Pain and Loss of Self Worth

Posted by labgirl @labgirl, Aug 26, 2023

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?

Interested in more discussions like this? Go to the Chronic Pain Support Group.

@sunirome

I have same feeling after a stroke a year ago. Cannot contribute as I used to and I was also very active. The work is to se our inner beingness which has its own beauty just because it’s part of existence. Like a dog or a cat or nature just “is” and has its own beauty without “thinking” they have to contribute to society. A different view of life

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Hi @sunirome, welcome to Mayo Clinic Connect. Sorry to hear about your stroke and how it has affected your daily life and changed your routines. It sounds as though you are coping as well as you can and you've found a good discussion with members like @labgirl, @ellymayhem, and @jlf2.

@sunirome, how you are healing and recovering from your stroke?

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@retirement75

Feel good about your past experiences and what you’ve accomplished in your former life. We’re in another stage of life and are presented with these health issues where it becomes a full time job taking care of oneself. It is very challenging to feel no control over these processes and how to meet our needs. I have taken online classes with local learning in retirement groups. I find book clubs are good for mental stimulation. Creative projects give me a lot of satisfaction. I’m also thankful that I am still able to care for myself.

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"I find book clubs are good for mental stimulation," especially ones like those that question the utility of 'great books' a position taken by a an accomplished prof at Comparative Literature at Harvard and staff writer at the New Yorker, Menand, who argues against (Montas) who is in the opposite Camp at Brown. Now that's a duel to test our neurons! In the end it's the Quality of the argument, for or against, that is really Enjoyable, not the side one takes. Life has pleasures to offer in a thousand different ways if we keep our curiosity alive.

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I do empathize with you @labgirl! It is not easy to go from a working professional with an active life to one that is very limited. I am struggling like you. I am a 54 year old single parent of a 14 year old son with no family support. I also just recently got laid off along with 5,000 others. I do not know what I am going to do about health coverage or an income so I can provide for my son. The job market is tough and I have held good jobs in the past but my health and chronic pain make it so hard to know what I could actually do now physically. I have been working remotely for 2.5 years and the thought of driving and sitting/standing/walking distances scares me! There is also a lot of discrimination out there hiring anyone over 40 and especially if you don’t look very healthy (me)! I can get very scared and discouraged at times because, like you, I want to do so many things in my mind but my body won’t cooperate. I also can’t stand long at the counter to do dishes or cook/clean like I used to. I am even wondering if I should apply for disability rather than try to find a job with medical benefits. My faith is what helps me stay grounded and I am trying to take one day at a time and be realistic on what I can and cannot do and ask for more help. I need to plan my day when I have the most energy, prioritize what I do and when, and take frequent breaks. Now that I am not working, I really need to focus on self care which I have neglected to my own detriment. I am also going to get involved more at my church so I have an extended support group for me and my son. There is a bible study zoom class that I am signed up in so I can socialize with others without needing to leave my home. You may be able to tutor, mentor or volunteer your time remotely via Zoom/web meetings/making phone calls and leverage your prior experience to help others. Best wishes to you!

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Thank you for your thoughtful comments. You're dealing with incredibly challenging circumstances. I'm glad to hear that you have a supportive church group.
Like you, my faith is my most important source of strength.
I have also found that sharing my concerns on this site has been incredibly affirming and inspirational.
Sending a prayer and all best wishes that your current situation improves.........
Janet

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@sisyphus

"I find book clubs are good for mental stimulation," especially ones like those that question the utility of 'great books' a position taken by a an accomplished prof at Comparative Literature at Harvard and staff writer at the New Yorker, Menand, who argues against (Montas) who is in the opposite Camp at Brown. Now that's a duel to test our neurons! In the end it's the Quality of the argument, for or against, that is really Enjoyable, not the side one takes. Life has pleasures to offer in a thousand different ways if we keep our curiosity alive.

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While I don't know about the debate concerning 'great books', I agree that it's important to keep curiosity alive. Fortunately, books provide an endless source of topics to explore. Archaeology has now piqued my interest and I'm fascinated reading about the antiquities that have been preserved and discovered.
Whatever would we do without books??

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@dlydailyhope

I do empathize with you @labgirl! It is not easy to go from a working professional with an active life to one that is very limited. I am struggling like you. I am a 54 year old single parent of a 14 year old son with no family support. I also just recently got laid off along with 5,000 others. I do not know what I am going to do about health coverage or an income so I can provide for my son. The job market is tough and I have held good jobs in the past but my health and chronic pain make it so hard to know what I could actually do now physically. I have been working remotely for 2.5 years and the thought of driving and sitting/standing/walking distances scares me! There is also a lot of discrimination out there hiring anyone over 40 and especially if you don’t look very healthy (me)! I can get very scared and discouraged at times because, like you, I want to do so many things in my mind but my body won’t cooperate. I also can’t stand long at the counter to do dishes or cook/clean like I used to. I am even wondering if I should apply for disability rather than try to find a job with medical benefits. My faith is what helps me stay grounded and I am trying to take one day at a time and be realistic on what I can and cannot do and ask for more help. I need to plan my day when I have the most energy, prioritize what I do and when, and take frequent breaks. Now that I am not working, I really need to focus on self care which I have neglected to my own detriment. I am also going to get involved more at my church so I have an extended support group for me and my son. There is a bible study zoom class that I am signed up in so I can socialize with others without needing to leave my home. You may be able to tutor, mentor or volunteer your time remotely via Zoom/web meetings/making phone calls and leverage your prior experience to help others. Best wishes to you!

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I too live wil pain everyday. I just wanted to tell you to apply to the IRS. I have several family members that work from home for them. Pay is decent and benefits seem to be good too.
Good luck...

