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the loss of an old life

dawnieeddawniee Posts: 48
edited 06/11/2012 - 8:25 AM in Chronic Pain
Hi,
I am slowly coming to the realisation that my pain issues are ultimately going to have an immense effect on all aspects of my life. Each day so far since all this started is a race against pain and time. It is me saying blah blah my back hurts I am in pain. This situation appears to be making me very self centred. It's not intentional it's just it engulfs your entire existence.

It's just that I want to be well again. I don't want to be in this situation. I want to be at a point were I can go back to work. I want my life back! Is that too much to ask for?

As for work I am a scrub nurse in ortho theatres realisticaly I know my back will never tolerate the physicality that the job entails. This means something new but nobody is going to touch me with a ten foot barge pole at the moment. Will my current employer re-deploy me to lighter duties in turn will they downgrade me? Will 22 years continous service mean anything?

This in turn terrifies me as I am the major bread winner. I have sixty days full pay left then its half pay and I dont know how the bills are going to get paid. How are we going to keep a roof over our heads.

Pain wise it seems to be good and bad days. I get up and within ten minutes imeadiatley I am reminded of the pain. Its not always the level of pain it is the constancy of the pain. Its always there it rules my life. But this is so hard to explain to people.

Physio well that seems to be making the situation worse as for anything else well its a battle to convince the docs that my pain my sciatica the numbness ect ect are worth doing something about.

Its all about being passed from pillar to post. Yet in the meantime there is no resolution to anything. Meds wise its Lyrica, codiene paracetamol tramadol and voltarol suppositories. All of wich are limited in their effectiveness. Then there are the anti depressents that I am taking not a great big dose but I do wonder if this flags me up as hysterical in the minds of the docs? Who knows.....

On a more positive note my partner is amazingly supportive. She is a ray of sunshine the love of my life. But boy do I feel guilty. She is not getting the best of me everything we want to do is dependent on how good or bad a day I am having. yet she is so patient. But is does not stop me feeling bad about things. She didn't sign up to this. She got a positive happy determined individual 2 years ago. But now here I am a burden who at 38 feels like 110 on a bad day.

So what am I going to do? Got to get well get a new job pay the bills and learn to accept that life has changed and is going to change.

This post is more about getting it all down whats on my mind things I don't articualte out loud. Thanks for listening.

Dawniee
L4 bulge
L5/S1 disc herniation
Foraminal stenosis
left leg sciatica
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Comments

  • You have great experience and it was poignant for you to address the issue that you may not physically be able to do the job you loved and have been trained for and that is hard. It takes time to readjust if this is the right word and a loss of yourself and the person who you were and your identity.

    I lost my job in such circumstance and have retrained on the basis of what I can do rather than the unreality of what I would like to do, none of this is easy, you have many gifts to offer and for our sanity and future we are asked at time to be ruthlessly realistic in what we con do and the new mode in which we have to do it.

    Give yourself time and space to develop this concept, I understand entwined in all that hurt are you hopes and dreams and what you have worked those 22 years to attain, for me the higher up I went the harder the fall when it can and as you I have yet if ever to fully accept those imposed changes as accept then I must for this is my new reality.

    While in pain we are always in that flux of change that impart need to accept thing that we would not previously have accepted and continually find and keep to the optimum route for our pain and sanity a process for mind and body.

    With the best of intention we will never be the person we were and all those hopes and aspiration taken in a fleeting moment and this is our life now, we have to accept with a heavy heart what we need to do and what we think and expect of ourselves. We are still the same driven individuals inside imbued with limited capability and not functioning as we would like and many here understand that and live with the consequences.

    Even as our restricted selves we are entitled to some support and acknowledgement that this takes disproportionate effort to attain and goes unnoticed by many, just getting through every single day and night. Use the positive you to convince yourself that you will empower yourself as much as possible to do of you best every day, the good and the bad, applaud your achievements however small and plan like never before the realistic changes to get you where you need to be. If we can survive pain day and night nothing is out of reach.

    After a lengthy rest I returned to new employment and those who do not see the skills that you have, are not worthy of your continuing effort. Make those hopes and wishes reality, do something new every day and look for those windows of opportunity that come so infrequently.

    Take care and be kind to yourself and pace well.

