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.

What an awful experience you had! Know that there are many, many others who understand your pain.

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Spirituality can help with just about everything. The BIG but is we are all different have different beliefs and understanding of the world. Most spiritual traditions believe in free well. I do as well. I am a Buddhist and I practice daily and I tell you with certainty that without my spirituality I’m not sure that I would be alive now. That being said, if you go to a doctor, you need physical advice for medical problems. You didn’t go to a spiritual counsellor and I don’t think this type of advice is particularly useful. Why do you feel like a victim? If in fact, your doctor is right about that. You just can’t snap your fingers and get over things. There are many strategies that we can use to improve how we feel about ourselves and others. But your concern seems to be pain. And in my opinion, it is inappropriate to give this kind of carte blanche advice, which to me is completely unprofessional. If you have experienced trauma, it could influence your pain, but it probably doesn’t cause it.
Pain management has many aspects: sometimes drugs are useful. They are to me without them. I would be in excruciating pain, so bad that it affects my heart and blood pressure. Being in pain all the time is a huge emotional drain. It can make you tired, depressed, and cranky. In many cases. Therapy can help, but not always. Can you tell me a little bit more about yourself? Maybe there are some strategies that I use that could help you and maybe not. Talking I find, usually does help. I am so glad you replied to me. Please feel free to contact me anytime. Sending hugs and blessings.

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@philipsnowdon

Hello,
I certainly understand , empathize and appreciate how you feel. I’ve personally dealt with several or more severe disabilities and debilitating symptoms and ongoing side effects for over 32 years.
Firstly, the losses of lifestyle and physical strength, stamina and ability to participate in life as you one did are real.
It no not “negative” to discuss and share what you’ve lost and how you feel. The circumstances you describe are FACTUAL. Most people in society do not experience these kinds of losses and to the magnitude you have so it’s very difficult and challenging for most people to authentically relate to them. The Michael J. Fox quotations are very genuine. Coming to a certain level of “ACCEPTANCE” about what is and how it’s been in a peaceful, accepting and graceful manner don’t come easily for most of us. Especially those of us who were very active, successful and leading full lives. Sometimes, the amount of pain, loss and suffering are unbearable. At some point in time I realized things had become so bad for me that I was “Suffering from the Suffering!” I began to understand that this Chan happen over a long enough period of a seriously debilitating lifestyle. However, I also learned that it was up to me to change this and that in fact, I could learn how to manage my suffering so I wasn’t complicating the situation for myself. Your initial and ongoing suffering from the pain and losses associated with your disability are 100% real and genuine. However, when we start to emotionally suffer about or over our suffering we’re adding an additional layer that doesn’t need to be there and that in fact……we’ve created and are responsible for. We can’t always control or manage our suffering from the pain and loss but we can manage and rid ourselves of our own self inflicted “suffering over our suffering!”
Long term severe debilitation can take most of your life away and that’s also a fact and reality of the situation. We can’t control what happened or the ongoing results and circumstances. However, we all must be absolutely 100% responsible for how we manage all of the circumstances and challenges in our life.
I wish you the very best and hope that will continue to succeed in managing your debilitation in a way that helps you grow, become kinder and wiser and more gracefully able to accept your life condition as being………….”IT IS WHAT IT IS!”
Kindest regards and best wishes always,
Phil
GODSPEED

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As I sat here ready to begin the day “suffering over my suffering”, I was graced to read your comments. I’m not alone. I have given up much ROAR as I lived, worked, and raised my children. Now I’m reduced to a whimper. It’s up to me to change my attitude and not let this conquer me. Thank you (and all here) for the encouragement.

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@kendallchase

When I tried to express my feelings to my Pain Management doctor (no quality of life, controlled by pain and weakness, etc) she said I should find Jesus and get over my victim complex.
Not sure what to think of this.

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She obviously has no understanding of your suffering and how it's so draining.
Never thought I'd be in this situation either.Was so fit and active.At home with so much pain from Undiagnosed Conns disease. Dr thinks neuropathy from long standing medical problems.
I do emphasise with your situation.
Bored if I sit around, in pain if I try to do anything even taking a shower exhausts me.
Praying for a cure for all of us.

