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How do you go on?

Humble_PieHHumble_Pie Posts: 75
edited 06/11/2012 - 8:47 AM in Depression and Coping
I spend most of my time on the Chronic Pain board because thats usually what I'm dealing with. Lately, well, ever since this all began about 3.5 years ago, my focus has been my pain. I have a family. A wonderful wife and 3 wonderful children that are all fairly young. I used to be an extremely active, athletic person as it seems many people on here were at one time. I made a good living.
Now I am trying to sort out my life. Doctor bills are racking up like crazy. My wonderful wife has gone back to work after 14 years and busts her butt every day. My kids see me now as a father in constant pain that doesn't get off the recliner much and can't do much of anything anymore except what I used to tell them not to do all the time and thats watch tv.
I'm very stubborn and with all the dr bills we already have, I don't want to incur more than I have to but I really think I need some professional counselling. I've never had it before but I have gone into such a funk at times that I'm afraid I may push away the only thing that means anything to me in this life and thats my family. I've just celebrated my 20th anniversary and wouldn't ever want anyone other than my current spouse and children.
I get these times where I feel like I'm such a failure that if I don't find a way to do active things with them like I used to that they won't want me anymore. They have assured me that it doesn't mean anything to them but I am the one that seems to have the block I do alright for a while but then all of a sudden I have these times where I almost become frantic trying to take my wife out to do something special, my kids, etc and frankly, it freaks them out. When they act suspicious and reassure me that they're fine, I start to get weird thoughts in my head like my wife doesn't love me or will look for someone who is more able to meet her needs. She is definitely not that type of person and it is mainly just me that gets fired up, even suicidal at times.
How do people learn to cope with their disabilities? I've got fusions at C4 - C5 and C6 - C7 along with L4 - S1 and the lower back operations have really caused my life to spiral downward. I guess I just keep thinking that things are going to get better and this will all go back to normal but then it doesn't happen and I start to think about how I am going to live my life if this is the best I ever get?
Sorry for the novel folks. What do you do? How do you live with yourself when you can't keep the house up? Laundry? Dinner? Sports Events? Seeems like about everything?
I couldn't bear to lose my family then on the other hand, I feel like I'm trapping them by forcing them to take care of me.

Advice Anyone? Thanks In Advance.


  • Hey Mr. Pie,
    I do understand a lot of what you say you are feeling. I am sorry that you have to endure these emotional problems in addition to you back pain. I believe it is normal to have some issues when you suffer chronic pain, at least that is true for me. I do think you should go talk to a professional. The older I get the more I trust that little voice in my head, so if you feel that you need to see someone maybe you should. I asked for a referal to see a pain psychologist after my fusion. I was a real mess at my first visit. The Doctor prescribed an anti-depressant. On my secound visit I felt so much better. The doctor told me that he felt that I did not need to see him anymore, unless I felt I needed him. I have done pretty good since then. Since I have gone back to work I have had a bit of a spike in my mental unrest. I hate that I am in a position that I had to go back to work. I struggle with daily pain. The odd thing is I have had a few moments that I have felt good, but that seems to make me feel more depressed because as much as I want to I cannot sustain that feeling. I don't get excited to feel good, because I know that the pain will return. I also spent most of my off time at home in my chair. So, I guess I am trying to tell you that you are not alone. Listen to that voice in your head, and trust your feelings. You say you know that your wife and kids are not going to abandon you and that they understand. I am still struggling to learn to cope with my isssues. It is a hard road we are on, so don't add to it. I remember your post from when you were working. I wish you the best of luck. Remember your family loves you. Maybe you can't do some things the way you used to, but you might find that with adjustment you can still do things. I think the term paradigm shift is appropriate to what I have had to do mentally to cope with my new life.

  • :S Good Morning!!!! How do I make it with this new normal? One day at a time! I was very active in life, had a great job as a legal assistant and enjoying life. My life changed on the operating table in March of this year. (good thing I was asleep, I might have yelled NO NO NO! LOL)I became a multi-level fused, caged, donor boned, and platted individual. I have limited mobility, 10% to R and about 30% to the left. I hurt daily, I can't do a lot of things I used. I can't ever pick up over 10 pounds and have applied for ssd. I take my medications like you do as well...pretty sure that is forever. I miss my old life, but determined to have a great new life. On days, I feel like walking a distance or washing the dishes, I say wtg!!! On days I don't feel like it, I say, ok...it is ok to rest, it is ok to love yourself and take care of yourself. Give yourself permission to be the NEW you. Certainly you grieve over the loss, that is normal. I often cried because "I wanted", "I wish I had this or that back". For me personally, it was accepting things as they were, learning to love the new me, praying, and a lot of humor in the midst of the storm.
  • Hi Humble;

    If you can, and especially if you think you need to, go and get a referral to someone who can help you.
    It's hard accepting that you'll never have your old life back, or that you can't do the things that you used to be able to do. My hubby has always claimed I have OCD, as I was always cleaning the house. Do you know how hard it is for me to see the dust bunnies on the floors now? LOL, I realized that yes, I probably to have OCD a little. Even with our 2 dogs, 2 cats, and multiple dust bunnies running around, I've somehow been able to let it go when I'm not able to sweep the floors. The extra pain is just not worth it some days. I guess I've learned that if I don't do the floors one day, then I can do something else, no matter how small it is. Kind of like a compromise. Actually, like today, we're going out to dinner to celebrate my sister-in-law's birthday, so I'm sitting here watching the dust bunnies race around the floors. I know if I sweep or vacuum, it will make sitting at the restaurant that much more miserable, so I'm leaving it for tomorrow. As I'm typing, I'm realizing that what I'm trying to say is you have to learn how to prioritize what you want or need to do differently than before. Do what's most important to you first, and the rest can wait for tomorrow. Do one thing at a time, even if it's only one thing a day, your family will appreciate any quality time, if you're not in extra pain from trying to do more than you can in a day. My nieces play soccer and hockey. There's no way that I can sit for the entire games, but they do appreciate when I come, even if just for a few minutes. If this is the best life that I can live, than I'm going to live it as best as I can, even if it's only for a few minutes or an hour or a day at a time. I try hard to deal with my pain, and not dwell on it. I try hard to focus on the positivity in my life, not the negativity (which is very hard, but it does help). If my body is telling me I'm pushing it too hard, then I stop and take a break and get back to it after.

