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.

@philipsnowdon

Hi Patty,
Thank you so much for your kind words. I am always trying to support and be of assistance to all my fellow cancer patients whenever and however I can. I am happy to hear that you found some benefit from one of my posts.
Thanks again and best wishes for you and your life journey.
Phil

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Your post gave that nudge to start my emotional reset. I was getting discouraged and felt that my medical team had just lost their engagement in my case with too many errors occurring left me with my hands up in the air! Now I have become more motivated to take charge, make some progress. I had forgotten that God created everyone’s life journey, there are reasons why, and to believe that my faith will lead the way. I literally feel God inside of me coaching me, leading me to new adventures and journeys and will always have his arms around me. The biggest challenge is to keep my mind focused and find a way to help my son with this difficult journey. He is almost 27, has really no close friends nearby, has Aspergers and is feeling overwhelmed with the future I recently moved my elderly mother and stepfather here and they also have been quite the challenge but they are starting to grow emotionally as I’ve been very honest with them. My son wants to be informed about my progress but at times when the news is not what we all have wanted and have needed to readjust things my son is finding that hard. I am his only support and have always been his “ stability “ and he feels that is being ripped away. I know God will lead me to a better future. I feel that my internal happiness is what makes me “shine” which then projects to everything and everyone around me! Then the calm sets in, motivation kicks in, energy levels go up and the Super Hero comes out full Cale and all! I believe if you love life, love yourself which has become easier over the past 3 years, and love God the rest just falls into place.
Thank you again for that nudge!!

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@pattyb317

Your post gave that nudge to start my emotional reset. I was getting discouraged and felt that my medical team had just lost their engagement in my case with too many errors occurring left me with my hands up in the air! Now I have become more motivated to take charge, make some progress. I had forgotten that God created everyone’s life journey, there are reasons why, and to believe that my faith will lead the way. I literally feel God inside of me coaching me, leading me to new adventures and journeys and will always have his arms around me. The biggest challenge is to keep my mind focused and find a way to help my son with this difficult journey. He is almost 27, has really no close friends nearby, has Aspergers and is feeling overwhelmed with the future I recently moved my elderly mother and stepfather here and they also have been quite the challenge but they are starting to grow emotionally as I’ve been very honest with them. My son wants to be informed about my progress but at times when the news is not what we all have wanted and have needed to readjust things my son is finding that hard. I am his only support and have always been his “ stability “ and he feels that is being ripped away. I know God will lead me to a better future. I feel that my internal happiness is what makes me “shine” which then projects to everything and everyone around me! Then the calm sets in, motivation kicks in, energy levels go up and the Super Hero comes out full Cale and all! I believe if you love life, love yourself which has become easier over the past 3 years, and love God the rest just falls into place.
Thank you again for that nudge!!

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Wow Patty,
I am feeling a bit overwhelmed by your comments regarding the “nudge” to hit the rest button which has helped to inspire you. I am truly humbled and thankful that anything I’ve had to share with you and others has made some kind of positive difference in their life’s journey .
Reading your words have inspired me as well. I too continue to experience great struggle at times in my life circumstances and wonder how I can make the best of everything in the present and my future.
Thank you again for sharing your “nudge” with me and everybody else who will be able to read your post.
You certainly have some additional family care, love direction and strength that they are looking to you to provide them with.
It sounds like you have embraced that role and in addition to managing all of your own personal challenges, you have opened your heart, mind and soul to be the leader in this endeavor.
You my friend are the inspiration in this life story and I know that your vulnerability and words of encouragement will “nudge” others as I’ve had the opportunity and privilege to shine some light on your universe.
Best of wishes and goodwill in your faith in GOD to help lead the way..
GODSPEED

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in response to @scottrl You could not have said this more succinctly. Sometimes I walk around my apartment in such pain that I say to myself, "I wonder if this is what death feels like?" When I am feeling particularly horrible, I usually end up going online and submitting a compliment to someone at the doctor's office who was especially kind to me, and this always makes be feel better. Earlier this morning, when I was arranging a ride to the doctor on Thursday, I asked to be connected to the customer service department, where I submitted four compliments about the past several drivers I have had, as well as those women who took my reservations in the past and also for me today. I have a picture on my refrigerator with a photo of a town that got blown to pieces by a hurricane, and I put a sticker on it that says, "This is a bad day." This is not meant to minimize anyone's personal experience at all, but this is what works for me: keeping things in perspective. Last night my upstairs neighbor stopped me on my way to the store and said the following: "You were spraying something that smelled like spray paint on Sunday, and it bothers my allergies You have 5 days a week to do your art work, I only have two days off each week. Can you please do your spraying during the week?" My first thought was, "what do these people do when something really bad happens, such as losing a family member to a gunshot, or a burning house?" Of course, I was not spray painting, but rather using spray glue to adhere paper to cardstock, which took a total of 5 minutes. Last night it was all I could do not to take the can of glue and spray it upwards toward her apartment. Instead, I sent her a text message that I had been sick all week, as an artist I work when the moment strikes me, and if the smell bothers her I suggested she close her door until the odor dissipated. Suffice to say she will not be getting one of my beautiful handmade cards, as the glue might make her sick.
During my personal journey with pain, I understand how debilitating pain can be, not just on one's body but also their psyche. Sometimes I think, "maybe the next pill will help." Sometimes it does not, but this does not deter me from making a difference in someone else's day, which I do on a daily basis.

