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chronic pain and family

weepngwillo2wweepngwillo2 Posts: 20
edited 06/11/2012 - 8:58 AM in Chronic Pain
I know that the pain I deal with doesn't occur inside a bubble. My family gets to bear quite a large burden, both emotionally (like when they know I'm hurting but know they can't make it stop), and physically (like when they have to take more responsibility with the chores around the house). How have these things affected you and your family, and how have you addressed them? Have you found ways to stave off resentment, or ways that you communicated that helped them to understand better?


  • Chronic pain and family--that has been my biggest challenge, especially this time of the year. In fact, I actually saw a pain psychologist for a while to help me accept who I am and see that it isn't as bad on my family as I thought it was. So my first suggestion would be to find a good psychologist--mine was amazing. I had the notion in my thick head that psychologists were only for "crazy" people. I was so wrong!

    The first thing she taught me was to stop being so hard on myself. I was always putting myself down for the things I could no longer do, and felt so worthless. However, she helped me to see that I still have worth, and my family still needs me. Learning to cope and to channel the energy that I do have into productive areas has been very good.

    She also taught me that there are some chores around the house that are better left to someone else. I learned to stay away from the things that put me in bed. My family understands that I will do what I can without hurting myself, but that they have to step up and do the rest. It took some training, but they eventually "got it" and have learned that if they want me to be able to do anything with them, they need to help me. For example, washing dishes totally kills my neck and shoulders, but I can put things into the dishwasher. So I put everything into the dishwasher and the rest of the family knows that they need to wash the pans and things that don't go in. I am okay to load the dishwasher, but unloading it seems to bother me more, so that is someone else's job. Sweeping is bad for me, and it used to be that I would push myself and do it. Consequently, I was unable to do anything else. Now they know that they need to sweep and vacuum if they want me to be up with them. Otherwise, I end up laying down in my bedroom. Cleaning the bathtub is out, but wiping out the sink is okay, so we work as a team on the bathroom. I wipe down the toilet daily; the kids do a more thorough cleaning on the weekend. Anything that involves looking down and working with my arms for any period of time really bothers me and causes intense muscle spasming. So someone else peels potatoes and stuff like that, yet I am okay to cook them.

    The first part in accomplishing this stuff was coming to terms with my limitations. Once I did that, I have been able to adapt. My therapist helped me to see that although I am not the old Cindy, I am still the person that my family loves and needs. I used to be supermom--going to every activity, volunteering for many different service things, sewing prom dresses and halloween costumes, making beautifully decorated cakes, having their friends at our house all the time, etc. Now I focus on doing the very basic things, and that is okay too. We still have friends over--I just don't carpool them or do extravagant activities for them.

    You didn't say the age of your children, but they can learn from a young age to help out. They understand things much better than I gave my children credit for. Sometimes they balked at having to take their turn at cleaning, but that is normal with all children. Sometimes they do get on the life isn't fair kick. But I think my children have become much more responsible people because of our family challenges. My spine injury didn't just effect me, and the rest of the family had to learn to cope as much as I did. When I was able to sit and play a board game again, they were thrilled. Had they not helped me out, the board game would not have happened.

    Try to be aware of their feelings, but teach them that in order for mommy to be able to play (or watch a movie, etc), they need to help you. Show them that you will do what you can without hurting yourself. Don't just send them off to do their chores; do yours at the same time if possible. Everyone can do something, and together you can make it fun.

    Feel free to ask me anything else. I'm not a pro at this, but I have learned how to deal with it (at least most days).

