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.

leannestork | @leannestork | Sep 15, 2023

In reply to @sisenberg "No I don’t but not working now so I can travel. Thank you for the info...." + (show)

Hi there About to go have my nerves burned in my neck and lower back as the blockers worked well.... we are hoping for a longer period of time doing it this way next. May i ask how long you got out of the blockers... take care

Rachel, Volunteer Mentor | @rwinney | Sep 18, 2023

In reply to @labgirl "This podcast was enlightening and thought-provoking. however, I'm skeptical as to what degree behavioral therapy can..." + (show)

@labgirl, Unfortunately, I can't determine what number of pain you may or may not have as cognitive behavioral therapy (CBT) is only one tool of the management equation. Mayo PRC teaches to omit pain behaviors (as Dr. Sletten talks about in the video) which is anything you do, say or think that reminds you of pain. Reason being is that pain behaviors access pain pathways in the brain and promote more pain. Calming and quieting those pathways may aid in the reduction of pain.

Pain is the main symptom, yes, but how do thoughts, behaviors, physical fitness, nutrition, lifestyle, socializing, giving back, etc... play a combined role in management of pain? As you speak of your failed attempts at finding relief or a fix, knowing that it's typically followed by let down which causes more upheaval of physical and emotional distress, it becomes this cycle of pain that is difficult to get out of.

I really do hear you and wish I had a perfect simple answer but the truth is is that when pain goes from acute to chronic, finding an overall strategy of stress-relief, coping and acceptance is a good place to start and that's where behavioral therapy plays a role. I'm happy that you mention acceptance. Only you know if you are ready to find or work on acceptance. It doesn't happen overnight, but bringing it up is commendable and a good place to start. Have you considered ways to help yourself get there? Might you consider adding CBT to your strategy of acceptance?

labgirl | @labgirl | Sep 18, 2023

Thank you for responding. I'll look into CBT a bit more and decide if it's right for me.
Many thanks, also, for being a volunteer mentor........this site is very helpful for so many.

Rachel, Volunteer Mentor | @rwinney | Sep 18, 2023

In reply to @leannestork "With tears in my eyes I thank you from the bottom of my heart for taking..." + (show)

@leannestork

With tears in my eyes I thank you from the bottom of my heart for taking the time to write this as i read your inspirational journey. I am in Australia and 52.... i used to buy business' , build them up and sell them.... we have built three houses together on our own... been together since we were 14 and 19. We have 2 children and 7 grandies... however 8 years ago through much stress at the time i had shingles in my eye, ear, mouth, face and head. Talking to a professor in your country he said it most likely went down my spinal cord as well given the amount of Neuro Problems i now have. So had to bring our business home and learn how to live with Lupus Fibromyalgia, Neuro Auto Immune, I lost all of my hair with Alopecia (now grown back) and ended up with 17,000 ectopic heart thuds after my third covid shot .
My heart doc said i should be tested for Reynauds' freezing all the time..... but honesestly i haven't go the energy to add another title because as my Doctor said.... it doesn't matter how many titles there are... all you can do is treat the symtoms. So have come to the conclusion that we will probably have to down size earlier than we hoped (the grandies love being in the bush at grammy and pa's house ) just so financially my husband doesn't feel like he is working so hard then having to help do all the things i can't (i still look after the client side of things) .
I have since had shingles, a spur cut out of my spinal cord and a cage put over C567, Just had a full hip replacement and need to do the other because lupus is eating me away from the inside out , hardware in my big toes and honestly it just goes on and on. My life has gone from being so energetic to my brain contstantly thinking about how to manage and live day to day..... i truly need some help knowing how to train my brain from thinking about my medical life because that is all my life seems to be now.... to something else
I would be ever so grateful for your knowledge on how you achieved this because i am sure hubby is sick of hearing about it because i am sick of living it.
Don't get me wrong ..... I am on call for our state to help families and first responder's after suicide which in a way was helping my own mental health... because helping others actually stops my mind from being about my health. Given i have lost most of my immediate family to a ripple effect of suicide myself Dad, Stepdad and Brother... Then my son lost his best mate to suicide which then lead him to Ice addiction and we mostly bought up our grandaughter ......I have had to take a slight step back to focus on healing my body after my hip replacement a few weeks back.
I am so glad you found the love of your life and feel supported , I often say to hubby surely you would prefer to be with someone like i used to be .... because honestly he admits he gets easily frustrated and doesn't remember the things that i have to ask him to do now... because i can't do them myself anymore.
I hope sunshine stays in your days.... because my only way of thinking about this..... if some poor mum has to say goodbye to her children or grandchildren due to cancer ... then i am grateful not to be that person. There is always someone worse off than ourselves.
Looking forward to hearing how you are going and wish you the most perfect day
cheers Leanne

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Leanne - I am with you, I hear you and see you all the way in Australia. Same age, same thoughts and feelings about husband needing to do more, same strategy of helping others to help myself, even same thoughts of terminal people battling - making my life look much better.