    I used to be a runner, can barely walk now, and I miss my runs so much. So now, I use that to meditate with, picturing myself running down a road, sometimes it's down a country road in the autumn, surrounded by trees and all the pretty colours. Sometimes it's winter, with the crisp air and the sound of snow crunching under my feet. Sometimes it's a cool spring morning, with the scent of blooming flowers in the air. Never summer though, as I would just be a big ball of sweat, lol. Doing this for a few minutes, my breathing changes, my heart rate changes, and somehow, my muscles and mind are more relaxed after, then I can get back to whatever I was doing. That's something I learned from seeing a psychologist, but there are so many other things they can teach you as well, so if you can, I highly recommend seeing someone.
    APROUD CANADIANveteranButNOTa doctor, my thoughts are my own
  • Hello HP,
    I have had CP for 20 years, we should not feel guilty for the condition that we endure, we did nothing to warrant this existence and do feel an obligation to all those who help and support us, giving up part of themselves to cater to our needs.

    We all feel despondent at times and when you reflect on what you have this will keep you going, we may all think things cannot get worse and we always find the additional strength to go on, with the trials and tribulation of this painful life.

    We all have self-doubt than those imposed changes will divide us and in reality over time it just makes us stronger and more united, pain is a team event. In acknowledging your family need does give priority to them and shows that resilience that even in your hour of need you are thinking of others, you can do no more.

    We all have to find a purpose and future goal and inside you are still the same person that you wife loves, we are obliged to keep that visible and be the person and example that others follow or look to us for guidance support and encouragement.

    You go on because the alternative is to give up and nobody should do that knowingly to themselves, we all need help and to use that inner strength to find those who can help and support our needs. The financial impact is not always addresses and is part of the coping process, my own family work harder on the basis of my condition; we help and encourage each other.

    Commodities are only things, family is the most important the relationships and love for each other, how we care and what we say. We all have low times and wonderful life example, we are all here and have vast experience knowledge and understanding of all these events, many here are living with them also, the same apprehension and fears, trepidation or imposed changes. Kinship should and will make us stronger, sharing our ideas and supporting each other.

    Use than stubbornness to pace well, support your family as you are doing and acknowledge the needs they have.

    How is your pain level and how best can you help yourself?

    Take care and good luck.

  • I've asked this how I go on? I haven't had surgery though I think sometimes I should have and maybe one day I may have to but I want you to see your wife strong and she wants you and loves you no matter what. Back in the world wars women were called to do the work of men since all the men were at war. How did they do it? Because they have strength to do it! Of course I'm talking before the rights of women as many are overseas now fighting for us just saying-

    It's a fantasy that women want rich men and maybe some get it but it's not what makes women love and stay with you. Your wife chose to work now and I hope she wants you to get better and go on for the kids. Yes talk to someone I had to talk to a online counselor I have through my benefits at work EAP if you have that or your insurance can pay for it. You are not less than a person with a disability and have a right to a happy day in what you can do and focus on that and I hope your pain gets more under control and hope your Dr. helps you with that. We never know what's around the corner in advancements in spine research. Just for one more minute hold on and pray you will start to feel better and live for the moment because we don't know how long we have here. I haven't really read the posts above yet but live for today just each day and hope you get professional counseling that you are asking for. We're here for you. Charry
    DDD of lumbar spine with sciatica to left hip,leg and foot. L4-L5 posterior disc bulge with prominent facets, L5-S1 prominent facets with a posterior osteocartilaginous bar. Mild bilateral foraminal narrowing c-spine c4-c7 RN
  • Thanks for all the encouragement and advice. I will try to keep my head up and stay positive. My wife and I worked very hard to allow her to be a stay at home mom and it was wonderful for the past 12 years. I just really get down when I can't keep up on the house work or play with my kids the way i used to. We also worked hard to get out of debt and now were buried in medical bills. I just need to find ways to be more of a contributor. My family does seem to be taking things pretty well. I think im the one who really needs to learn to cope better. Thanks for all the support. It definitely helps. It seems to be a very difficult condition for people to understand.
  • O:) I would say keep your head up, but it is kind of hard to do that w/a fused neck. OK, so look forward, that is not headlights that is Hope and Good Wishes coming your way. On days you don't feel like getting out of your recliner, play like it is a space ship and let the kids sit in your lap. If the kids are too old and teenagers, then you play like its a spaceship and launch from the area! :) Learn to be the new you, it is painful a lot of times, it can be yucky, but it doesn't have to keep you down...in our situation it is too hard to get up, so dn't get down on yourself too often.
  • I think you answered your own question. Find little things that you can do to be an active participant in the life of your family. Help the kids with homework by sitting with them or having them sit by you in the living room. Watch TV or movies together at night. If you can do some things pick those that are most visible like cleaning the kitchen counter after everyone leaves in the morning.

    If you can't get to them then have them come to you. But don't isolate yourself.
  • I like Kris' response!! Your family loves you, and understands, so I imagine they appreciate everything you are able to do!
    APROUD CANADIANveteranButNOTa doctor, my thoughts are my own
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