    Surviving chronic pain one day at a time, praying for a reprieve because living another 40 years like this doesn't sound too fun!
  • I would venture a guess that could be part of my issue. I still insist on doing it all. I am way OCD about my house being neat and tidy and it's fair sized, however my son does clean up after himself so it isn't too bad. I vacumn everyday and would never be able to get in my bed unless it was made. I'm a nutcase. My horse must be groomed, fed, watered and cared for along with the rest of the rescue/farm animals and I also work 50 hours a week and cook a 4 course meal every night (that is my relaxation, I love to cook). Well, that and drinking... I know I drink wayyy too much - especially with the drugs. I have been putting off a liver test for years for that very reason. My liver was fine, but there were some blood abnormalities and my doc was on to me. He asked me if I was an alki and I said - oh No, not me - it goes down just fine... I also found that I have lupus (last friday) and have some kidney damage because of it. It probably won't stop me tho, I am miserable - but I feel that I just gotta get it done and work to that end. I have such a ridiculous sick drive to get it all done - I wish I didn't, I really do but I can't stop it. My son is great about helping out, but I want to be the one doing all the crap I guess. I don't think any of you should be down on yourselves when you can't do all the housework or chores, or whatever. I'm friggin nuts! I am pretty sure if I let myself relax a little, I'd probably need half the meds, but I just can't do it. I think I have given up so much already that is fun - how could I give up chores? Well, actually i enjoy doing those too - ya, I'm nuts... take care buddies!
  • My wife ends up with way more chores than should be hers, I do what I can, trying not to put myself in bed for days from pain. My youngest son, who just got married and had a baby boy this year has been our godsend. With just a call he comes to help out without complaint. He was never the one to jump in and help, and now he is there in a heartbeat. Plus I get the added plus of getting to see my little grandson(just over a month old). I feel guilty as hell at times, but I have had to realize that the body I live in will not allow me to do what I used to and do what I can to take some of the burden off of the family where I can, and realize that many places I just can't be the one to do a particular chore.
  • SavageSavage United StatesPosts: 5,427
    ...just awesome! When the family communicates ... it gives each member the ability to understand. The better they understand, the more likely to pitch in.

    I would like to add that I also gave everyone permission to talk with others about the pressures they may be feeling. Talk with me of course, but they may not want to hurt my feelings..so other parent, friends, friend's parents...and my spouse to talk it out with his friends, too.

    Get whatever out. Then maybe they get understanding, a little well deserved appreciation for all they do, and maybe a different perspective so they can rejoin feeling refreshed instead feeling maybe resentful... like the life sucked out of them.

    It is so not easy under the best of circumstances, but you even asking the question is a loving act. And a loving family member....priceless!
    Spine-Health Moderator
    Please read my medical history at: Medical History

  • it's been a mixed reaction within my family. I was already injured when I met my husband. He knows me with the problems and dis-advantages that comes with it. We didn't need to argue over what I was feeling and not. At that point I was in and out of a wheel-chair. I still am when the pain is just awful. It rarely happens but it does seem to limit the pressures and strain on my back. It's usually the other way; standing relieves more pain than does sitting. I had, under laws available in the country where I was living, been offered home-aid. A person came to my house twice a week and helped with cleaning, some grocery shopping. We now, in the US, have the ability to pay for someone to come in and clean for a few hours a week. It helps my husband and keeps our relationship in a sense of equality. I have seen several relationships "tilting" when the household chores etc., is placed on one person.

    It's a totally different story with the rest of my family (parents, siblings, other relatives). They often refer to me as I was before the injuries. There's been very little understanding of the pain, the general discomfort and, ufortunately, the full disability. The pain management, too, came under discussion. After some time on buprenorphine, I went on Durogesic patches and has stayed on it. The choice of medicine was also an area of discussion. I could become an ADDICT, couldn't I just try, well, advil? Um, no, not if I don't want to be rolling around on the floor in total agony.
    It would have been helpful could someone just acknowledge that yes, breaking your back in several places IS a serious injury. It took me close to a year to walk again and even the wheelchair was under debate. If I just trained hard enough, I'd get out of it sooner. Only I already had made myself overtrain and had had a relapse in a screw almost coming lose. I can't really lift anything above 2 pounds., and never did go back to work full-time. The advice I've been getting has been to just pull myself together.
  • I am continuously told it is mind over matter, that regardless of pain or consequences there are things that have to be done, that other people have pain and they still "do what needs to be done", that I just sit around feeling sorry for myself and tell people I can't do things just to be lazy and get out of responsibilities.
    In the end it makes me feel like an outsider in my own home, that I am a burden and simply taking up space that could be better used. I have been told to ask for help when I need it, and then yelled at for starting things I knew I couldn't finish by myself.
    After all of it when I talk about leaving my husband, I am told that he knows he is an asshole, but the real problems in the relationship are mine. That he knows he has anger and attitude problems but he can't change by himself, that I need to stand up to him more and work to better myself in order for him to change.
    Anyone have advice?
  • I am married to the man who was driving when the original car accident happened.

