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How to get through the hard days

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    How to get through the hard days

    Boy oh boy, everything has been wonderful the past couple of days despite the fact that the furnace went out and Joe was home all week with a sinus infection.
    This morning, I woke up with this hopeless, frustrated feeling. It's stuck around all day. How do you get through these tough days? I just hope it will be better tomorrow. Also, how do you handle your spouse's depressed moods?


    Here's what I do Stacey . . .

    1. Come to CareCure [img]/forum/images/smilies/mad.gif[/img]

    2. Listen to my favorite music . . . loud with headphones . . . [img]/forum/images/smilies/cool.gif[/img]

    3. Breathe deeply . . . a little Yoga thing [img]/forum/images/smilies/tongue.gif[/img]

    4. Drink a little wine on a Saturday nite . . . no not too much [img]/forum/images/smilies/eek.gif[/img] Well maybe sometimes . . .

    5. Watch "My Great Big Fat Greek Wedding" with my youngest daughter (she keeps asking if we're Greek . . . I dunno) [img]/forum/images/smilies/biggrin.gif[/img]

    7. Come to CareCure and blow off some more steam! [img]/forum/images/smilies/rolleyes.gif[/img]

    Whadda ya know its another day!

    Sometimes it hangs around more than a day or even two. I know exactly what you're talking about . . . hang in there . . .

    What happened to our families should never happen, even to Saddam himself - I'll share this thought with you, I've even thought death would have been less complicated to deal with . . . but . . . this is our lives . . . sometimes I'm so damm proud of us all, my family, myself . . . I've learned alot about myself - some things I'm not so proud of - but I get up every morning and try again . . . What else is there to do?

    Be well! You are not alone!
    ~ Be the change you wish to see in the world ~ Mahatma Gandi

    " calling all Angels ...... calling all Angels ....walk me through this one .. don't leave me alone .... calling all Angels .... calling all Angels .... we're tryin' and we're hopin' cause we're not sure how ....... this .... goes ..."
    Jane Siberry


      Forgot to add - when Bill is in one of those moods (which is alot I might add) I just sort of (pardon me for saying it) ignore it/him and carry on with life as usual! We have 4 kids 3 of whom are teens, what else can I do! I hope by my doing this it leaves him to take responsibility for himself more. I have enough to deal with without taking on his mood as well.

      Sometimes when I'm able I'll do a Reiki treatment on his back and treat him extra nice too!! I'm only human and after all I can still walk (catch the guilt thing happening there) . . . we've been married 25+ years . . . can't imagine life without him . . . damm SCI . . . makes me want to spit . . . [img]/forum/images/smilies/mad.gif[/img]
      ~ Be the change you wish to see in the world ~ Mahatma Gandi

      " calling all Angels ...... calling all Angels ....walk me through this one .. don't leave me alone .... calling all Angels .... calling all Angels .... we're tryin' and we're hopin' cause we're not sure how ....... this .... goes ..."
      Jane Siberry


        Stacey i didn't have to handle my spouses moods , she did that by packing up and leaving . [img]/forum/images/smilies/biggrin.gif[/img]

        thank you

        every day i wake up is a good one .
        Every day I wake up is a good one .


          HI, Stacey,

          I still wake up sometimes with those 'frustated, hopeless' feelings; when that happens, I try to post a mental list of where I am now, as compared to where I was at the time of Matt's accident - or 1 year later, or 2. The differences in my life are so great, that I'm usually able to suck it up and get on with it!

          But - it's important to realize that those feelings are okay also, just as the guilt and anger gremlins. Recognize them for what they are, and just try to let 'em slide.

          As for dealing with hubbie's moods - remember I'm not a spouse, but a mom - remember he's entitled to his moods, too; just as long as they don't intrude on your space and feelings. I found out pretty quickly how to dissociate myself when Matt was in a snit, and I just became the 'aide'; did my duties physically, let him know he was being a little s**t, and left the room.

          This to Dogger - Honestly, you are such a sweetie, I find it hard to believe anyone would leave you!

          Tough times don't last - tough people do.


