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Thread: wondering if I would be better off dead

  1. #51
    Quote Originally Posted by chris chappell View Post
    hi newbee, i'm chris, nice to meet you.

    i've read through the thread and thought i'd offer a couple of thoughts, suggestions ~ clean, simple, non-emotional.

    1. Welcome to cc, glad you've found us.

    2. Sorry that you've had to join our sci club. Good news, no dues..:d

    3. Hubby needs to realize that his action/reaction to all things associated with the injury are not his and his alone. Everything he does, says, is, and will become effects everyone around him - family, friends, co-workers. Life is truly 10% what happens to us and 90% how we react to it. His reaction will drive the mood, tempo and success or failure of every relationship he encounters and chooses to be in, most importantly your relationship and the family dynamics.

    4. Deep breaths ~ early and often. Obie would agree ~ glass of wine a day!

    5. Implore your husband to join cc. As you are helping him with 100% of your being, so should he invest 100% of himself in learning how to care for himself in every way ~ bowel, bladder, dressing, raising your children, fun, love, intimacy,travel, planning, employment etc. Sci is not an excuse for disengagement but a wake-up call for the opposite. Cc is ultimately a site and community of communication about sci and all of its insults and travails. Embrace it, use its resources as tools to help you. It is not everything. It is not all things to all people. Use what you need, relate to those of a like heart, disposition and kindred spirit. Avoid the junk, bunk and chumps.

    6. A t4 injury is easily manageable. (both of you) ask folks here and in your community. There are numerous sci resources, ideas, methods, strategies. Don't stay in the sci cave. Get out, engage, feel the sun, follow your children's laughter, find yourself, reach out for help, count your blessings and stay the course!

    7. Plan, plan, plan!. I can't emphasize this enough. A well thought out, strategically logical plan will eliminate most of the problems you're experiencing. From grocery stores, to travel, to hotels, to planes, to soccer games, to diet, equipment, etc. It can and will be accomplished with forward thought and preparation (planning). The less you (and your husband) leave to chance the better your life experiences will be. It's not hard, it requires energy, effort, thought, creativity and imagination. It can be done. You're not alone and he's not the first guy injured. Be open. Listen, learn, observe.

    8. Time will help ease the newness and harshness of your family's new reality. Routine helps. Consistency is your new mantra. Details are important. Eventually it becomes second nature. You're still new to this, be patient with yourselves. Again, deep breaths.

    9. Love, love, love. Shower your kids, friends and family with love. The more you give the more you will receive. A smile, a hug, a laugh. Make it a part of daily life.

    10. Take care of you. You are the engine of your life. You may be uncomfortable in the driver's seat right now but you will ride shotgun again and be able to take in the scenery of life once your life is back in balance. Tell your husband that you need him to be strong. You need his leadership, his guidance. You can't row this boat alone.

    I wish you and your family the best of love and success in this journey. We're here to help you ~ lean on us.

    Onward and upward.

    Chris

    wow!!!

  2. #52
    Senior Member
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    Quote Originally Posted by newbee View Post
    Thanks everyone for your wisdom. I appreciate all of your insite very much!
    Someone mentioned that a mountain get away was prob not the best place to go and I agree. We went up for my husbands brothers wedding. They had checked it out for us and I called several times to make sure it would accomidate. We brought our own shower chair etc but still it didnt work. Even at the main lodge the bathroom was too narrow for him to fit through and he had to cath in the parking lot.
    It didnt seem how hard we tried to be prepared things still didnt work out.
    I do hope things will get better in the future. It is just difficult that every attempt we have done to try get away and enjoy some time has ended in disaster. We are trying to make the best of it but feel sometimes that everything is against us.
    Thanks again!
    That was me. I admit, I wondered why "canoeing, fishing, horsebackriding" was the choice for a 1st vacation post sci. It makes sense now. Some of that IS possible (I just spent 3 days tent camping) but for the 1st time out, it is a big step.

    I think you should try again soon tho, don;t let "oh well, we can't go away" become the rule. Try a short vacation, somewhere more accessible?
    T7-8 since Feb 2005

  3. #53
    Quote Originally Posted by newbee View Post
    wow!!!
    That in itself says a lot

  4. #54
    Quote Originally Posted by newbee View Post
    It is just difficult that every attempt we have done to try get away and enjoy some time has ended in disaster. We are trying to make the best of it but feel sometimes that everything is against us.
    Thanks again!
    Personally I've had enough bad experiences with accessibility issues on overnight stays that I won't go anymore. But, what I find enjoyable are day trips. Find a destination within a 3-4 hour drive and get away for the day. It's amazing the sights you'll see on the two-lane highways in your state. It might be enough of a get-away without the issues and stress of an overnighter to brighten things up a bit for you.

