Saturday, April 11, 2015

Learning A New "Normal" Living with Chronic Pain


Learning  A New "Normal" Living with Chronic Pain

Dealing with horrendous 24/7 chronic pain (moderate to severe chronic pain the past 5+ years, plus18 years prior to that of intermittent minimal to moderated neck pain), can leave one feeling lost, wandering around an endless "chronic pain maze," at times gulping for air, trying to frantically find ones way, only to feel there is NO WAY OUT! Not is it just the unbearable constant chronic pain, it is all the horrific affects one has to endure living with it! There is so much uncertainty on what to do! Who can help? What will make it go away? Where do I go next for relief? Why is all this happening to me!?!? When will it all end?!?!

I spent 23 years working in Occupational Therapy working mainly with the elderly population dealing with decreased function and strength in orthopedic, neurological, muscular, cognitive, pulmonary, cardiac and psychiatric diagnoses. Helping people recover and be as independent as possible, with whatever their physical or mental diagnoses left them to deal with in life often means learning to live life in a new “normal."  This was my passion! It still is! It always will be!

For the past five years, I’ve been one of those people learning to live life in a new “normal". Everything I worked so hard to achieve in my career and life had been shredded to pieces by my multiple spine issues. 3 cervical herniations, 3 lumbar herniations, lumbar stenosis, DDD, occipital neuralgia, cervical foraminal stenosis, cervical nerve damage (C2-3 level no physician wants to touch), brachial neuralgia, post-laminectomy syndrome, cervical radiculopathy, and SI joint arthritis. After my second of three spine surgeries leading to unrelenting intractable pain I sought several opinions from specialists looking for relief.

Eventually, I ended up with a neurological pain specialist at the University of Michigan, who is one of the top in his field that works with neuropathic pain disorders. After even more MRI’s and other tests than I already endured the previous 15 months, he stated the nerve damage along my spinal nerves lead to a neurological nerve disorder, called Central Pain Syndrome, thus leaving me with moderate to severe constant chronic pain. I was told by him, as well as several other specialists I sought treatment from, “I am very sorry, there is nothing we can do. You will have to learn to live with it.”  I heard it so much I started comforting them because I felt sorry for them having to tell me that.

Over the past five years, after attempting to fight this reality, denying its existence and trying to “push through the pain” to do what simple tasks, as well as heavy duty tasks, we all take for granted,  I realize this is not a mind over matter situation. For a time there I felt I might as well do whatever the heck I wanted, if I was going to hurt, I might as well have a good reason for it! That seriously was not a good attitude.Nor was it appropriate for me, as later reprimanded by my physician. I could have physically damaged myself. So, please, don't do that to yourself! But, I guess it is what one does when very angry at all the horrid pain. One cannot fight against this diagnose... It fights back! And it always wins! As of last year, having yet another inescapable spine surgery, causing the central pain syndrome to spread to my lower body, I am told the only option left is to have permanent implantation of a pain-modulating device, called a motor cortex implant.

Throughout all this, I have tried repeatedly to take theses shredded pieces of my life and rebuild a new “normal”.  Finding "tools" to be functional in my daily life to just get done what needs to be done, to take care of myself and our home with all this physical pain gripping my body is incredibly difficult to achieve. During all this, I was grieving! Holding tightly to what my life was, who I once was, as well as how this all fits into my future. I have struggled in my heart to find significance, a purpose, with where I was at.

Trying to be functional in life with all this pain is hard enough. But, one cannot escape going through the added weight of the intense emotions of all the loss this pain also puts the sufferer in. The denial, isolation, anger, bargaining and depression to hopefully someday finding acceptance are just so hard to deal with! Achieving acceptance can lead to a sense of peace and joy in the new “normal.” I want others to know it’s worth the fight to finally get to acceptance!

It can happen! It does take time. Way more time than we'd like! We just cannot push through all our losses. It takes a lot of work! While I was stuck in this mess, (always will be in many ways) I came across many others suffering as well! I hated to see so many suffering! Some at very young ages! Some all their lives! I especially hate to see those that get stuck along the way in the negative aspects! One of the many things I learned from the many traveling this same journey is that we all need each other! We need to help encourage and comfort each other along the way! We need to look for ways to find our new “normal!" We do not have to let it overtake us! We do have hope, a hope that we all can find a purpose in our life with chronic pain. That is what we need to find, and encourage others we come across to find as well!

