Pain and Loss of Self Worth

I recently signed onto Curable and will try what they recommend.
It does come down to accepting the "new you" and creating a life that is in alignment with your abilities.

Hi @rwinney, I would never engage with a pain clinic again; the repeated attempts have done more damage and zero help. Simply because, pain itself is not my problem; I have been dealing with extreme pain throughout my life (from birth, actually, where I was broken -bones - and dislocated to be removed while stuck during a home birth process due to my mother being trapped in by snow and unable to reach medical help..I survived), so I am very accustomed to the sensation and emotional distress of pain - this is not my issue. The issues I have are due to the loss of function in my body as a result from damage - this is why I have difficulty with my body (because it can’t do what I want it to do anymore) and my brain (which can’t do what it used to do anymore -I was a tertiary education teacher).
Like when someone has lost permanent function in a part of their body, forcing them to go through either the disconnectedness of trying to move that part and it just doesn’t, causing distress and making them waste their time in doing so for the sake of everyone else satisfying their curiosity because they did not previously believe (which is intensely demoralising), or forcing them to engage in mental reformatting like with various psychological programming exercises, can be harmful.
I have received harm from both of these types of ‘treatments’ being forced to participate, knowing they would not help me because their foundation is based on addressing pain and where pain is not my problem (*permanent, unchangeable* loss of function is), then I am directly unwilling to be further harmed by rigid formats that feel like brainwashing while totally not addressing what I need.
And I don’t believe in AI being an appropriate medium to individually address each person - I believe only a person can individually address each person (thus, an AI formatted program designed to exclude the personal approach between humans is not for me).
I have lived through periods of cult-like indoctrination, and AI has the same sense to it, and something I don’t want to sense again. So do psychology formats designed to convince someone to follow a pattern of thoughts, behaviours, and actions, because they do not address many other thoughts, relationships, and components of a person.
Thanks for the mention and paraphrase of your understanding of my previous comment, however please I kindly ask that I am left out of comments that are bringing in recommendations, therapies, and clinical tools that I do not align with. Thank you.
And just to be transparent (removing the possibility of assumption), I am very happy with who I am, what I have learned in life, the help that I am able to provide to myself and others on various levels (from national systemic levels to the personal one on one level), and I get by independently, while being significantly different from my previous level of function and ability. I am happy in my heart, living with lots of peace and harmony within myself. Just because I may have times I am distressed doesn’t in any way require me to be modified by interventions when I am living successfully in all the ways I define (keeping in mind, living successfully is totally up to the individual to define, not anyone else). And I choose to live in the reality that all the bad and the good things that have happened to me is what shapes me; there is no way I would want to diminish or forget any of them using an intervention. Happy isn’t not feeling pain, or not living with hardship. Happy and content is being ok despite what you’re going through, and that’s good enough for me without the add-ons of interventions like mentioned above.

I was sad to read of your recent experiences. Through the Mayo support venue I've learned that there are many, many more of us out there than I could have imagined.
It's just helpful to know that others can relate.
Regarding your question about my diagnosis of arachnoiditis, the diagnosis was made by the radiologist who read my MRI and was confirmed by my orthopedic specialist. I knew nothing about this condition (or the fact that it could be an outcome after spinal surgery). If I had fully been informed of the risks of my 8 hour long back surgery, I don't know if I would have proceeded with it. I was in tremendous pain, though, and felt that I had no options.
I hope that all of us in the chronic pain situation can find some peace and new ways of thinking about our situation.

The number and quality of responses to my original posting about pain and loss of self-worth have been amazing. Each one of them has offered positive ideas about how to move forward and I am already working on incorporating some of them.

I have to say, though, that I'm not inspired as you are by stories of 97 year olds with few medical limitations. I'm happy for them, but not all of us are in that situation (for many reasons). The commercials and ads showing seniors biking and hiking, etc, just make me sad, so I try to avoid them. If they inspire you and others, though, that's great. One solution doesn't fit all
Thanks for replying and offering suggestions.......every idea helps!