    Anyone have tips on rebuilding self worth in light of limitations?
  • If you can afford it - kick his ass to the curb. End of discussion.
  • weep, Hi and welcome to SH :wave:

    My hubby is a jackbut! No really he is, most of the regulars here know my situation and they would all agree with me lol

    He tells me "just fing tell me when you need my help" (makes you feel warm and cozy all over the way he puts it) BUT when I do ask he throws a fit and I mean a fit. screams, yells, slams, bangs. So I do almost everything myself or it does not get done. If it is something I can't do and it must be done then I push him to do it and pay the price of a fight with him.

    FINALLY with the help of several members here I am at peace with myself about my limits, and no longer give a rats but about his reactions. I just tell him what needs done when I am forced to ask for his help and then walk away and remove myself from him.

    Standing up to him made no difference, it just made more fights. I have learned I can only "control" myself and no one else ;)

    It did not happen over night, it was a process with many difficult days. But with a LOT of hand holding from the members here I am now "OK" :)

    If you want to buddy up with me I will be happy to be your hand holder and support you through this.

    Can you tell us more about yourself please, age, children, work history, yrs married, treatments and anything else that can help us help you that you feel comfortable sharing :)

    *Thread hijack*
    MOUSE! You are a crazy women!!!!!! lol Seriously! I wish I could do 1/2 of what you do. I notice nothing said about your hubby, did you guys part ways? I have been gone for awhile and then returned just a little here and there so I may have missed it if you posted.
    L1 - S2 "gone" useless in 1 way or another. DDD. RA. Bone Spurs. Tons of nerve damage/issues. Stenosis. Both knees replaced. 50 yrs old. I had a great fall (hence my user name) at age 41 and it has been a domino effect every since.
  • I find myself asking that same question, wondering how to be a good wife and mother. I'm 28, I'm a SAHM and I have 3 kids between 3 and 10, my 7 yr old daughter has ADHD and my life is a new kind of hell. I only started seeking help in April, but have been dealing with pain since July 2008 when my son was born. In May they found a tear and 2 bulged disks in my spine, @ 2 months later I was also diagnosed with fibromyalgia. When I met my husband, I was young and healthy, I cooked and cleaned and I raised my babies with no help from anyone with no problem, now I'm lucky to get out of bed. My husband has to work all day, come home, clean up whatever the kids haven't done or done properly, cook, get the kids in bed go to bed and wake up to do it all over again. Guilt is a huge issue for me, idk how to be this person, idk how to tell my kids over and over that I can't play because I'm hurting.
    I had a medial branch block a week ago, I've had so much hope coming into this procedure and now m pain has at least doubled. My daughter asked me to sit by her at the dinner table (I haven't been able to sit with my family for dinner because the chairs hurt my back), I had to tell her no because of my back, she asked 'well didn't you get those shots in your back?' and of course then I had to explain that I did have shots and it was supposed to help, but it didn't and so far, has only made things worse!
    I've dealt with so many emotions, fear, anger, depression, guilt...the list goes on. I know its fairly new, I call them my life sentences ( my back and fibro), I know I need time to figure it all out, learn how to live with it, learn how to be this new version of myself, but idk how.
    Anyway, I'm really glad I found this forum! The worst part is not having anyone to talk to about everything.
  • I just think more often than not - you just have to get to a pain doc and get the meds. There is no choice. Life VS. NO life, or poor quality of life, stuck in bed, hurting so bad you wish you were dead, not being able to do anything. What life is that? I can't and won't do it. People can judge all they want, sometimes drugs are the only answer. I'd rather be dependent than miserable...
  • Mouse said it best, in post #9 and #12.
    My husband doesn't have any choice. This is how it is. Either he lives with it or he doesn't. If he would toss a hizzy fit every now and then over basically nothing, I wouldn't speak to him for a week. Fortunately this has never happened.