I (with God's help, my husband’s, kids, grandson, some family, friends and knowledgeable physicians) have mostly put together the shredded pieces of my life caused by central pain syndrome to be as functional as I can be in my new "normal." I am finding my way through the maze of all the physical and emotional stress living life in chronic pain brings. After 4 1/2 years, I feel I am finally ready to work on this "acceptance" thing. I need it, for myself and as much for my family and friends. I have felt it in my heart here and there. Yet, I am still gripping tightly to what my life use to be! It's just hard to let go! I am at times afraid to let go, for it seems it will forever be lost to me. I guess it has already let go of me. It is my heart holding on to it all. However, I have slowly found moments of peace and joy, less fleeting, taking over my heart. Maybe it is because God's creation is springing forth with Spring finally arriving, but I am feeling renewed and ready to live again! Perhaps there is hope after all…

Part of my new "normal" is utilizing my skills in Occupational Therapy, as well as what I have learned on this journey of living life with chronic pain, to help other sufferers on this same journey to rebuild their new “normal.” One of the many subjects I will publish is a series regarding the losses we endure and the stages of grief due to these losses. Please click through the topics on the "Blog Archive" section on the left side of the page to see all the topics covered.

My hope is that you will discover something from the articles in this blog to apply in your pain journey! Tools that will help with understanding the many ways this life in chronic pain affects us, to increase our sense of control, ways to be as functional as possible with everyday living, as well as finding a purpose for yourself if you have not yet been able to find one.

I have met many living with chronic pain that express this life leaves them feeling that they don’t have much to give. But they are giving already. They give words of comfort and encouragement to others! If you have found something to add to your own knowledge, share it with others along the same journey. For if we each share knowledge, as well as the comfort we receive from others, with those we come across on this same journey we are truly helping others.

 



9 comments:

  1. I'm going through grieving my life the way I use to know it and I'm having a difficult time accepting my disabilities and pain as my new life. If it wasn't for my faith in God and encouragement of friends and family, I'm sure I would have given up. Thank you for starting this blog and reaching out to help other chronic pain sufferers. I'm looking forward to reading more and seeing what's in your "tool box".

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    1. Connie Russel, Thank you for visiting my blog! I was so excited I had a comment! Your words are truly an encouragement to me! I am very sorry for the hard journey you are on! I feel exactly the same about my journey and my faith, family and friends! A true blessings for sure! I do hope you can find support and encouragement here!

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    2. I have had chronic pain issues for 14 years now . My c-spine was unstable so I had surgery fusing my skull, C1, and C2 together. I had a birth defect where I was fused C3 to C4. No one will take the hardware out because I am now stable. The fusion of my c-spine has changed my life drastically including my difficulty in swallowing. I would appreciate any encouragement and any tools that you would like to share with me on my journey to continue to deal with the aftereffects of my surgery. Thank you for caring about others' well-being and lifestyles.

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    3. Tammy, So understand the C-spine issues as I have similar issues in C2-C6! And they attribute it to a birth defect or an injury at a young age also. I have swallowing issues, as well as singing and my voice goes out at times. It is good to hear you are stable. May it stay that way! I am hear to give as many "tools" as I can. It is frustrating I can't seem to get all the things out as fast as I want to! There are so very many areas to look at and get out to others! And of course the pain impedes my typing and so many other factors to get it all published! But, it is happening slowly but surely! Thank you for letting me know you are encouraged and my purpose in life is to help others on the same journey! Blessings to you,Tammy! Let me know if you have any questions at all! Blessings!

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  2. Thank you for posting. I look forward to reading more. our stories are very similar. In my case i have suffered from ON my whole life. you can find my story at rsjfitness.blogspot.com

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    1. Thank you for visiting and commenting! I will be right over for a visit Regine!

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  3. There aren't many people who can move past the pain and grieving into acceptance,( to a degree) and take what's left of our old self and re-imagine a new one. It's a long slow process but with faith and perseverance it can happen! I have CRPS, fibromyalgia, and nerve damage to the right side of my body, but if I stop and allow that to be a reality I fear the slippery slope of pain will overtake me and I won't function. I try to keep my mind and body moving so I don't focus on it, I give thanks for each day I'm able to care for myself and never take for granted the blessings I've received.

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  4. Thanks for visiting and leaving a comment! It is a long slow process for sure and hard for many to find their place of purpose, acceptance and peace in this. So glad to hear you are able to keep your mind and body moving and focus on other things! Giving thanks and focus on our blessings is major for many survivors! Keep moving forward and sharing your blessings with others!

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  5. Thank you for sharing such wonderful information! When it comes to health, there is nothing more important than managing to eat healthy food and doing exercise regularly.

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As always, please feel free to leave a comment, ask questions, or give suggestions!