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Thread: How do you deal with the pain?

  1. #1

    How do you deal with the pain?

    I cannot stand it when my bf is in pain. Its everyday and its all the time, but it wears on me like crazy. He throws things when he gets frustrated and I can tell he wants to cry sometimes, but doesnt because...I dont know, he's too strong or something to cry. I wish he would cry and I wish he would stop hurting. I just want the pain to stop for one day, thats all I want for him right now. There were days when I would mourn his loss of sensation or movement, but now I just want the pain to stop. I wish his good days happened more often than his bad days. I wish that he didnt get so frustrated so easily. I wish that he didnt feel bad asking me for help with things. A lot of the time I feel like my hands are tied and there is nothing I can do. I just want to take his pain away just for a whole day, thats all. I wish a lot these days. I love him so much, and his pain is felt by me, as much as it can be. Everyday I wake up and hope that he is going to feel ok. Maybe not great, but at least not a 'take a nap because sleeping is a way to escape the pain' kind of day.

    Anyone else feel like this?

  2. #2
    Ms Scarlet

    from my own experience and reading post from this site, I think pain affects ppl differently as no two ppl respond the same to pain meds etc. If this is a recent injury it may take time to adjust to life with dis. As time passes, the attitude changes! After rereading your post, I think in the long run your caring and compassion will be his best relief ever.

    hang in there


  3. #3
    It isnt a super recent injury. Two years. It just seems that all he feels is pain. Ocassionally things are good, but mostly just pain. Its not something that runs our relationship or anything, but it bothers me quite a bit. Thanks for the support. I need that a lot. I dont get a whole lot from the family back home or guys kinda become my only support system sometimes and you are all wonderful. I just get so sad and angry sometimes I cant stand it.

  4. #4
    It's always harder for us, I think, to see our loved ones in pain, than the pain they are feeling (hope that made sense!).

    Has he had a pain eval - is he on pain meds - have you/he been up on the Pain forum here, to maybe get some direction?

    As Digger said, your caring for him is going to do more in the long run to help him than any pharmaceutical painkiller. Just be sure you keep some time in your heart for you, to remember who you are separate from him, and to just give yourself some breathing time.

    ((((Hugs)))) Jackie

    Tough times don't last - tough people do.

  5. #5
    he should be in pain management and they should be having him try different meds,
    neurotin saved my ass for over a year, without it i would have been on high opiates for ever and non functioning.
    maybe he needs to try different medications, the medication all have side effects but at least they stop the pain, at least with me, no reason to be in pain unless all medications and treatment have been exhuasted. you need to visit the pain forom..

  6. #6
    He actually is on pain meds. Neurontin, oxycontin, etc... It just seems that no matter what happens he is in pain everyday. I try to be supportive as much as possible, but it is starting to wear on me a bit. I cant stand to watch him whince in pain just to get from the living room to the bedroom. It seems like every push is painful most of the time for him and I hate it. I just want it to stop...thats all.

    Marmalady, that made perfect sense. He has told me before that he is used to the pain, and that its just something else to live and deal with. But to me its a big deal. Its hard to watch a person you love make those painful faces. I guess one day I will get over it and be ok....but today is not that day.

    I think it is depressing to him too...he spends a lot of time either sleeping or throwing himself into projects or being upset. I dont know if he will ever be 'ok' with his injury, but it seems like he is still really angry and depressed about it. Lots of time is spent talking about things he will never do, or doesnt want to do anymore because it wouldnt be the same. It brings me down...because I dont want him to be down. But I guess that cant be helped sometimes.

    Dont get me wrong, things are really good usually, but I dont want to show him how upset it makes me sometimes. There are times when I think, "is this worth it?" But then I always think about how wonderful a guy he is, and how much I love him and it makes me smile...if I didnt care so much, it wouldnt hurt so damn much. I cant vent really anywhere else so you guys become my sounding board. Thanks again for your support, I need all I can get right now.

  7. #7
    Ms Scarlett, your support is admirable. Hang in there.

    A couple of thoughts, suggestions.