O

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Hi I do relate very much to your illness!,
My circumstances are different but like you am in constant pain from late diagnosis of Conns disease which seems to have destroyed nerve fibres/ small blood vessels.
I too held a responsible position for 40 years and am now mostly at home having to constantly rest between tasks.
If I try to do anything physical I am in so much pain afterwards, fatigue is crippling.
Some days I sleep 16 hours a day.
To make matters worse, my husband is behaving like a spoilt child because we can't take a holiday! And complains about doing anything in the house.
I share your frustrations, am only 65 feel 95.

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@kendallchase

When I tried to express my feelings to my Pain Management doctor (no quality of life, controlled by pain and weakness, etc) she said I should find Jesus and get over my victim complex.
Not sure what to think of this.

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It seems when Doctors have no solution they sometimes say dumb things. After expressing how depressing my diagnosis of severe lumbar arthritis and DDD which was causing PN, my neurologist said “oooh my back hurts”, in a snarky way as I was walking out. Obviously no compassion and no solution which I assume reflects on medicine and in particular his inability to help. Yes I need to accept that he has nothing to offer and it is entirely up to me to find a way to live with my age related maladies but still…. I have to admit I wouldn’t be any better at his job and would probably get tired of hearing people express their feelings about painful conditions. But it is their freaking job! As far as the Christian doctor goes, of all people she should have compassion. If she gave you her advice in a loving way then that is one thing but if not: she was a “Clanging Cymbal” (Bible) There are a lot of Christians that have not read the instruction manual and are pretty off base.

I have to get over the victim mentality everyday when I wake up to back twinges, pain, buzzing numb legs and tinnitus ringing in my head. I have come to the conclusion that doctors prescribe Drugs and Surgery both of which are great if you are going to die but nothing much for quality of life relating to pain available. Physical therapy, losing weight, at least is a practical approach for some, but I’m having a hard time doing it.

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After my stroke, I was afloat on an ocean of pain for a long time. I still hurt a lot, so sick of it I could scream, and sometimes I do.

The stroke cost me my career, my hobbies, my independence, most of my friends (you'd think strokes were contagious), my peace of mind, etc. etc.

But one thing I don't do is compare myself to others. Or if I do, I also keep in mind those who'd gladly trade places with me. One the whole, I'm a lucky guy.

In my recovery, which is long, slow, frustrating, and painful, I stay focused on how far I have come, not how far I have to go.

Because, really, I have no alternative. If I don't fight to get better, I'll get worse. If nothing else, that is a lousy way to reward my wife, who makes countless sacrifices to help me. She does her utmost; I'd be the worst kind of ingrate if I didn't work equally hard.

I pray that you will heal, even bit by bit, to enable you to regain what you have lost. Stay strong!

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@kendallchase

When I tried to express my feelings to my Pain Management doctor (no quality of life, controlled by pain and weakness, etc) she said I should find Jesus and get over my victim complex.
Not sure what to think of this.

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in reply to @kendallchase I can totally relate. I had a tele-therapist for a few months last Spring, and she turned every one of our sessions into some kind of Bible study, and even went as far as sending me religious materials in the mail: some kind of olive oil mixture that she and her husband made in their garage that I could use to anoint myself. Suffice to say that my insurance company filed a grievance against her and the company she worked for.

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It does help to read and express our experiences here. Thank you for a protected space to share. I spend all of my days chasing one severe pain or another in my body. Chronic pain syndrome, Fibromyalgia, severe food allergies and seasonal allergies, celiac disease. Non diabetic neuropathy. Without my medicine regimen, I would have committed suicide many years ago. So I jump through the medical doctors' hoops in order to be treated. I have had chronic or recurring back pain since I was 17, after a bad car accident. Now I am 59. My face and body look like a younger woman's, but I have not had any interest in human friendship or dating in many years. I would be lost without God and my family. Boy, I just realized how self-pitying I am here. I am not always this way! Most days, I fight the pain and walk and stretch, and read uplifting materials. I hope all of you have a better day tomorrow!

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After my ranting, I want to share some things that helps me quite a bit. Lidocaine cream is available over the counter now!! It is the only way I can tolerate walking for more than 20 minutes or so. It is a temporary miracle! Also, I use a rolling pin, from my kitchen, to roll over and over my worst sore spots for that day. It releases the tight muscles.

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