            Good morning,
            Thanks to you all for your help. I really don't know whatI would do without this place. I am so thankful to have stumbled across it. Everyone who is touched by sci should be given this site before they leave the hospital. I know those first few months would have been a little easier had I had someone to talk to then.
            No one is up yet in the house , but I am hoping for a better day.
            Obeione, I learned Reiki to try to help him. It's pretty cool. IT'll will usually help him to relax. I'm just in the beginning and need a lot of practice. HE won't always let me practice on him, so the dog gets a treat. She loves it. I've also had the thought that death would have been so much easier to deal with, but I also, can't imagine life without him.

            Dogger, I can't imagine how someone could possibly leave. It's hell, but I still love him and could never live with myself if I left.

            Marmalady, I can't possibly imagine going through this with a child. After Joe's accident, I have been so paranoid with the kids. I see them out on their skateboards or my 12 year old who plays football, and I want to drag them in the house and make them sit on the couch and watch tv.

            Thanks again for the help. I'm so glad that you are all here, but I wish that none of us had to be......


              I forgot something earlier. Does anyone know of a remote control for people who have limited hand use? This channel changing stuff is driving me crazy! I'm not much for tv, and he loves to channel surf. We have satellite, so Dear God, there are five hundred channels to go through! I would appreciate any help. He can use his fingers on his right hand, but doesn't have a lot of dexterity to use the tiny buttons or the strength yet to push them down.
              Thanks, Stacey


                Stacey, first the moods. Everyone here is right -- if you take them on as well as everything else being thrown at you and everything that has suddenly become your responsibility too, you'll crash and burn. You have to find a way to dissociate yourself as Jackie said. It's easier said than done, it causes guilt and it hurts, but it has to be done.

                As for the remote -- there are universal remotes with bigger buttons that might help him handle it on his own. You could attach velcro on the back and on either his w/c or whatever chair he sits in so that it wouldn't fall. Some of them can be a little pricey, but I think that depends on all the options and bells and whistles. YOu might just shop around and see.

                AS for finger strength, heaven knows I'm not a therapist (and didn't even play one on tv), but would one of those little balls that you squeeze for hand strength help that? Or (and I really don't know about this) when Julian was having really bad arthritis in his fingers, a friend from China brought some of those big "jade" balls that you roll around for finger dexterity and it actually seemed to help some. Of course he didn't keep it up, but that's the man in him.

                Good Luck!!!!!!


                  Oh, that hopeless, frustrated feeling--

                  Like when I say I'm going to go somewhere, just because I MUST have a half an hour to myself, and one of the girls wants to come . . . or when, in the early days, I felt like I was dragging an entire train along with me everywhere, and every last little outing took forever to organize . . . the kids silent and sad watching him take 5 minutes to get out of the chair and into the car . . . finally arriving wherever we were going, only to have him need another 20 minutes to overcome sleepiness, or dizziness, or whatever.

                  I spent 12 years in a support group for families of alcoholics, though, and what I got from those people has held me together pretty well, along with a great therapist who lets me get away with nothing. I know how to look things in the face. I know how to not take other people's moods personally. I know how to calm myself down and call things by their right names. (Okay, I know HOW to do all this, but I'm not claiming I actually always DO it!)

                  When he was about as far post-injury as Joe is now, Stacey, I took a whole weekend off. Rented myself a nice little room in Seattle, did a lot of walking, ate in restaurants, read, listened to baseball. It felt amazing to be back in my own body and head, to leave him and the kids to find their own way of being together. It was hard, because of course I was doing exactly what he couldn't: taking a break from it. But it was good, because I needed evidence that they could all get along without me. The hopeless, frustrated feeling is, for me, about thinking I'm trapped. I'm not!

                  Hope this day is better---


                  And by the way, dogger, I'm with Marmalady--your ex must be bonkers.