    1. I agree with Digger. With time it usually gets easier.

    2. The way that I deal with my sci pain is twofold. Psychologically I tell myself this quote: "pain is weakness leaving the body". So everyday a little more weakness leaves and a little more strength comes in. Secondly, exercise - a lot of it. The more I exercise the better I feel. It makes a HUGE difference with sci sufferers. Exercise is my pain med. Pharmaceuticals are necessary for some but I think that they are sometimes over prescribed. Weening off them early on was the best thing I could've done.

    3. Maybe gently remind him of what he can do vs. his focusing on what he can't do. Make a list. Generally, I've found, that life's accomplishments are 90% from the neck up. However, if he's fixated on the physical I think its important for him to understand that most physical activities can be accomplished with enough preparation and adaptive equipment. He has to be willing to try though and realize that there are adjustments to be made.

    4. Maybe try and get him to at least "lurk" on this site. He'll quickly realize that there are many in the sci community who are living emotionally, physically, and psychologically fulfilling lives while managing the challenges of sci.

    Good luck and god bless.

    Peace, Onward and Upward.

  8. #8
    He actually does check this site out. Im not gonna say what his name is on here, but he's around. I just dont think he knows that I post here.

    I know that excercise is a good thing, but he is usually so busy with everything, projects, things like that...that it makes it almost impossible to add one more thing to the schedule. I know that he is looking into getting one of those bikes, but I fear that it will just collect dust around the house. Is that what you mean when you talk about excercise? What else can he do?

    I also fear that he is getting in a rut of 'everything I like to do involves physical activity that I cant do.' Usually its not like this, and usually he finds quite a bit to do that is fun, or at least entertaining for the moment, but most of it isnt the kind of thing that a person can look back on later in life and think, 'wow that was cool.'

    We have been together for almost a year now, and I just recently found myself becoming very angry about his injury. I wasnt with him when it happened, we met later, but I find myself very sad and upset lately. I guess it built up in me for a while, and is finding a way out now, but I found myself crying at work because I was thinking about something I wanted to do with him and realized that he would probably not want to go because of the effort involved and the fact that it 'wouldnt be the same.' It made me so sad. I know that there is some adjusting that we need to do to this 'new life' but I think that everytime he has to use adaptive equipment or modify something he has to cope a little more with how much his life has changed...and I dont think he is dealing with it so well sometimes.

    Thanks again for all your support. You guys help me be a supportive girlfriend with all your helps me realize that I am not the only one feeling this way sometimes, and that it will get better.

  9. #9
    Even though you weren't there when he was injured, it sounds as tho you're going through the same sense of loss and mourning that all of us who were there go through. And that's perfectly fine. It's perfectly normal to feel sadness and grief and to allow it to show - just as long as you don't let it run you over. As I said before, it's important to keep some time for yourself, both in your heart and in your day; it will only make things better for both of you!

    And - if the tears won't stop, and you can't seem to get a grip on your feelings, you might want to talk to a counselor or another close friend, or even a pastor or one of his family members if that's in the picture. Sometimes just talking helps give a perspective on.

    (HUGS) Jackie

    Tough times don't last - tough people do.

  10. #10
    Originally posted by Ms Scarlett:

    He actually is on pain meds. Neurontin, oxycontin, etc... .
    it just doenst sound like its working well, maybe he needs his dosage adjusted or try another combo. i went from 300 to 3200 a day of neurotin over a peroid of a 12 months before i got to level where i much less breakthrough pain, which the other med were able to handle.

    i know how damaging it is to the mind and how cranky i got the last month when i was walking on a broken foot, it wears on you, when i removed the pain my mind and mood were so much better. constant pain is very depressing , there are a couple posters here that have tried many combos to beat it without success, but you have to try different meds, i tried neurontin, gabitril, zonegran and topomax for neuro pain, with elavil in evening to help with sleep and the added nighttime pain that alwasy woke me up at 2am....and it worked very well.
    believe me if i need a duro patch i will ask for a patch.
    the next step they want to do with me is the neurostimulattter implanted, i wonder how its going to look in my 6 pack abs!

    the anti sezure meds dont work for everybody that why doasge nad different ones need to be tried. i have learned to medicate rather than torture myself, the pain is chronic its not going away. a good nites sleep is important to my mind
    i got lucky with drug combinations and was living with a lot less pain and was much happier. some ot the other here havent had relif for long, but are still trying different things. i also was doing acupunture 2x a week that helped a lot for neuropathic pain.

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