her get some counseling or be with a group of injured peers. You seem to have a good plan for making that happen. Maybe she would visit here again? We would encourage her in things that would strengthen her and give her a sense of community that understands.

    I remember Sam as such a vibrant soul and I'm quite sure that that girl will return to you. It will take time and patience and you seem to have those qualities.

    My heart goes out to you both.

  4. #14
    Many good ideas here, much better then I could give.

    Honestly, I feel like most folks with SCI should be started on an anti-depressant medication while they are in rehab. It made me so sad to see people even in acute rehab fall in deep depression, and basically stop doing rehab..... It is a great loss, and they can't ever really get those crucial months back.

    We are starting to learn that depression is a common symptom in most patients after stroke, heart attack, and spinal cord injury. I never understood why this isn't addressed from the beginning.

    Therapy can be helpful, a support group can be good, but honestly finding one near you or a therapist you click with and who truly understands is rare. Working, going to school, getting out, living life.... all help, and all are hard during this early time.

    So why not get a little extra help?

    As soon as my mom was diagnosed with cancer, I made she she started an anti-depressant and it helped immensely. I waited too long to get my Dad treated after his SCI. He also did very well after starting a medication.

    Why wait?

    In fact, we have some pretty good neuropathic pain meds that treat pain AND depression - Cymbalta, Effexor, to name two. This may be a good way to introduce a treatment to her if you worry she will be resistant to a medication.

    I would consider calling her primary care doctor or her physiatrist - whomever you feel knows her better/is following most closely - and tell them what you told us. Ask whether this might be a good time for an appointment, and for the DOCTOR to address this problem, and discuss options.

    Good luck to you both.
    Last edited by hlh; 08-02-2012 at 10:39 AM.

  5. #15
    Senior Member Cjt8's Avatar
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    Stay in the game. She is at a hard time now and all that has been said above me is so right. Show her our posts and know we are pulling for her.
    Its more of a daily battle rather than recovery, I think I hate that word now.

    And keep telling the girl you love her.
    God that is the most important thing you must do.
    It saved my life more than once.

  6. #16
    Thank you everyone for the responses, they have given me a lot of good insight. I have rented usa hotel out on the lake for the weekend. I think we both need a weekend without roommates and friends. I am really hoping that she will open up and talk to me. I dont want her to keep her fears to herself, I just want to be able to help her feel like she is not alone. I am going to do my best to wooo her and let her know she is loved. We really havent had a night alone since she the accident, our roommates have been here every night since Sam has been home. I think that if its just us she will open up a little more. I am really hoping this will gove her some confidence to share her thoughts and maybe reconnect with me. She has gotten me through so much since we have been together, i just dont want to let her down.

  7. #17
    Senior Member Foolish Old's Avatar
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    Quote Originally Posted by Sam.I.Am View Post
    Thank you everyone for the responses, they have given me a lot of good insight. I have rented usa hotel out on the lake for the weekend. I think we both need a weekend without roommates and friends. I am really hoping that she will open up and talk to me. I dont want her to keep her fears to herself, I just want to be able to help her feel like she is not alone. I am going to do my best to wooo her and let her know she is loved. We really havent had a night alone since she the accident, our roommates have been here every night since Sam has been home. I think that if its just us she will open up a little more. I am really hoping this will gove her some confidence to share her thoughts and maybe reconnect with me. She has gotten me through so much since we have been together, i just dont want to let her down.
    Good that you are going to have some time with just the two of you, and the change of scenery can be very helpful. At the risk of offering unwelcome advice, I'll venture this:

    Don't go on your get-away with expectations that it will clear the air and flip the script. Just enjoy your time together. If your wife wants to talk, so be it. If she just wants to be silent and stare at the lake, sit quietly together and know that she's not ready to have "that" talk. Sometimes rest is the best medicine. Don't worry about a missed exercise or a delay in forming an agreement about how you will go forward.

    Wishing you an enjoyable weekend with good weather.
    Foolish

    "We have met the enemy and he is us."-POGO.

    "I have great faith in fools; self-confidence my friends call it."~Edgar Allan Poe

    "Dream big, you might never wake up!"- Snoop Dogg

  8. #18
    Senior Member SuprSi's Avatar
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    Quote Originally Posted by smashms View Post
    i would make the PT appointments yourself then tell her you have a surprise for her and just take her to therapy.
    Sorry smashms, I think this is a terrible idea. If the relationship wasn't being strained like it is then perhaps that would work, but at the moment I think it would ruin the trust Sam has in Ayden.

    I agree with Foolish old that you shouldn't expect her to open up, she will when she's ready and like he says time is sometimes the best healer. Wishing you all the best!

    Si
    T11 Asia A after near-fatal bike crash.. Just happy to still be here

    No, I didn't loose my mind... It got scared and ran away!!

  9. #19
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    Quote Originally Posted by Foolish Old View Post
    Don't go on your get-away with expectations that it will clear the air and flip the script. Just enjoy your time together. If your wife wants to talk, so be it. If she just wants to be silent and stare at the lake, sit quietly together and know that she's not ready to have "that" talk.
    Getaway is a great idea.

    As said above, I agree... just let yourself get into a quiet cuddling moment and see how she is... let her know u love her & that you're looking fwd to your futures together... if she wants to open up and talk you'll see it in her eyes and her reaction with a subtle mention of the future... or say something like "you know you can talk to me about anything right? I'm here for you... I'm not going anywhere... I love you." It won't take much to get her to talk a little if she's ready... but if she doesn't look like she wants to open up at that moment just enjoy the time as a couple as u normally would. Sometimes a break from reality is the healthiest thing u can give a person.

    GL w/ the weekend

  10. #20
    Senior Member SuprSi's Avatar
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    No worries, for all I know she just need to get stuck in with the physio again, but I think having a break would be more helpful.

    Quote Originally Posted by hlh View Post
    Honestly, I feel like most folks with SCI should be started on an anti-depressant medication while they are in rehab. It made me so sad to see people even in acute rehab fall in deep depression, and basically stop doing rehab..... It is a great loss, and they can't ever really get those crucial months back.

    We are starting to learn that depression is a common symptom in most patients after stroke, heart attack, and spinal cord injury. I never understood why this isn't addressed from the beginning.

    Therapy can be helpful, a support group can be good, but honestly finding one near you or a therapist you click with and who truly understands is rare. Working, going to school, getting out, living life.... all help, and all are hard during this early time.

    So why not get a little extra help?
    As soon as my mom was diagnosed with cancer, I made she she started an anti-depressant and it helped immensely. I waited too long to get my Dad treated after his SCI. He also did very well after starting a medication.

    Why wait?

    In fact, we have some pretty good neuropathic pain meds that treat pain AND depression - Cymbalta, Effexor, to name two. This may be a good way to introduce a treatment to her if you worry she will be resistant to a medication.

    I would consider calling her primary care doctor or her physiatrist - whomever you feel knows her better/is following most closely - and tell them what you told us. Ask whether this might be a good time for an appointment, and for the DOCTOR to address this problem, and discuss options.

    Good luck to you both.
    You are right about quite a lot of early sci patients getting depressed, but I think putting someone on anti-depressants automatically isnt right. Over here all of us had a psychiatric evaluation, which is a bit of a ball ache, but works effectively to see who need counciling/antidepressants. I had a few low moments as everyone does, but generally felt pretty well ballanced. I hate the idea of antidepressants messing with my moods.
    T11 Asia A after near-fatal bike crash.. Just happy to still be here

    No, I didn't loose my mind... It got scared and ran away!!

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