    John
  • lost I am just lost lost and empty sad and broken broken hearted I don't know what I am going to do.....it seems so melodramatic on the outside I move well and no one can tell that the pain makes me want to curl up and not move.

    Thank you for your kind words I do know that eventually things will be ok I just need to get my fighting spirit back and get on with things and appreciate the good things in my life. I know by comparison my situation is not as severe as so many in this forum so again I should count my blessings.

    Well I am going to wipe my tears away and go and find something remotely useful to do!!!!
    Dawnie
  • I know how you feel, you all say it so eloquently. I have been living like this for nearly 20 years now. The old me was energetic, in good shape physically, a nurse, full of life, love of life, able to do many physical things that are now a distant memory.
    I have good days and bad. I have been seeing a new pain management doc for about 6 months. After my first visit, I really had a lot of hope. He has done alot to help me, changed meds, injections, radio frequency. I am now waiting, for a couple more procedures. Waiting for insurance approval which last time took 3 months.
    I have dreams on good days of hiking, snow shoeing, doing physical things that I enjoy and help to keep me in better shape in my middle years. Then the bad days, wishing I could just lay in bed all day on my heating pad and not move. Everything I do, everywhere I go, depends on how I feel physically. And being in pain for a period of time causes depression. I see a psychiatrist, I asked him, do I have a major depression, what is wrong with me. He says, no, my depression is a result of being in pain. I have no negative feelings about being on antidepressants.
    I had the foresight several years ago to go back to school ( I was a nurse ) and get a degree in computers. It has given me a job that I enjoy although I miss the relationships with patients and the old job. But at least now, I can sit, stand, whatever my body can tolerate. I can go to work at a later hour than working a predefined shift. So that at least gives me the ability to earn a living. ( and intermittent FMLA doesn't hurt either). But I miss the old me, although I can barely remember her.
    Most people do not understant what chronic pain feels like, does to the soul, etc. Nor do they want to. Nor do they really want to know how you are feeling when they ask how I am doing.
    This is a good place to come, to vent, among people that understand how I feel.
    I just finished a series of 7 steroid injections (actually 28 injections in all). Then the radio frequency. Now I am waiting again, for another insurance approval for sacroiliac joint neurolysis. I am hoping that it will not be another 3 months.
    Take care.
    OZ
  • Hiya, Welcome to Spine Health >:D< My heart goes out to you >:D< . I am so sorry that your having a rough time of things :? .I have problems in the L4/L5/S1 area, and had 2 discs removed and 1 shaved :''( I worked in Mental Health and had no choice but to give up my work :( , the work i loved to do so much :( . It was so difficult at first , finacially i mean :O . Going from a wage to living on £57 a week benefit :''( , it was no fun ~X( . I was so frustrated because i wanted to be working but physically i just couldnt :( . Like you i used to have good days and bad days, but now thats all changed i live in chronic pain every day :''( .Its been 2 years since i worked, and dont think i will work again :( . Part of dealing with the changes that this illness forces us to make, is acceptance :? .So what are your future treatments? Keep posting let us know how you get on >:D< . You are not alone in your struggle, we are here for you >:D< .


    Angie :H
  • I know how you feel, although I am well past the ability to work ever again. I really related to how you described your thoughts and struggle for acceptance.

    For me, I was doing well and thought I was really firm in acceptance of my "new" life, the one where I can't sit or stand for more than 20-30 minutes and must stay reclined all day long (because sitting or standing triggers my nerve pain something awful). But I was invited to a ladies bible study one night, and being new, was asked to fill out a questionnaire. On it, it asked what I liked to do for fun, what my hobbies were, and many questions like that. As I stared at it, I realized that all my answers no longer applied. I no longer have the ability to do any of my old hobbies, or do what I used to love doing. It was such a slam to my sensibilities and my eyes were filled with tears as I tried to hold it together. I was so embarrassed, because I really hadn't shared my situation with any of them and hadn't planned to. lol Fortunately, they all understood, but I had obviously been suppressing a good cry! lol

    It is a blessing to have a supportive partner and I'm glad you do have that. They also have to grieve with us, I believe.

    Our pain seems similar - I have had 3 surgeries on L5-S1 and now have 24/7 burning S1 nerve pain. It never stops. I am pursuing the spinal cord stimulator and will find out this week if I am a candidate. This gives me hope. Have you considered anything like that? Or are not you not that far in the process?