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@labgirl

While I don't know about the debate concerning 'great books', I agree that it's important to keep curiosity alive. Fortunately, books provide an endless source of topics to explore. Archaeology has now piqued my interest and I'm fascinated reading about the antiquities that have been preserved and discovered.
Whatever would we do without books??

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I was scouring the internet to see what reliable sources have to say on this issue -- especially about what one might be able to do on one's own without much effort. Besides the usual biggies, (yes NIH has this to say: Other important treatments include physical therapy as well as cognitive behavioral therapy, biofeedback, imagery, and possibly other forms of psychotherapy and support) have you dug up what is useful? Painnewsnetwork has some info but I'm not sure how reliableb. Wikipedia wud be another source I'd look at. I'm big on basics: wholesome food, physical activity (did u see Elaine LaLaine, at 97? does incredible moves, as new York Times recently covered) and redusing stress. I say this as one who has seen much ups and downs in life and at 80 still able to be fully independent, without any meds, tests, etc. But I do --as you note -- do what gives me pleasure including both mental and physical exertion. wud be good to know your next steps. All Best.
https://www.ncbi.nlm.nih.gov/books/NBK555973/

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I can totally relate. I’m 59 years old and I’ve been struggling with CRPS for 15 years I’ve been accomplished academic pediatrician for over 30 years and finally had to throw in the towel. I cannot work anymore because of my pain and nervous system all allow me, I’m very curious about how you obtain the diagnosis of arachnoiditis. I have been to many many specialists in many different fields and no one has ever really given me a prognosis or big picture. Look at what my life would be like. I try to find moments of peace and joy , however I feel my body is declining and I cannot stop or slow the process. I have changed my diet to the point where I don’t have any sugar or gluten or red meat. I am on 17 supplements a day I use various topical creams to help with nerve burning discomfort , I am weak and fatigued, but push myself to be as physically mobile as I can in small chunks. I have often lost. Hope only to muster up a few mitochondria of hope to try something different whether it’s a accupuncture functional medicine are you Vedic medicine but then once again , my body fails me . I would like to find the energy to find the cure. I worry daily, that my brain will fail. Me too as my body is now that I am not working. I am trying to find ways to fill my day that bring me comfort and perhaps show kindness to others. My whole entire professional career is gone, but my will to help people is still there, so if there’s anything I can do to help you on your journey, please reach out

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I went through an entire time of life relearning who I was, after my entire identity physically and mentally/emotionally was changed after a significant traumatic event which resulted in brain and body injuries where I’ve had around 26 major surgeries (I don’t count minor operations), and it was strange to have to get to know an entirely different ‘me’.
I still mourn the person I used to be, only feeling a sense of she, while still learning who I am ‘now’ even after 20 years passing since the event.
There’s pain physically (of course), and mentally, and the sense of loss can be profound at times (loss of losing who I was, but loss in the sense of being and feeling ‘lost’).
To find an interest, a thing you can apply yourself to, while relating to and feeling good with that interest is hard..and compounded by actually finding how to fit that interest into your life in a practical way, and how that interest can work to be productive for you and for others.
For instance, I am into social justice for vulnerable people, and as a person with low immunity (I have a bone marrow disorder in terms of immunity production), physical disability affecting mobility (I walk using crutches), and cognitive challenges, this is a very hard role for me to be successful and productive in, and I face lots of stigma because people treat me like I’m ‘stupid’ and need to be treated like a child (I quickly remind them that not many small children have a degree in health, so appropriate conversations based in mutual respect and focussed on the topic at hand is much more appreciated), so it takes a lot of time and effort just to find where you can have the space to apply your passion and skill, once finding what your interest area is (not all cognitive challenges relate to intelligence; some relate to the ability to read and write, for instance).
I still have my moments of distress (I do not consider them moments of ‘weakness’, because even on bad days, I’m not weak; I’m just not managing as well due to a higher level of impact from what I am dealing with every waking moment), but that doesn’t mean that - even days where I cry - I am any less a person with potential and something I can achieve on any other day. And I choose it to be that the better, more functional days are what define me - they are who I am - not the less functional days. And I refuse to let anyone else define who I am, no matter who they are 🙂

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@sisenberg

I can totally relate. I’m 59 years old and I’ve been struggling with CRPS for 15 years I’ve been accomplished academic pediatrician for over 30 years and finally had to throw in the towel. I cannot work anymore because of my pain and nervous system all allow me, I’m very curious about how you obtain the diagnosis of arachnoiditis. I have been to many many specialists in many different fields and no one has ever really given me a prognosis or big picture. Look at what my life would be like. I try to find moments of peace and joy , however I feel my body is declining and I cannot stop or slow the process. I have changed my diet to the point where I don’t have any sugar or gluten or red meat. I am on 17 supplements a day I use various topical creams to help with nerve burning discomfort , I am weak and fatigued, but push myself to be as physically mobile as I can in small chunks. I have often lost. Hope only to muster up a few mitochondria of hope to try something different whether it’s a accupuncture functional medicine are you Vedic medicine but then once again , my body fails me . I would like to find the energy to find the cure. I worry daily, that my brain will fail. Me too as my body is now that I am not working. I am trying to find ways to fill my day that bring me comfort and perhaps show kindness to others. My whole entire professional career is gone, but my will to help people is still there, so if there’s anything I can do to help you on your journey, please reach out

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Doc, it’s a shame you couldn’t find some type of remote or virtual work you could do in medicine? I know many docs who have side-lines of medical record reviews for companies. You could consider mentoring pediatricians in training as a way to use your years of skills. I’d hate to see your education lost and sorry for your situation. My nursing career was cut short after fracturing my spine in an earthquake in Ca in 1988.

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