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I've had it

meydey321mmeydey321 Posts: 2,435
edited 06/11/2012 - 8:29 AM in Chronic Pain
I don't know how much I can stand anymore. I'm sick and tired of this pain which keeps me pretty much homebound and I have no life. All day long I get to stare at the 4 walls laying in bed with a freaking ice pack. This is not life. My kids can't do anything fun because I can't take them out to the movies, mall, shopping etc. and their dad is at work. You don't know how guilty I feel. Last night I had a mini breakdown but thankfully I put myself back together again. I want to go out and not be trapped at home because of this f^&*ing pain. Yes, I'm throwing a pity party and I'm the guest of honor who doesn't care any longer. What's the point? I've tried to be positive, uplifting, keep a sense of humor, and optimistic but it'd not getting me anywhere. Who am I kidding? Maybe it's a punishment, who knows? Anyway, I want to get this off my chest and go on with my exciting routine of laying in bed with my beloved ice pack.


  • I'm in bed with my heating pad so you are not alone today! I'm in bed, flat on my back a lot too! I have spent the majority of my time having to lay down, rest, or pay for anything I did for the past 3 years! Since my fusion I have felt better and I am improving! However, the orders are to walk, walk, lay down, rest with very limited sitting...what can I do when I'm not walking and can't sit? I lay down!! Such is my life and here I am! I know how you feel. It is so frustrating, isn't it? I'm glad you had your pity party and I hope you feel better now that we have joined you!

    How old are your kids?

    What does the Dr. say he can do for you? When did you have your fusion?

    Do you try to have a daily routine even when you are in bed? I kind of keep a routine with fav shows to break the day, music, reading, checking out SH and whatever I can to entertain myself while I'm home alone, in bed all day. My girlfriend bought me a sound machine so I can listen to the sound of the ocean, open the blinds to let the sunshine in and it feels like I'm at the beach...well, I can dream, can't I? LOL! I hope I made you smile with that!

    Take care and feel better!

  • dilaurodilauro ConnecticutPosts: 9,856
    to deal with. The pain, sure, you know its there, how can you not. You hopefully just are looking for ways to decrease that pain. Many post-op patients run into different problems and those always need to get addressed. Hopefully, by conservative methods and not another surgery.
    Its the impacts the pain and lack of mobility and function have on the rest of your family. Its one thing if you were alone and your pain and such didnt impact anyone.
    For most, like yourself the family is impacted. But you know what, you would be totally amazed just at how well the family understands. Even small children have a sense of whats going on and they see Mommy or Daddy NOT be able to do certain things. They almost look at that is being normal and dont miss out on a thing.
    Its you, the patient that suffers the most with this. The countless guilt trips and more. You feel you are not a total and complete parent if you cant be involved like so many of the other children's parents.
    Remember, children adjust a lot easier than adults.
    Time will tell,
    Meanwhile, find the ways that can get you up and around a bit, I dont think I've ever met or heard about a spinal patient that there is nothing that can be done. There is always something, sometimes its a lot harder to figure out what that is, but its there
    Ron DiLauro Spine-Health System Administrator
    I am not a medical professional. I comment on personal experiences
    You can email me at: rdilauro@veritashealth.com
  • Katt, my doctors said that I'll always have pain but they'll do what they can to make life better for me. The scar tissue that I have will keep growing back but I hope to be able to have control over this and lessen the pain. My doctors have in mind to try epidural injection, breaking up the fibrosis, installing a morphine pump, or possibly performing a surgery just to remove scar tissue. I already had an ESI last week which has gone bust because I feel worse than I did prior to it and I've passed the 5 day mark. I can't do much at all because simply walking causes electric cutting pain down my legs. 3 years and 2 back surgeries later I still can't sit comfortably because of my lower back pain and permanent nerve damage.

    Kathy, my kids are 12 and 15 and they have helped so much. I know life at home is different than some of their friends cuz they have had to grow up a little more faster and take on some things I'd gave up (ex: vacuuming) but children do adapt and I think this self reliance will help them once they are young adults. They already know how to do laundery, cook simple meals, etc. As far as my fusion, I had it done in June 2008 but unfortunately I didn't achieve a resolution of my pain. I try to keep a schedule when I feel more decent; I have a dog whom I enjoy caring for, I get up early and see my family off to work/school, watch the latest lunacy on the news, SH surfing, do some light chores and rest in between tasks, talk to kids about their school day and help with homework, and get some dinner going. This is my usual daily routine, give or take but lately it has ground to a stop because of my current pain level.
  • I believe that something can always be done for back problems with all the technology available in these times. New procedures will always be in the horizon that may hopefully make the difference for all of us. However it means that someone has to be the guinea pig ;)

    So true what you said about children being resilient. We always want to make sure our kids have a full and happy carefree life and that all their needs are taken care of. My biggest guilt trip is that they are missing out on going to places where I'd have a difficult time being at like amusement parks, picnics at the lake, or school functions.

    I know they understand but I wish in my heart that I could participate. Things have to improve, I refuse to have pain dictate my life but I need help cuz I can't do it myself.
  • Sending hugs and prayers your way. I wish U would feel better. GOSH u are way to young to be going or facing all of those suggestions that the doctors are sayin. IT sucks that the last thing u did let u down.... KEEP your chin up and Keep trying. I am sorry u are suffering so.
    I just wanted u to know u are NOT alone Ok? Try to get out today and sit on the porch. Maybe some small things will help.
    Hugs hun... Monica
  • I know that pain and it can be tolerable to excruciating. I've been there and understand. Hopefully, they will discover a way to address the scar tissue issue for you. If they could do surgery and somehow do something to keep it from growing back so quickly? I worry because my body tends to create excessive scar tissue. You have that L4/5/s1 thing going on and those nerves are so painful with the groin/legs too! I had my 1st surgery 3 years ago too and then the fusion 10/16/08 so I have the same time frame as you. I think my fusion is more successful than yours so far but who knows when/if those old nerves will really heal or the scar tissue will set in? Right now I can walk better so I'm thankful and I hope someday they can find something that works so you can walk some too! Funny, how we are happy for any quality of life after having so little, every little bit helps! I hope one of their tricks will work for you before long!

    Sounds like you have good kids! I'm glad your kids are older so you can enjoy them different ways. I think it would be harder if they were younger. You can play cards or other games in bed with them or watch movies together. I miss those days with my boys. My baby had his 19th BD this week! He lives at home but is busy with classes at college, work, and social life! I enjoy when he is home between classes and work, dinner or when he comes in around 11pm he will sit by the bed and talk to me awhile. My oldest son is in the Navy and I miss him everyday! Enjoy them now because you know they grow up too fast! Both of my boys can clean, cook, laundry and I agree with you that they are much better off for it. Also, our pain helps have more empathy, etc. for others around them.

    Speaking of dinner....I better get up and start it! I tease I'm like Rachel Ray cooking up something good with as little work and time as possible!
  • Thank you Monica for your kindness; we all can use reminders about not being alone in this thing. I remember your post and you have so much to deal with and it's so reassuring that you're here today encouraging others when you have big problems of your own.

    Hey Kathy, I hope there is something to slow down the scar tissue; it creates a lot of pain when it is impinging on the nerve roots or wrapping around the nerve itself. Whatever the case I know that my doctors do what they can. I hope your son in the Navy is safe and sound and I appreciate the sacrifices he is making; it is nice to hear about your 19 year old working and going to school and still checking in on you every night when he comes home. I remember those days of going to college and working nights at the library or sitting through night classes- I sure miss those days. It was like the world was there for the taking during our young adulthood and we could be whatever we wanted to be.

    So, what's for dinner tonight Kathy? =P~
  • the last few days have been awful for me too {i am not much better normally!} but for the last 72 hours i have been curled up on my recliner with my TENS machine throbbing away on my back .i feel i could have written your post! indoors all the time no life etc..i know its no comfort but you are not on you own ! take care
  • You're right, everybody could write about this experience and we all relate to being cooped up in the house. I think I'm going stir crazy from cabin fever. Anyway, it is a comfort having friends who relate and that care about you. I'm glad your wife is supportive and always there for you. I certainly understand that chronic pain is hard on us and our caretakers, and I never fail to tell my husband how much I love and appreciate him (and the kids too).

    I'm sorry you've been curled up on the recliner for days. I have a tens unit but sometimes it sparks up more pain when I put it on my lower back on each side of the incision line. The pain will zap down to my foot and it don't feel too good, but I still use it when I can.
  • I baked chicken breast, then topped with provolone cheese and sauteed mushrooms, rice and steamed green beans...by the way, I love those veggies you can micro in the bag, cost more but with a coupon and convenience it is worth it!

    And I got my walk in while the chicken was cooking, yea!
    Now I can rest again.
  • I understand exactly what you are saying as I am in the same boat. It sucks being here all the time. I try to get out but the pain brings me home always. On top of this my wife just filed for divorce. No doubt she has found someone else again. She cheated on me once & I forgave her & she has been acting strange again. I hope you start feeling better & can get out & do more. It does help me to get out of the house even if its just for a minute. God bless,

  • meydey, I understand what you are going through. Although I don't have kids, not being able to work has really made me feel useless. I'm so lucky to have a loving and understanding wife.

    I decided to set small goals each day to make myself feel better. Things like taking a shower, shaving, doing laundry, etc. These may seem like small things to others but they help me. I sometimes wonder "Why get out of bed?" but I feel better if I at least attempt a few things each day. I even make dinner for my wife and pack her a lunch each day (I haven't made her sick yet! :)))). There are times when I have to stop because of the pain but that's ok by me. At least I'm trying. I get cabin fever all the time and understand exactly what you're talking about.

    I hope things get better for you soon!

  • Uhhhm, yummy :) that sounds like a gourmet dinner Kathy. I love those steam bag vegies too. I'm all about convenience nowadays.

    Hi Jeff, that is so nice for you to pack lunch for your wife every day. My hubbie is happy just for having coffee going in the morning. I know what you mean about doing little things that make you feel better. Believe me, sometimes taking a shower is a chore. When you hurt so bad you don't wanna get out of bed for nothing. I do feel better about myself when I do light chores. It's not a big deal for regular folks, but it sure means a lot to us spineys.

    Hi Norm, how are you feeling today? I am glad to see you're writing posts and keeping in touch with us during these difficult days. Hang in there
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