    Thanks for sharing!
  • I can't think of anything to add that hasn't already been said. I just wanted to let you know that I do know...I do understand....and I do care...

    Chin up, take care, and gentle hugs,
    Tanya
  • Your post made me cry. It was so very, very bittersweet.I understand the fear behind the pain and the grief for a life that has ended. I understand that you have a partner who you obviously adore and who loves you in kind. I, too, have a supportive husband but, like you, feel so bad I dumped this on him. I didn't do it on purpose. If I had any control I would wish it away but....but. Its okay to grieve. You don't have to "be strong" with those of us here because we all "get it". When my pain issues began, I grieved the loss of tennis. If only then I would have known that those were still the "good times"--meaning its gotten worse. The pain in my feet makes walking from point A to point B excruciating. Still, I have promised to teach wheelchair tennis in the spring. I'm doing it for me. I think it will help me to help others who are worse off than I am. Would you consider working in a Pain Management clinic? Boy, would I like to have you for my nurse. You would empathize and offer great emotional support. What do you think of our John? Isn't he the greatest? Dawniee, maybe you could help to organize "The Cause". They can send a man to the moon....blah, blah, blah, why can they not help our pain? esp. our neuropathic pain. Welcome to S-H. You sound like a wonderful person. I'm glad I'm getting to know you. I'm so sorry I had to meet you under these circumstances. PM me whenever you want to vent. Susan
  • People often forget that we have to grieve all those losses that we suffer when dealing with chronic pain; we go through the same cycles as we would if we'd lost a loved one....denial, anger, acceptance, then it all starts over again! I've had chronic pain issues for well over 20 years, and I'm still being "thrown for a loop" each time I have a major setback. Thankfully, I was a hospice volunteer back in my "normal" life, so do have some insight into what to expect. But that doesn't make it any easier at all.

    I think what has helped me survive all these years is the LITTLE things that make my life what it is now; my wonderful kids, my amazing husband, and every person along the way that I can help with even the smallest bit of advice or encouragement. When I had to leave my job this year (I've been off for three years now), I had worked for the same company for 25 years...a job I absolutely loved, despite the stress of it all. I missed the social part of work, and always felt it was my "purpose" in life, especially when my kids left home. Believe me, my kids and my husband never signed up for this either, but it has been a learning experience for everyone, and we are all better for it (believe it or not!!); that would be a bit of silver lining in this ugly cloud of darkness!!

    Don't give up....there will always be something you can try as a new treatment or a new medication, and there will always be another doc that you find out about (sometimes in the strangest ways!!) who MAY be able to help you out. Be good to yourself when you have the down days....I had a major crash and meltdown two weeks ago and was ready to give up, but I can't do that. It would destroy me, my family and goes against everything I believe in. I picked myself up again, with the help of my good friends and family, and I'm back in the game again. And it is just that....a game sometimes.

    On the bad days, treat yourself as you'd treat your best friend; with compassion and concern - then take another step forward and start again.

    Take care, and good luck.

    Tracy
  • Thankyou all so much for your words of encouragement I know its a long road and that everything seems to take time. A bit of potentially good news is that an old colleague of mine who also happens to be a spinal surgeon was talking to my best friend and has said he will happily reveiw all my scans and letters so far and if he can help he will.

    Even if it is a 400 mile journey it has to be better than waiting another 13 weeks for a referral to an anaesthetist for a consult about a caudal epidural and then another 13 week wait its madness and I actually work in the service. I dont want special treatment but I have to question the mentality behind making me wait when if I could get treated I may get back to work sooner rather tahn later even if its on lighter duties!!!

    Ah well it's a mad mad world but once again God bless you all
    Dawnie x
  • I learned that I had to take advantage of those who would give me special treatment when others would either make me wait or refuse to treat me. I have traveled from Japan to DC 3 times and will do it again if necessary because of that. You are the most important person in your life. The reason I say that, is that there's no way to be with or take care of anyone else, making them the most important person in your life, if you don't take care of you first!

    You must become selfish in order to become selfless.

    "C"
  • I like your last line....it says it all. Thanks for that.