  5. #55
    Senior Member McDuff's Avatar
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    Don't give up on getting out, but yeah a simpler trip next time sounds good.

    My first outing post-sci was to a family gathering at a lake resort. It was ~1/2 day away. I only stayed 1 day(out of 7) before we had to come home. Mine was due to pain, and the bed being too high for me to get in, had to have brothers lift me up into it. My body just wasn't up to staying for a week. So we drove home the next day, was sad about it, but was the right answer at the time.

    re: bowel trouble; the first 2.5 years were miserable, accidents all the time. Pre-sci I was one of those people who crapped 3-4 times a day, just had easy moving bowels I guess. My Doc thought my body was trying to keep up with what it was used to. I kept a what-if bag(clothes/depends/chucks/wet wipes/Febreze) with me all the time, even used my brothers and friends beds(using chucks) to clean up so that I would not have to leave. Not something I wanted to do, ask them if I could make use of their personal bed, but it was that or not enjoy life, and they wanted me to stay and knew I would not "wipe out" their bed. I am pretty open, and all my friends/family know I have no control and are cool with it.

    Sometime that year, it changed. My accidents just stopped. My bowels slowed down, and now I have maybe 1-2 a year, making life easier and more enjoyable. Maybe your guy is/was like me, and things will work themselves out too.

    And there is no reason he had to cath in the parking lot. With the "travel caths"/bag cath kits available, he could easily shoo everybody out of your room for a few minutes and cath. He could either tie these shut and drop in a grocery bag(I still use this method at a friends house whose bathrooms are inaccessible, I use their laundry room) or he could have you empty it into the toilet afterwards.

    There are many obstacles out there, but there are usually fairly simple work arounds, once you get the hang of it. Hang in there, it will get better.
    "a T10, who'd Rather be ridin'; than rollin'"

  6. #56
    Thanks Mcduff for the ideas. When he had to cath in the parking lot it was because at the lodge he couldnt get through the door to the bathrooms. The only other rooms were a restuant and a gift shop. We couldnt shoo all of the people staying in the area out. Our room was a bit of a drive down the road. At the time it was easier for him to cath there then load his chair in the car un load his chair. Drive down the road to our cabin, cross the bridge (too steep for him to do on his own) and then into the cabin.
    He even tried to get into the womens bathroom but the door to go in (not the stall door) was too narrow.
    The travel bag cath kits sound interesting. Right now he has his cath supplies in a back pack. He empties into a gatoraid bottle and then we dump it later. Will have to look into these though.
    Thanks for the bp info. We will cross our fingers.

  7. #57
    Senior Member McDuff's Avatar
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    In that case, then I would say y'all did the best workaround possible at the moment. That's a good thing, you tried to overcome at least one obstacle in your way. I have a ramp van and many times have rolled into it for a secluded cath spot.

    Kind of amazing that the Lodge didn't at least have a wide enough door to get in the bathroom, must be an old place.
    "a T10, who'd Rather be ridin'; than rollin'"

  8. #58
    Ditto,great post Chris!I wish I had a way w/ words like you.

    newbee,still wishing you and you're family the best.I have a friend his level and @ 1st she said life was pure hell for her hubby,friends and family.She also had three children,one being under one.She quickly realized she could do more and took control making the best of what was her/there new life and is now genuinely happy,family included.Alot of this is in his hands and everyone reacts differently.Unfortunately bowel and accessibilty issues come w/ the deal + the other extra bonuses.Hopefully though he can find the trick to resolving his bowel problems.Still sending best wishes your way.

  9. #59
    Senior Member
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    Hang in there newbee.

    Our first overnight adventure was our daughters wedding. It was only an hour away, but booked an accessible hotel room to stay over two nights so we could be prepared. Rented a lift (my husband has to transfer with a lift) ~ thought we had it all covered.

    Got there, carpeting on the floor (didn't matter for his power chair, but kind of hard to push the lift), cramped room, and the lift that we rented didn't work.

    Called the company, they sent someone out to fix it. Thought it was fixed. When it came time to get him into the chair for the wedding, it didn't lift him up high enough. After many tears and lots of struggling, he felt so sick from being jostled around that we had to get him right back into bed. He missed the wedding ceremony and so did I (they had waited for us but finally had to go ahead). While I was on my way to the reception the minister came with our daughter and son-in-law and performed the ceremony in the hotel room for my husband ~ so I missed it twice!!

    I soooo understand your frustration. Things will get better, but there are always those days that you feel like you just can't cope anymore.

    Check out the private caregivers form.


    Shelley

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