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Pain and Loss of Self Worth
I was diagnosed with arachnoiditis 5 years ago following major spine surgery.
I think I've learned to live with the chronic pain and neuropathy, but I still struggle with the fact that I can't do what I used to do. I have expectations that I should at least be able to vacuum and cook a small meal, but I can't because after standing for 3-5 minutes, I have to sit down and let the pain subside. Traveling, shopping, or even walking for more than 10 minutes are out of the question.
I held a challenging and very active executive position for 40 years, working 10+ hrs/day. I raised a daughter, and volunteered at a local hospice. Now, at age 70, I sit in a recliner for most of the day and read and do crosswords.
I see so many ads of people in their 70's and 80's golfing, biking, baking cookies and I look within myself and see a sedentary, dull person. I suspect that other people must think that of me, also.
Is anyone else experiencing these negative thoughts about themselves? How do you get to the point where you can regain some pride in yourself--this new self that can't accomplish or contribute very much to family, friends, or the community?
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Hello @labgirl, @ellymayhem, @jlf2 and all who participate in this delicate discussion. I join you in the journey of rediscovering, reimagining and relearning to find self-worth. No matter the age, change is an inevitable part of life. For me, cognitive behavioral therapy (CBT) helped teach valuable ways of reshaping my outlook and mindset. When you think of loss of any kind, mourning is a process of healing. After allowing space and grace to mourn, the choices are - stay stuck feeling sorry, sad and lost, or strategize, problem solve, think outside of the box, like @jenatsky is suggesting for @sisenberg, and make the most of the cards you were dealt. This task is the harder of the two but most rewarding. Using resources, asking for help, delegating are some ways to strategize.
Rehabilitation of any kind whether it be emotionally, physically or behaviorally (or in my case all 3) takes courage. Dr. Sletten of Mayo's Pain Rehabilitation Center says:
Rehabilitation = "Courage with the acceptance of doing things differently."
@mguspixi25 shares how days may look different - some better, some worse, but refuses to be defined by the more challenging days. Some tools I find helpful are not comparing to the next person let alone our previous selves, exchanging negative thoughts for positive thoughts aka positive self-talk, and giving myself the same sound advice that I would give someone else I was trying to help. We are not often kind enough to ourselves.
Some folks on Connect have used the Curable app to help guide them through obstacles and challenges of chronic pain. Here's more about Curable:
- https://www.curablehealth.com/clara
Curable uses a biopsychosocial approach and addresses pain from multiple angles, similar to Mayo's Pain Rehabilitation Center (PRC):
- https://www.mayoclinic.org/departments-centers/pain-rehabilitation-center/sections/overview/ovc-20481691
Its not easy to look at life that doesn't look like you once imagined it would. I join you in it always being a work in progress. I'm wondering if you might consider a multi-discipline approach like Curable or a pain rehab center like Mayo PRC?
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4 ReactionsI 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.
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3 ReactionsHi @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.
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1 ReactionI 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.
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1 ReactionThe 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!
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1 ReactionI 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.
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3 ReactionsMy 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 🌺
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5 ReactionsI 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?
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2 ReactionsSure 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:
Do you happen to live nearby any of the three Mayo Clinic's?
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