    Tracy
  • dilaurodilauro ConnecticutPosts: 9,722
    Hi Dawniee,

    I've read your post and all the other replies and as you can see many of us have been in your shoes.
    Dealing with chronic pain is one of the more difficult situations we have to deal with. I think folks with chronic spinal pain has it more difficult. I am not saying that someone suffering from COPD, Terminal Cancer, etc does not have the same thoughts, but with Spinal patients MOST of the time, you cant see that there are hurting. You get all those "You look good today" statements and they can drive you crazy. So besides having to deal with the physical pain, we also have to deal with the emotional pain.

    But never, never let that stop you from moving on. Life is way to short and precious to allow ANYTHING to get in the way. Sure, having some medical problems may put a twist in things, make you have alter some courses, etc. But it is in YOUR control, no one elses.

    When I first realized that I could no longer do the things I loved to do, I just said "What the heck, what is it worth anymore" Then I realized, that I had to change, I had to look at life differently. I started to come up with things that I could do and that I love to do. Over the years I have gotten involved with so many worthwhile activities, many which I dont know if I would have been involved if I didnt have chronic pain.

    Today, I go on every day knowing that I will never be what I was years ago... But you know what, I like what I am today even with the pain. You find ways... You will
    And there will be times when you do feel despair and feel like giving up... Thats normal. Just never let the dark side of our lives get the best of you.
    Spine-Health offers a support system for everyone. So, please you can rant and rave, you can cry, you can shout.. People here understand. And if you ever need to do something offline, feel free to send me a message or send me an email.

    Please take a look at:
    http://www.spine-health.com/forum/chronic-pain/a-day-life-a-person-chronic-pain
    Many people responded to that topic I created, so you know you are not by yourself

    Please do take good care of yourself
    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
  • I don't know what else to add, other than I understand and relate to you. Last night for some reason I felt emotional and told my husband that I wanted to get life insurance on myself, so that I wouldn't burden him with my mounting medical expenses. I guess I was feeling a bit morbid and saw no end to this suffering. I don't know what the future has in store for me, and I believe that everyone here has some fear about it- I know I do.
    All we can do is live life day to day and take baby steps. Even though we aren't the same physically, we are the same person in our hearts and minds. >:D< >:D< >:D<
  • I recently got more life insurance recently for exactly the reasons you talk about.
  • I've been thinking about life insurance a LOT since the day I was diagnosed with cancer (June 2003). It's a shame really that it takes something big like pain, cancer, etc. to make us realize we should probably be responsible and get some, huh? I still don't have any tho, only because I can't afford it (I do have a policy on each of my boys), but it's definitely on my "someday list". I worry all the time about what would happen if something happened to me-who would be stuck paying the bill? For that reason I've told my 'rents that if I still don't have life insurance by the time I do die (if they're still around) not to bother with a funeral, burial, etc. Just have me cremated and let the kids fight over who "gets me" (as in my ashes).

    The REALLY messed up part is, when I was a child my 'rents did take out a policy on me. They paid the premiums until I married (at age 17-DUMB DUMB DUMB) then the responsibility became mine. Due to my controlling 1st husband, my policy was forced to lapse, so I lost it-my folks paid all those years for nothing! I really regret letting the jackhole push me around on that (well on everything).

    Now that I'm a cancer survivor, I know it's going to be extremely difficult, if not impossible, for me to get a life insurance policy in the future-that's a scary thought. I don't want to burden my children (or my 'rents if that's the case) with that so it's a huge priority for me to get it figured out as soon as I realistically can.

    So no you're not alone in your thinking along these lines...

    Chin up hun!
  • We tried to get a policy last year, and because I had been treated for mild depression and anxiety, I filled out a zillion forms and they denied my application....grrrrr!!!!
  • Dawniee every word you have written I am feeling, and it gut wrenching. I have 25 years service working with difficult teenagers and my life is now ruined by pain. I have given up the idea it will end, and its so hopeless at times. I have a loving partner too, a saint and the love of my life. The loss I have is extreme because I had it all, and now I have nothing I just inhabit this body of pain and many times I just dont want to be here. Other times its manageable but not a life that I recognise or want. I have to find my own way now I realise like you there arent people out there who understand the all consuming world of pain we inhabit Hang on to you, you are more than your pain. I wil try to do the same all the best Maz
  • Hi Dawnee I have had a very big cry and am reading a book called Ask and it is Given hoping to get amore spiritual perspective!! Hope you are having a good day

    Maz
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