I equate those kinds of unrealistic representations as outliers to the collective experiences of people - just like the way some media represent women physically; it’s just not realistic for the majority…
I also avoid these types of representations because they don’t seem to do anything besides try to convince a person they need to conform to an expectation, and many times, that is unattainable and that causes distress.
The only time it tends to impact on me is when I have interactions with people clearly older and much more functional than me who say ignorant things aligned with their expectations of someone my age while disregarding my situation (eg: “you’re young enough to be doing *insert said expectation here*, just put some effort in”) to which I then patiently reply with some gentle raising of awareness - I don’t want to overtly disrespect my elders - regarding appropriate interactions when discussing a persons disability with them.. ie: discrimination and selfishness directed at others are not acceptable, neither is judging and expecting a person to function just because you do.

My apologies for any misunderstanding. I was not suggesting that you require intervention, I was simply referencing your positive outlook and acceptance. It is wonderful that you have happiness in your heart and live in peace and harmony. I'm pleased for you.

Thank you for sharing your journey and what has worked and not worked for your circumstances.

Thanks for clarifying 🙂
I was more concerned with being mentioned alongside the suggested treatment regimes/interventions, because I have been harmed by them, and therefore do not want to be associated with the promotion of them (by ‘them’ I refer to pain clinics, psychological services, and the resultant interventions that I have been exposed to, in Australia). I wanted to give a reason as to why I don’t want to be associated with these kinds of services/interventions, and that is why I explained my experiences (rather than briefly say something like “please do not associate me with treatment recommendations/interventions”).
I believe that to consider interventions is an intensely personal decision, and engaging in them can have significant impacts for better or worse (just like any intervention; surgery, for eg, can work well or be a disaster), so the framing and use of personal experiences in putting forward a therapy/intervention needs careful consideration 🙂
I’ve had conventional spine surgery that has not worked, and I’ve also had spine surgery that has worked but was and still is controversial - I still get criticism from a variety of medic sources for their beliefs on both sides of the ‘what works and why’ argument, in terms of their beliefs, rather than simply considering the results as drivers for future decisions in my case (I say this to illustrate how these professionals have their biases that impact on care delivery, despite knowing that not all care delivery/interventions work for everyone and to disregard outlier effects is essentially negligent in practice, because not everyone fits at top of the bell curve, or within one standard deviation of the mean).
Thanks so much for your understanding 🌺

I have done CBT and also benefitted from the Lin health app for chronic pain. I had an excellent coach via telemed.
I am interested in Mayo pain /CRPS REHAB. How do I apply or get info?

Sure thing. Here's a link to apply to Mayo Clinic:
http://mayocl.in/1mtmR63
You may also find the following video from Dr Sletten of Florida's pain rehab center, helpful. He provides insight to chronic pain and Central Sensitization Syndrome.

Dr. Christopher Sletten -Mayo Pain Rehabilitation Center:

Hello,
Firstly, I hear what you are saying and I am totally empathetic and understand the scope of your current existence as it mirrors mine of over the past 32 years. I am 69 years old and recovering from Prostate Cancer surgery about a year ago.
However, my total disability(s) struck me when I was a very healthy, athletic, a successful businessman in a very happy marriage with lots of interests and passions. I caught a viral type of infection on December 30, 1990 and by August of 1991 I was mostly bedridden and home confined. Horribly exhausted with no strength or stamina to do anything. My cognitive dysfunction prevented me from reading. Additionally, I was in extreme pain 24 hours a day with migraine headaches, nausea, muscle and joint pain while feeling so weak I could barely walk to the bathroom and back to bed.
I won’t even go into the types of disease states I was eventually diagnosed with and everything associated with the facts that there are no treatments or cures for my illnesses and associated disabilities.
Thankfully, I had a very loving and dedicated wife who took care of me for the first 11 years before everything in totality took its toll on our marriage. I set her free because she was starting to become debilitated from all of the stress and challenges of caring for me. We still love each other to this day. We’ve both remarried.
I just wanted to provide you with some background before offering my comments regarding your situation and how you feel. It’s very unsettling as a human being to go from a state of total self reliance with the physical, mental, cognitive and emotional strength and abilities to do anything you want to barely being able to care for yourself or do much of anything at all. Reinventing oneself is difficult enough when you’re quite fit and able. It’s entirely a different and more challenging situation when you’re feeling very ill, weak and debilitated etc.
I was and remain a very strong emotional and stable person. However, at my worst, (including sleeping an average of 18-22 hours per day) while being mostly bedridden and home confined for over 20 years!!! I was challenged far beyond anything I thought was even possible to experience and still survive! (There were some very critical times when I almost didn’t).
I started to listen to a lot of books on tape, cd’s and audiobooks because I couldn’t read without exacerbating my symptoms. This was the most helpful thing I found to do and be a part of while struggling to find some kind of existence I could call life or living life.
Listening to hundreds of books on spirituality, (not religion), self improvement, cognitive therapy and many other topics on health, disability, illness, surviving, personal growth, the human body, healing alternatives and many others etc. We’re and remain a very stabilizing part of and if my life. Although I can do more now than when I was totally bedridden etc. I am not able to live anything close to a normal lifestyle or function on a normal basis.
I had to retire at age 36 due to the severity of my disabilities. I have not been able to return to any kind of work or gainful employment since then.
Fortunately, I had private disability income insurance that saved me financially until age 65 when the benefits expired.
Fortunately, I remarried over 10 years ago and assisted my very smart and capable wife who has a law degree and MBA get into
selling residential real estate. She is very successful and supports us financially. I have some Social Security and some other assets to contribute but I would be in a horrible financial position without my beautiful and adoring wife. We have been able to “ham & egg” it before my disability income ran out so she had enough time to get herself financially established in her real estate career. I have become a “house husband” and do everything I can to support her in her career by doing as much as possible around the house and taking care of our personal administrative needs so she doesn’t have to address those situations or conditions and can totally concentrate on her career.
It’s a far cry from all of the many talents and capabilities I used to thrive from and the successful business career I once had etc.
However, I have learned to be very thankful, grateful and appreciative for everything and anything I can do in my life with whatever abilities and strength I have to enjoy them.
I still spend far too much time in bed and around the house but I’ve been managing this lifestyle for over 32 years now and have come to accept that “IT IS WHAT IT IS!” Thankfully, I have a wonderful relationship, marriage and partnership with my incredible wife and she feels the same about me. Through my determination and desire to forge the best life I can with what I’ve got etc. I feel as complete as I can be. Would I prefer it to be much better including my substantially improved health conditions? Absolutely. However, I’ve done and tried just about everything possible to improve and recover yet my results are what they are or are not! I hope you have somebody or some family who can assist you. The biggest shift I made after being bedridden for the first 7 years of my disabled life was as follows. “Phil, this may be the best your health might ever be again for the rest of your life. Instead of waiting to feel better or recover to start living your life again. Your life is happening now so you should make the best of whatever it is and what you have!” I started to focus and appreciate the things I could do and thought less and less about all of the things I could no longer do or would never be able to do again.
Life can appear to be very, very unfair. However, regardless of what happens to us we are still the “Director” of our own movie!
Nobody can be 100% responsible for what happens to them in their life. However, we must absolutely be 100% responsible for how we manage the circumstances that occur in our life! You can come from a much more powerful and self actualized position and feel much more empowered managing your life this way versus some of the alternatives.
I would never be so bold as to tell anybody how they should feel, do or manage their life. I am only sharing some of the choices that have assisted and enabled me to enjoy a much better life than I otherwise would have.
I wish you all the best, love and happiness you can provide yourself with the life you have.
GODSPEED