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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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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.
  • 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
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  • 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
  • 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
  • The user and all related content has been deleted.
    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
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  • 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
  • Spill your guts on here- it's what it is for. I do it all the time :) Something I haven't said on here before that is I feel jealous of my friends. I hate the fact that they can go out, do whatever, and not even think about it. I hate that they can bend down without a second thought, sit in any chair, and that they can go for car rides or drive as long and far as they want. I'm not angry with any of my friends, but I am jealous. I have tried to turn this around on myself (I didn't recognize that I was lucky when I could do these things, why would they?) but sometimes I still have jealous thoughts. And that's okay- I am going to have negative thoughts, so will you. I try to also think of who would be jealous of me- for example, what do I have that others would be jealous of me for? What do I have that I'm not recognizing?
    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
  • jlrfryejjlrfrye ohioPosts: 1,109
    I felt something had to give , something to give me some sort of unconventional love who didnt care about my back or neck, This might seem strange but I became a dog rescuer. Not all dogs just small senior that would rather spend the day with you cuddling. These dogs have brought so much joy to my life. I even ended up adopted my first foster when his adoption didnt work out. It is strange he knows when my days are very bad and will do his best to comfort me.If there is one thing I can always count on is him.
    Susan
  • The old ball and chain may hit you upside the head if you laugh during lovemaking.

    I am also surprised about the lack of support groups especially with all the pain patients we see when we go in for nerve blocks or just to see the doctor. I may look into starting a group in Memphis if i can find the time.
    laminectomy c4/c5 2008, ACDF c4-c7 Jan 20 2014, pseudo arthrosis suspected 2017, diagnosed  2019.  Revision C6/C7 pending. Multiple ruptured discs lumbar, l2-s1.
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