    And mind over matter... That won't work, no matter how much effort you put into it. The more effort put on just getting by because of a notion that you just need to pull yourself together, the more likely it is that you'll turn out even more depressed.

    I really wish you all the best in this!
  • Sometimes I wonder how I am going to survive another 20 years or so with unending pain. My new husband asked me if I am ever out of pain, and I told him only when I am unconscious! He has chronic fatigue syndrome and is amazingly supportive and helpful. He has been dealing with major CFS disabilities for 30 years, and I think I am only now coming to terms with the fact there aren't any miracle cures out there now. My days of being super athlete, working, and functioning as I did are over. I am now recreating what I can and cannot do. My last husband dumped for a younger more healthy version who subsequently left him when she found out he lied about being still married, because he did not want the hassle and inconvenience my disability brought into our lives.

    Hang in, and know that you are not alone. No easy answers that work for everyone. I try to take it one day at a time, be kind to my human failings, ask for help, and be in gratitude for what I do have... A great new husband and wonderful kids who love me, and fill me with pride every day.
  • Just by being here you have found people to talk about everything to. You get the added benefits that we can give an outside perspective on your interpersonal issues, and an inside perspective on dealing with pain and the issues that cause it. I am not a 'regular' mainly because I am still dealing with regular bouts of denial. I get to a place where I am sick of admitting the things I deal with, the support both physical and mental that I really do need, and the pain I am in and try to pretend it isn't as bad as it seems. Eventually I get back to reality.....kind of like my reappearance now.....I haven't been here to a month or two. I will send a buddy request....I am not the most reliable, but I do have empathy for your situation. You don't have to accept, but you could look at it as an expansion of your support net.......good luck!
  • As Cindy said, you have to be honest with yourself and communicate your needs, hopes and fears with all those attempting to help you. It is not showing weakness but strength, when you have to admit to yourself you can no longer do the things you once did and ask for help, I have said here before, pain is a team event and it is up to us who in on our team and who is not. In most things we have learned restraint or had it imposed upon us and to that extent I have a mental list of things I will no longer do, this is from the Chronic Pain Handbook thread, the good doctor suggest that we do everything possible to make the pain less and nothing to make it worse.

    I pace well and try to keep under that radar of increased pain, I know if I exceed that illusive or imaginary threshold that is pain in the bank, to compensate I do more of the things I can do and make the things that are important to my wife my priorities , I cannot managed pain alone.

    My three teenagers have lived through my pain, in some way they have lost out, they have gained from my time and desire to help them as much as possible, children remember time together and it can be special and fun you have to make it so, even if after you have some privacy and cry like a baby, we should try not to make them feel guilty.

    Being a good mother is not what you think it is, ask your children how to have fun and help them, do these things together, however infrequent. My wife is very supportive and it cannot be easy when in a marriage this is not the case, chronic pain is not something just to be endured or surmounted and if someone cared for you they would say nice things and be helpful. In contrast to popular understanding, those who help us do not have to be in pain to help us or even get it, they just have to help as simple as that. I equate individuals on how they can help me, those are my standards, it is unfortunate if those promised to care to our needs for better or worse are not up to the job, they need help not you. The BIGGEST impact on managing pain are those family relationships and how supportive they are, with strong and loving support nothing seems impossible.

    Pain makes us more giving, understanding and compassionate, mothers here are the epitome of care and thoughtfulness, unselfishly giving beyond expectation while in need themselves and I for one salute you all, I was a stay at home dad of three children aged 7,3,2 for many years, I get it.

    John, take care and be kind to yourself.
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