Wishing you joy, peace, and the continued ability to live in the now making the most of what you DO have. I am there with you and glad you found Mayo Connect.

Rachel, Volunteer Mentor | @rwinney | Sep 18, 2023

In reply to @labgirl "Thank you for responding. I'll look into CBT a bit more and decide if it's right..." + (show)

You are very welcome. Thank you for the acknowledgement. I'm glad you are finding support here. We're in this together. 😊

leannestork | @leannestork | Sep 18, 2023

In reply to @rwinney "Leanne - I am with you, I hear you and see you all the way in..." + (show)

Thankyou so much for replying. It really does mean the world. Sometimes i think we just need each other so we feel like we are not going around the bend hahahahaha.....
I hope you have sunshine in your day's and always feel like you can reach out to me because it sounds like we need it.

mike2024 | @mike2024 | Sep 19, 2023

I also live with chronic pain at 70 after an extremely full life.
I am learning to redefine myself from this chair and the icebags and anything else I can do to mitigate the pain.
I reach out to Friends in need and can cheer them up and on. I stay engaged with as many people as possible of all ages via social media and phone calls .
I surround myself with music and quiet. Meditation and breathing exercises have been a recent learned behavior and are giving me a great deal of mental and physical help.
Hang in there, you have a winning mentality.

Rachel, Volunteer Mentor | @rwinney | Sep 19, 2023

In reply to @mike2024 "I also live with chronic pain at 70 after an extremely full life. I am learning..." + (show)

Hi Mike @mike2024, welcome to Connect. I like your "tool box". Can never have enough tools to help with management of symptoms and life changes. How great that you learned meditation and breathing. It's never too late to learn new things! I never practiced either prior but now count on both for quelling symptoms. Mindfulness is a wonderful practice. Another tool of mine is nature. Are you able to get out and experience it for it's calming and soothing powers?

frances007 | @frances007 | Sep 20, 2023

in reply to @labgirl I have read your post and sympathize with you. I too held an executive position with an insurance company and if I thought that was painful, it is nothing like the pain I have, presently. You are very astute, as things could always be "worse." Like you, I have managed to accept my "condition" and not allow it to take over my life. I am active as I can possibly be. I mentioned to my neurologist during my last visit that I wanted to get my bike out and ride around like I used to do. Well, not like when I was mountain biking, but just ride around the area. He suggested to me that I get a three wheeler, to which I responded, "right, then I will look like a senior citizen and if people are staring at me now because I am so thin, they will only make more assumptions." However, my balance is rotten and while I could probably do a test run on my beautiful nearly new bright red Fugi mountain bike, I would more than likely tip over. A friend told me that if I decide to ride the bike, to be sure and wear proper clothing so I do not get a road rash. I told him I would because in another lifetime I had a fondness for motorcycles, until I didn't. Luckily I did have the proper attire, otherwise I am not sure how I would have survived the crash.
Those people you see in those ads are all fake, as are the ads for that OTC memory pill according to my brother in law's doctor.
I also do a lot of baking and channeling Martha Stewart on a regular basis. My baked bread turns out perfectly every time. While I cannot eat as many cookies as I would like, they are equally delicious, and I think I make them for people so that I can eat vicariously through them. I recently made a batch of heavenly cookies, ate too many and the "results were official." LOL.
Like you I also speak to a psychologist every other week on the phone. However, she is currently in the hospital as she had to have a tumor removed which I hope is not cancerous.
Life goes on, right? It is all about one's mindset, and mine is very intact. I take care of my best friend who has dementia, and now it feels like I have to think for two people, because she cannot think for herself. I do what I can to help her in the best way that I can to ensure she is fed good food, has activities to enjoy and things of that nature. Yes, it can be stressful. Why do I do these things? They give me purpose.

labgirl | @labgirl | Sep 23, 2023

Your comment about your position in the insurance industry brought a smile to my face! Thanks for responding~

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