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isolated

I'm new to this forum. I see that people sometimes comment that they are long past needing sympathy from others. I feel like that as well. However,lately I wish I had some empathy. Maybe it's that piece of someone in chronic pain to want people to know how you feel. It's not tangible, they cannot see your pain. Many people doubt it. I was in a servere accident almost 7 yrs ago. I fell from a tree stand,thanks to some bees, and fractured my spine, as well as other less severe injuries. I had a spinal fusionS10-L1. At first everyone rallied around me. Their goal was to help me get «better». When that never happened, people either smothered me as though I was sick or stopped talking to me all together. I had a 2nd spinal fusion L4-S1. After this surgery, I couldn't work, the pain was chronic and I needed morphine daily, any little thing caused a flare up. I always say my accident is the gift that keeps on giving. Surgeries, injections, Drs visits, MRIs. I had to ask some people not to visit me every single week, as if I'm ill. I wanted to be seen as me again, not the girl with back problems. The past yr the pain has progressed. My pain is worse, activity was low. I tried every pt, drug, exercise. The winter bums you out too. Lately I just feel isolated. When people say...how are you...they don't want to hear...well I didn't sleep at all, I can barely move today. They want you to say I'm fine. When I have an injection...they ask me each day...are you better?...did it work? That's the few people who even ask about it anymore. So I'm reaching out to others. You 'll understand and empathize. You have good days and bad days. I think things have gotten harder over the years. How do you do it? Most of the time I get up each day ad put one foot in front of another. I used to be so optimistic. I'm not sad...I'm just blah.
Fall in 2007- broken spine. Spinal fusion T10-L1. 2nd fusion L4-S1.failed back syndrome
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134