                    In my life w/ incomplete c5-6 SCI, everytime I buy something adaptive like the new remote, I get enough improvement that I don't need it. So go buy it! (This drives my husband insane, a house full of stuff I don't use.) I wish I could explain to you how much improvement time he has left. When you're in it, I know it seems so slow. Every day at this stage is a chance for improvement. Did you read Dr. Wise's article under the Acute SCI heading? The potential for progress is so impressive. Can he roll himself over in bed yet? With him standing, and finger function, if he can't you need to ask his therapists to work on that specifically. The velcro on the remote is a great idea.

                    Sorry, I'm a fixer. I think we should always fix the problem, and believe me, in this body I know that's not always an option. But he's doing so WELL. He'll be so much more independent in 6 months. He's about like Dogger and I were. And nobody helps us do anything.
                    Keep your chin up and this site bookmarked. Many's the time it's saved me, too.

                    Dogger, I don't know her. Triplets and a man w/ SCI probably looked like a lot. I can't help being amazed at what a coward she was. Another thing with fixers, we don't get cowardice. No one in this forum is a coward, obviously. I bet she regrets it now. How does she expect to explain that to your kids? I'd hate to be in her shoes.

                    So there's my wisdom for the day. Stacey, I pray your day looks brighter today.
                    Does This Wheelchair Make My Ass Look Fat?


                      Bethany, I didn't tell you this before, because I figured you would think I was some kind of nut. But I actually found this site because of you. I had seen a post from you on another site. You were the first person I had ever heard of that was able to walk after an sci. I read all of your posts and you talked about this site.

                      You gave me hope. You and Dogger are amazing to me. I tell Joe about you all the time. He doesn't always want to hear it, though. I think sometimes he is afraid of hoping too much, that it won't happen for him. He's afraid that his recovery will just stop. Anyhow, thanks everyone. My family thanks you too. I'm much more calm after coming to this site. A few minutes ago I was a stark raving idiot, screaming about the snow being tracked all over the house ..........
                      Thanks , STAcey


                        There you go, girl. You have MADE MY DAY. I think I found your remote control. Go to http://ecom1.sammonspreston Then in search, put in remote controls Click on Tek Partner universal remote. Bookmark this Sammons Preston catalog.

                        Nobody can say if your husband will walk. What I always say is, we know for sure nobody walks if they don't try. It's too bad he won't come to this site. When I was first hurt it seemed kind of depressing, the reality of the deal. There are quite a few more walking quads on this site than Dogger and me. We're just vocal.

                        Tell your husband about the statistics for improvement in Dr. Wise's article. Those are cold hard facts from a respected researcher. At Rutger University, no less.

                        I am so glad I could help, I just can't tell you.

                        Dogger-Hope you didn't mind my speaking for you.
                        Does This Wheelchair Make My Ass Look Fat?


                          Stacey and Betheny, your story sent chills down my spine. How cool!! It's amazing how many good things have come from this site...and continue to pop up each day. We could all write books, couldn't we?

                          As for getting through the hard days, I really can't add anything new or profound. I'm a mom, like Jackie...BTW, Jackie's description of Matt in a snit made me laugh out loud. Bri is so seldom in a snit, or bitchy...but when she is, I just look at her (saying silently, "I can SEE the aliens inhabiting your body, girlfriend!!") and walk out.

                          I guess I'd say, just keep coming here Stacey; it's a tremendous help.


                          P.S. Should I tell dogger he's great and his ex is crazy, or is his head big enough as it is??? [img]/forum/images/smilies/wink.gif[/img]
                          "God warns us not to love any earthly thing above Himself, and yet He sets in a mother's heart such a fierce passion for her babes that I do not comprehend how He can test us so."
                          ~Geraldine Brooks, "Year of Wonders"

                          "Be kind...for everyone you meet is fighting a great battle."
                          ~Philo of Alexandria


                            Isn't it interesting how all the women are crazy about Dogger? And yep, you can number me in his fan club too!

                            By the way Dogger, great jokes today!


                              TV remote

                              Here is the one we have in the day room where I work:


                              There are a number of environmental control units (ECUs) that will control a television (as well as hospital beds, drapes, radios, fans, etc.) with either simple switches or voice control, but of course these systems are fairly expensive.

                              That Sammons link did not work for me. This is the one I use: