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isolated

13

Comments

  • I know how you feel I have lost everything due to a surgeon making a huge mistake and crushed myC5&c4vertebrae
    I have lost my job, my identity, my house, my husband had an affair and took off with a 22year old,My dog who I loved like a child passed away recently and nearly all of my friends have stopped contacting me after years of not being able to do much due to the pain and being completely burnt out due to adrenal failure.
    I also stopped socializing due to the pain embarrassment of not having a job so I feel worthless

    I honestly wish I was dead but I know I probably wouldn't succeed and I would either end up a vegetable or in a mental institution
    If I was an animal I would be put down
    There needs to be more support groups for people struggling in pain. These isn't one in South Australia to my knowledge.
  • I find myself frustrated with my current condition, like many others, having had my last surgery in Feb 2013, I am now over a year into my recovery from L4/S1 revision fusion, and still unable to get back to "normal". I find myself being able to get through 5/6 hours of activity suitably medicated, but then have to rest up for several hours and endure the pain that comes from my nerves through my right leg and into my foot. Like others have stated, people expect you to be back to normal as they see you able to walk around etc, but don't understand that there are things which you can do that don't cause pain,and others, even like sitting down, that make life very difficult.

    I struggle because while I am able to actually walk around, even playing golf, for 5 hours with my pain levels on a low 2/3, after that I have to lay down and that likely means for the rest of the day with the exception of getting up and walking around every so often, or taking the dog out for a walk. However, what I really struggle with is going out and socialising in the evening, because not only is it very painful to be sitting in chairs that you can't seem to get comfortable in, it's also frustrating because you get isolated by others who soon ignore your situation and get on with their socialising regardless of the pain you may be in, my wife included. I feel like I'm in a no win situation, if I go I am miserable and in pain, if I don't go it gives the impression I don't want to join in. I've tried dumbing down my pain by having a few alcoholic beverages, but that is probably not the best solution as I have never been a big drinker and it tends to make me quite Ill, which means that evening of less pain is then followed by 1 or 2 days of sickness which makes my back / nerve pain even worse.

    I feel like I am being frowned upon by my wife and family because I struggle to get back to full time work, managing 3 or 4 days of 5/6 hours only, they don't understand that the commute and hours sitting at my desk is difficult, but yet I can manage to walk the golf course (sorry I keep harping on about playing golf but it's one of the only things I find enjoyment in that also provided me with a good few hours of exercise) or take the dog for lengthy walks. I also try to take care of some things around the house, such as the family's washing and some cleaning, but as I am sure you all can appreciate, even some of the simple things like filling the washing machine can be painful. They also forget that in addition to my spine issues, I also have to contend with the effects of a mini stroke prior to my surgery, but was only diagnosed several months after. It means I have little to no vision to my lower right side, and also has given me cognitive issues with things such as memory / concentration problems. This adds to both my home and work issues, and even in isolation I wonder how I might have coped,never without my soigné issues.

    Sorry, rant over, the upshot is that I too feel very isolated, some times more than others, but as I think I recall from others posts, without the easy visual clues of our disabilities, it makes it very difficult for others to pick up on and understand / make adjustment for, even those closest to us!
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  • It's easy to say hang in there , things will get better. I really don't know what to say to ease your mind. To suffer with chronic pain an d then to lose the one you love must be cataclysmic. If I lost my wife I cannot imagine how I could cope. Apart from the practical things she does for me every day, the love and encouragement helps tremendously. I am sure that many of us on this site are thinking of you and wishing you well.
    John
  • It's so hard. I wish I could say something eloquent & meaningful..to be honest I wish I could snap my fingers & take this bloody curse away from all of us! I worked really hard to build a social life for us. I knew coming out to America would be very lonely so I forced myself out to meet people. I'm very shy but I made some great friends. We got together at the weekend as families & the Mum's hung out during the week. As my pain increased & the things I can actually do shrank they drifted away. I tried explaining things.. Not in a burst into tears & tell the truth kind of way. I gave the facts in a perky..see I can still be fun, upbeat way but it didn't really help. I still get invited to things but they're things I can't possibly do, or things I could just about handle but I wouldn't be able to move for days if I did & I have to be able to get up & take care of my kids everyday because my husband can't take time off work & I don't have anyone else! Deep breath!

    Yes! It sucks. Things would be so much easier if I just stopped existing but that's not the option is it? My only brother took his life leaving his 4 kids, my dear parents & me to live with the emotional carnage that remains. We carry on because it's what we have to do. We squirm & wriggle, catching our breath when we have to sit. We feel guilty & useless & rest with our 'rescue blend' of creams & heat whenever we can. We slap on a happy perky face because crying 24/7 gets old really fast. Then one day something strange happened for me... I laughed out loud! It caught me by surprise at first, then I realized I missed that feeling. As the days passed I laughed more & more. I don't know if I'd been faking it for so long that it became real or the changes I'd made in my life were starting to work. Maybe the 'Beast' got bored & went off to torture someone else or it could be the much discussed 'Acceptance' thing.. I don't know.

    Some days I still go into that dark place. To be honest I've been laying here since 4.30am crying in agony. "Oh poor me"
    started around 4.45am, I can't live like this" hit at 5am & "I want to die" was in full force by 5.15am. Since 6am I've been on here & to be honest I had another cry at some of the posts but I'm ok now. As I said, "it's so hard!" but take a look around.. There's a huge full world & ok, I can't climb Everest (not that I'd want to) I find it hard to climb the stairs most days but I can still do a hell of a lot. I took the things I mourned that I couldn't manage anymore, like art & I found a way of doing it 'art Journaling' that's so much easier on my back. Most importantly, I looked at my kids faces & knew they deserved more.

    When I practiced being present in my life & totally enjoyed the things I could, I found it easier to push the pain out of view. Of course it's still there, it screams at me at some point everyday, all-day sometimes but my pain isn't the complete focus of my life anymore.

    Sorry I've written a novel. It's been a long night!

    It's so hard but it does get better. Very few can keep 'The Beasts' attention 24/7 forever. If anyone's having trouble with deep depression that just won't quit, get help. You'll be wondering why you didn't before now...
    Osteoarthritis & DDD.
  • Jlrfrye. Death takes an unimaginable toll on a family. It's natural to find 'anger' to place all of those emotions somewhere tangible. Your sister may be being completely cruel & unreasonable, I've lived that in my family. You are wasting precious years with each other. Am I effected by my life's experiences? Yes!

    My husband experienced sciatica too.. Best thing that ever happened for my marriage! We're all getting older & more of our loved ones are walking a mile in our shoes!
    Osteoarthritis & DDD.
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  • backache99backache99 Posts: 1,313
    edited 04/27/2014 - 2:38 AM
    a very long thread called something like[[[[[ where am I I now and how did I get here .things were so different before]]]]]] by a nice guy called bob{in the forest ] .. if you can find it ..its very long and worth{just enter where am I now and how did I get here in the search box and you will find it } a read ,.he had a massive spinal operation [he sent me his MRIs } he needed surgery BIG time .I have not heard from him for ages he lives in sacramento .I used to Skype him but he has disappeared off radar ...the problem with long term illness especially backs is to the untrained eye we look .;;normal;; and as no one can see our pain .some even doubt we are in pain .this adds insult to injury .acceptance is very hard when you young and have your life in front of you .,,,I never thought that I would end up as I have ..I always looked after myself when I was younger ,in my teens and 20s I was a keep fit person I enjoyed bike riding I ran and swam I did not drink or smoke and I was the right weight I was very health I am a lifelong vegetarian and I still don't drink but due to boardham I smoke .and I am overweight .I can't do anything without pain taking over ..its very cruel
    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
  • I've posted this quote before,

    “...occasionally I wished I could walk through a picture window and have the sharp, broken shards slash me to ribbons so I would finally look like I felt.” 
    ― Elizabeth Wurtzel

    Human beings are social animals. We need to connect even more so when we reach a point that we're no longer contributing in the usual ways. I used to walk around with bright red hair thinking 'I don't care what people think!' but deep down we all do!
    Osteoarthritis & DDD.
  • I'm holding (I'D Claire) is my grandson. And I can only hold him if my back is not in a mood that day & if someone hands him to me or he climbs up on a tall chair. He's light as a feather but like many of you I can't lift things from the ground. So I don't have to take care of him. And God I wish I could. Something else I was robbed of. There is no worse pain to my heart than when he is crying and pulls on my legs so I will lift him. Although it's funny how your family adjusts because someone usually scoops him up so he can get a hug from Nana. As much as things/ people/ circumstances bother me, my family and how close we are is a gift through all of this. My back problems stem from an accident. I fell in front of my husband. He heard my spine break. So I believe that has bonded us. My children just step in and can almost tell when I'm not 100%. They bend over and get things for you. Carry things. Help you walk when it's icy. I rarely ask for help. Susabell my heart goes out to you. I'm so sorry for your loss. Isn't losing who we used to be a huge enough loss? Sometimes I wonder why life piles it on. Don't you what to scream....haven't I been through enough? ( are you from WI Susabell?) We lose ourselves, jobs,homes. Connections to so many people. It's hard not to envy others or become jealous. If I have learned one thing throughout all of this though, it's that words hurt.
    Fall in 2007- broken spine. Spinal fusion T10-L1. 2nd fusion L4-S1.failed back syndrome
  • My heart goes out to you for the loneliness you are going through.
    As you can see so many hear share your feelings and so many here can help you and have such wonderful
    ideas to maybe improve our lives. I know I go here when I am so down and wish I could give as much
    as I get here. For me I can have a ton of people around me and still feel a deep sadness, for what is gone
    and their lack or not getting what I feel and need.
    So thank heavens we do have this place to cry and vent it all.
    It is a blessing that your Hubby stands at your side I would give a lot just for that.
    I hope and pray you start to feel better and wish I could change it for you and so many others.
    Sherri
  • flagged as offensive ..I was reading this thread and instead of hitting .1/2/3/4 I hit the flag as offensive !! sorry I have contacted the mods{liz] to put things right ..sorry again ..I can't remember which post if was otherwise I would have PM the person directly ....SORRY AGAIN TO ??
    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
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