Comments

  • Hang in there, I know it seems easier said then done. There are days i just lie in bed all day from the depression that follows the pain. It would be so much easier if our bodies turned a color if we are in pain, so people can see the pain. Its very hard for them to understand that one day the pain is bearable and the next day you can barely move.
  • sandisandi Posts: 6,269
    edited 04/17/2014 - 5:46 AM
    Almost allof us have either been there, or will be there in just feeling isolated and frustrated by the lack of empathy and understanding. The reality of living with a chronic condition is that while most people think that they understand what spine pain feels like, their experiences are limited to what they, themselves have experienced.....most of the population have pulled a muscle in their backs or strained their backs at one time or another, but for them to grasp the scope of what we live with each day is difficult without a reference to guide them.
    On the flip side of that, no one wants to listen to us complain , when we are asked . It is frustrating for those who love and care for us when we don't get "better" or back to how we were prior to surgery, and at times they feel helpless to "do" anything to help us get "better."
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  • To your post a lot. I never know what to say when people ask how are you, or better yet, what have you been doing. One day I might actually answer honestly: I'm not up to anything. I had to quit my job, and now I just sit at home, day after day. The pain is so bad sometimes I want to die. No, the doctors don't know anything. No other treatment options left. Then I might ask how they are doing.
    I need to have something to do, some sort of hope. Maybe that would help you. People in our lives want us to get better so bad, so seeing us in pain, or talking about it honestly is hard. You can talk honestly here, I've finally found people that 'get' it. And they care, but don't get hurt by talking honestly.
    2000- spinal fusion, complete spine due to scoliosis
    2012- pain began, started treatment for chronic pain
    2013- install of pain pump, procedures to address complications
    2014-blood patch, spinal fluid leak
  • when someone ask how i am i make a joke of it. i say like a baby treats a diaper then i laugh and walk away. i dont talk about it or complain at home or work. like i said if someone ask i will make light of it and turn it into a joke. hopefully the get the joke but a lot of people have basically little or no sense of humor. people who cant laugh at life or things i tend not to hang around. all of my friends have a sense of humor and we laugh a lot. my favorite things to do with the wife is to go to comedy shows. we even drove 300 miles to see a show in reno last year. a gift for the ole' ball and chains birthday. we had a great time and laughed all night i try not to crack up during love making because that might be too far with the ole humor
    jon
    I have 4 fusions from L5-3, the latest last May '12 where they fixed my disc that broke.They went through my side this time. I take 40 mg of oxycontin 4x a day and 4 fenatyl lollipops 300 micro gms 4x a day.
  • All of the kind words. I haven't been feeling well and it makes me cranky. So I feel like I'm more sensitive. It helps me so much to know that other people can relate. Since my last fusion I couldn't return to work either, after 3 yrs of this day after day I feel myself sliding over to the unhappy side. I'm generally glass half full girl. So many people lean on me all of the time, and I want to be there for them but at the end of the day, who is there for me? My husband is wonderful but he works long hours, and does almost everything around the house. I share with him most of the time but like we all said- he just doesn't understand. And when he's tired or having a bad day I keep my issues inside. And because of that, I've pulled away from people too. Family is almost worse. They all try and fix me or tell me how they know someone who is worse off, so buck up. So I asked my doctors, physical therapists for suggestions of support groups. I was so surprised at the lack of resources in my area. Of course they have a seminar I can pay for. That is how I found myself looking online. I'm trying to find happy(ish) positive (ish) me again.
    Fall in 2007- broken spine. Spinal fusion T10-L1. 2nd fusion L4-S1.failed back syndrome
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  • Just a suggestion but what about thinking about starting a CP support group of your own? Most hospitals allow them to meet in a room a couple of times a month, at no charge, and they list them in local papers and hospital newsletters. If you are feeling the need for some real life support, I am sure that there are others who are as well.
    Plus the added benefit is that it might help you to have something you can feel good about that belongs to you.......
  • That is a great idea. I have a lot on my plate right now. ( other than just my health- like it's not enough lol) But I'm definitely going to explore this idea.
    Fall in 2007- broken spine. Spinal fusion T10-L1. 2nd fusion L4-S1.failed back syndrome
  • have put a comment on your post ..we all feel like you do at some or all the time .you are correct that pain is invisible and some may even doubt your pain .I can totally understand the isolation too ..all of my so called friends have disappeared .I have been through a divorce [mainly due to my ill health] .I am 17 years in pain and I have had 3 operations the worst was the ALIF fusion 2 years ago .my life has been hell since then and it was not much better from the second operation back in 2007 .day after day its the same old thing pain and isolation .there are some fantastic kind people on here and between us we have hundreds of years experience of intractable pain .dealing with it ..it very difficult ..well healthy people don't want to be around ill people .I won't patronise you .all I can say is I hope to day is better than yesterday !! .just try to stay strong ,,I know its very difficult .especially when you look ;;normal ..to others but inside you're screaming in pain
    tony{UK}
    1997 laminectomy
    2007 repeat laminectomy and discectomy L4/L5
    2011 ALIF {L4/L5/S1}
    2012 ? bowel problems .still under investigation
    2014 bladder operation may 19th 2014
  • After not being able to work for over a year, and dealing with seemingly never ending, unpredictable chronic pain, I am struggling......yesterday was my lowest point ever, and here are two quotes from my husband (who is usually the most supportive):
    1. How do you run out of time (doing errands), it's not like you work.
    2. You're not the only one suffering. Me and the kids suffer right along with you.
    My friends have basically abandoned me, except for on Facebook.
    I hope you have a good day, I'm going to try....
    April 2011 C1-C2 Fusion (Brooks wiring)
    January 2012 C1-C2 Revision Fusion (Harms Technique)
    2010 - current: Trigger Point Injections, Epidural Injections, Bilateral C2-C3 Radiofrequency Ablations
  • Wonderful to have found some people that I can relate to and be there for as well. This winter was my lowest time. I'm sure the weather didn't help. ( I live in Wisconsin) And we were building a house. Fighting for social security disability. And I was in the most pain I've ever been in. I have a loving, supportive family but I was drowning. I would even cry at the doctor's office. Slowly I'm pulling out of the darkness. I read a book about being present, enjoying every blessing in life. I just wish I could work, or find something that I loved to do again. I used to be an avid runner, any kind of exercise really. I also loved to garden. I can do each of those things in a much much smaller way, sometimes. It's funny what you said achyneck, about running attends. My husband says...how can you be so busy if you don't work? Well...when you lay down after every little thing, and everything takes you 10x longer, you are busy. I'm sorry about your friends. Both you and Tony. It hurts, I know. Especially when you do talk to them and they talk about all of the fun things that you would love to do, if you could. You always wish that they would understand how lonely you are. How you are still you inside. Sorry this place makes me want to spill my guts :) I wish you all a good day too.
    Fall in 2007- broken spine. Spinal fusion T10-L1. 2nd fusion L4-S1.failed back syndrome
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