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Alive but not living

edited 10/02/2014 - 11:09 AM in Chronic Pain
Hello everyone. It's comforting to see I'm not alone in my experiences, yet heartbreaking to realize how many people are suffering out there. I tend to be wordy, so let be get right to it. 17 years ago, diagnosed with psoriatic arthritis, hlab27 positive, ankylosing spondylitis, and the best one yet, reiter's syndrome. I know im in a deep depression. Cant get enough sleep, meds are losing effect, raising two daughters alone and doing my darndest to hold down a full time job. I've done all I know to do
..no sugar...no gluten...no wheat....probiotics, all of it. I'm a PhD in autoimmune illnesses. But I feel doctors have failed me, friends and family don't believe me (it can't be THAT bad! ) And now I feel like God has walked away too. Pain and depression are exhausting and do this thing to us that make us feel crazy. I used to be happy. Always smiling. Full of life, hope and optimism. Not so today. I dont know this person I am today. Cant tell if I hate her, feel sorry for her, both? I wait for the moment I can get home and go to bed just so I can not feel pain for a few hours. I want to be well but I don't see it. I have little to no hope. I hide my pain well because it makes others uncomfortable. Smile, smile, smile....while inside im dying.


  • almost 20 years in pain .very little quality of life .on narcotics for intractable pain {just been to the doctors and she has upped the amount to try to keep the lid on the pain and make my life a little more bearable .I also suffer from sleep problems and have done for around 15 years despite having state of the art sleeping kit mattresses and recliners .my life has been altered too for the worst /been through the usual pain clinics and had about every treatment available including 4 spinal operations ,so I have a good idea what you going through .you have my sympathies .will private massage you if you want to chat
  • dilaurodilauro ConnecticutPosts: 9,859
    until then, you always need to maintain a positive outlook and attitude. Once we start to feel defeated, we are defeated. But no one can defeat us but ourselves.

    I know its not easy, it know its a struggle, but for the past 63 years, I've come to realize its worth the struggle.
    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
  • determines outcome
    that your still fighting on some level shows that deep inside, there is a fighter, on the ropes, but still swinging
    that your still trying, everyday
    shows that depression is nor winning the fight, it is only using your best parts against you, that is your mind and spirit
    keep that chin up
    keep swinging
    William Garza
    Spine-Health Mod

    Welcome to Spine-Health

  • with having chronic illnesses and pain? Sometimes, when we are faced with chronic conditions, the best tool that we can provide ourselves with , is someone in real life who is willing to listen and can give us a few tools to cope with those days when it all seems so overwhelming.
    A good therapist can do those things, and offer support and an ear or shoulder when needed, and it does help.
    Also , medications also can help change the way we view the illnesses that we are dealing with, as depression and isolation can make learning to cope that much harder.
  • I came back to the forum today to check on my previous post and saw your subject line and just had to read. You took the words straight from my mouth! I am a registered nurse who has worked in the psychiatric setting for over 25 years. I also am a chronic pain sufferer for the last 15 years after a previous back surgery. I've coped with the pain fairly well until last May when it took on another dimension. (Neuropathy and burning feet.) This has been the proverbial straw that broke the camel's back. I've tried fighting this looming depression with everything I've got and I have not moved off go. An hour ago I had a discussion with the "Man" above which ended in quite a torrent of tears. I just can't hold them back any more. I really don't know what to pray or ask for...maybe acceptance? But that doesn't offer much comfort at all.

    I don't tolerate medications well but this week I started on an anti-depressant med. So far no change but I know that it takes time to build the blood levels and change brain chemistry. And like you it is essential to "wear the mask" around my family. When I cry or try to express my hopeless feelings to my husband, it totally unnerves him---he tries his best but obviously it is beyond his ability to offer me the kind of compassion and comfort I am desperately seeking. (I am not blaming him--he tries to understand but has his own limitations.) When I cry to my best friend (again the most wonderful friend I could ask for) she replied..."Well, why don't you take 2 tylenol?" It actually made me laugh because I know she would do anything in the world to help me but because she has never lived with chronic pain or depression, has no idea what this journey is all about. But hey I'm giving hubby and BF credit for trying. LOL! Sometimes after I do vent I feel worse...guilt, embarassment, shame for not being able to control this on my own. Lovely emotions, huh?

    I will end this response and force both of us to cancel out that line about "no hope". Let's go with at least a little hope and recognize our tiniest of victories. And know we connected with another soul who truly knows the depth of feeling in this life long battle and commitment to fight pain.
  • armelindarmelind South TexasPosts: 88
    I have become a master of it too. Family functions, work, shopping, everything. I have to smile or it makes everyone around me feel bad....so what! Oh well we gotta do our best right?!

    Keep fighting...you owe it to your kids. Be the best you can. Hopefully having positive thoughts will bring positive-ness to you.

    Good Luck!
  • Alive but not Living! Yes! Pretty much sums it up. Same here my friend. I am so sorry that you also find yourself in this situation. You are not alone. I understand exactly how you feel. I am pretty much bed ridden and home bound now.
    Sorry to hear of your situation also Nurse Linda. Hugs. I also suffer with severe depression from living so many years in chronic pain and disability!

    I had a Near Death Experience when I had Liver Failure and it has been the only thing that has been keeping me going. Holding me together. There is a God and there are many beloved beings who love you. I will tell you that. You are loved more than you know. Hang in there. I believe there has to be a reason that some of us are having such a hard life (if you can call it a life ; () maybe we are Angels and this is our last hard test before we can move on to a beautiful, wonderful life full of love and all the things that we are missing out on. We must learn compassion. That is how I think of it. Meditating helps me. Give it a try.

    You should apply for disability benefits my friend. You have ALOT on your plate. I know you would prefer to work but if it is getting to be too much for you then that may be something you might consider. I have been trying to get disability benefits for years now so don't wait too long before you start the process.

    I send you love, compassion and understanding. God it is nice just to have someone who understands isn't it?
    God Bless all of us who are suffering with chronic pain and chronic health conditions.
    With Love and compassion,
  • Ranchhand said:
    determines outcome
    that your still fighting on some level shows that deep inside, there is a fighter, on the ropes, but still swinging
    that your still trying, everyday
    shows that depression is nor winning the fight, it is only using your best parts against you, that is your mind and spirit
    keep that chin up
    keep swinging
    Ranch hand,
    Thank you so much for this. It helped me out so much today. Feeling really low.
    I am a fighter!
    I am still fighting!
    Thanks for reminding me.
    God Bless you and all of us who are fighting.
    With Love,
    Emerald : )
    God Bless all of us who are suffering with chronic pain and chronic health conditions.
    With Love and compassion,
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