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@frances007

in response to @scottrl You could not have said this more succinctly. Sometimes I walk around my apartment in such pain that I say to myself, "I wonder if this is what death feels like?" When I am feeling particularly horrible, I usually end up going online and submitting a compliment to someone at the doctor's office who was especially kind to me, and this always makes be feel better. Earlier this morning, when I was arranging a ride to the doctor on Thursday, I asked to be connected to the customer service department, where I submitted four compliments about the past several drivers I have had, as well as those women who took my reservations in the past and also for me today. I have a picture on my refrigerator with a photo of a town that got blown to pieces by a hurricane, and I put a sticker on it that says, "This is a bad day." This is not meant to minimize anyone's personal experience at all, but this is what works for me: keeping things in perspective. Last night my upstairs neighbor stopped me on my way to the store and said the following: "You were spraying something that smelled like spray paint on Sunday, and it bothers my allergies You have 5 days a week to do your art work, I only have two days off each week. Can you please do your spraying during the week?" My first thought was, "what do these people do when something really bad happens, such as losing a family member to a gunshot, or a burning house?" Of course, I was not spray painting, but rather using spray glue to adhere paper to cardstock, which took a total of 5 minutes. Last night it was all I could do not to take the can of glue and spray it upwards toward her apartment. Instead, I sent her a text message that I had been sick all week, as an artist I work when the moment strikes me, and if the smell bothers her I suggested she close her door until the odor dissipated. Suffice to say she will not be getting one of my beautiful handmade cards, as the glue might make her sick.
During my personal journey with pain, I understand how debilitating pain can be, not just on one's body but also their psyche. Sometimes I think, "maybe the next pill will help." Sometimes it does not, but this does not deter me from making a difference in someone else's day, which I do on a daily basis.

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Congratulations on not seeking revenge! Hard to resist, I know.

Tell you what though. I bet your neighbor is quite lonely and bitter. Any wonder why?

(I have a saying: there is such a thing as "Asking for it".)

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@frances007

in response to @scottrl You could not have said this more succinctly. Sometimes I walk around my apartment in such pain that I say to myself, "I wonder if this is what death feels like?" When I am feeling particularly horrible, I usually end up going online and submitting a compliment to someone at the doctor's office who was especially kind to me, and this always makes be feel better. Earlier this morning, when I was arranging a ride to the doctor on Thursday, I asked to be connected to the customer service department, where I submitted four compliments about the past several drivers I have had, as well as those women who took my reservations in the past and also for me today. I have a picture on my refrigerator with a photo of a town that got blown to pieces by a hurricane, and I put a sticker on it that says, "This is a bad day." This is not meant to minimize anyone's personal experience at all, but this is what works for me: keeping things in perspective. Last night my upstairs neighbor stopped me on my way to the store and said the following: "You were spraying something that smelled like spray paint on Sunday, and it bothers my allergies You have 5 days a week to do your art work, I only have two days off each week. Can you please do your spraying during the week?" My first thought was, "what do these people do when something really bad happens, such as losing a family member to a gunshot, or a burning house?" Of course, I was not spray painting, but rather using spray glue to adhere paper to cardstock, which took a total of 5 minutes. Last night it was all I could do not to take the can of glue and spray it upwards toward her apartment. Instead, I sent her a text message that I had been sick all week, as an artist I work when the moment strikes me, and if the smell bothers her I suggested she close her door until the odor dissipated. Suffice to say she will not be getting one of my beautiful handmade cards, as the glue might make her sick.
During my personal journey with pain, I understand how debilitating pain can be, not just on one's body but also their psyche. Sometimes I think, "maybe the next pill will help." Sometimes it does not, but this does not deter me from making a difference in someone else's day, which I do on a daily basis.

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Hi Frances,
I completely understand and empathize with your plight and challenges. I’ve observed that the only people who really understand the effects from accute pain or chronic accute pain are those that have it.
I realize that most people don’t have any clue about and a good portion of those don’t make the effort or really care to gain a better understanding.
As difficult as it can be at times, especially in the midst of dealing with severe and or intractable pain etc. Is to find the emotional and spiritual strength to forgive the person who doesn’t seem to understand or exhibit any kind of empathy at all for their lack of experience on the matter.
I find that it also supports my overall wellbeing and peace of mind.
Best wishes on your personal journey and I hope that your levels of pain reduce, subside and with the assistance of the universe, disappear.
GODSPEED

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@philipsnowdon

Hi Frances,
I completely understand and empathize with your plight and challenges. I’ve observed that the only people who really understand the effects from accute pain or chronic accute pain are those that have it.
I realize that most people don’t have any clue about and a good portion of those don’t make the effort or really care to gain a better understanding.
As difficult as it can be at times, especially in the midst of dealing with severe and or intractable pain etc. Is to find the emotional and spiritual strength to forgive the person who doesn’t seem to understand or exhibit any kind of empathy at all for their lack of experience on the matter.
I find that it also supports my overall wellbeing and peace of mind.
Best wishes on your personal journey and I hope that your levels of pain reduce, subside and with the assistance of the universe, disappear.
GODSPEED

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in reply to @philipsnowdon Yes. I did leave out one very important thought I had after my neighbor complained, and that was that I wanted to get out my power saw and aim it into the air just because. I know this sounds akin to "Texas Chainsaw Massacre" but I have had so many complaints from my neighbors that have only happened since I became "sick." Before I became "chronically ill" people were so gracious and kind to me, however once I began displaying signs of an illness, everything shifted. I am now waiting for someone to ask me again what is wrong with me so I can say: "I am not going to dignify that with an answer."

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labgirl, everyone travels their own journey in life. Alone. Yes, paths may intercept but ultimately we are all on our own road in life. This is yours. And I understand because yours is very similar to mine. Most people do not understand chronic pain. Why? Because they don't experience it. One must be in such shoes to truly get it.
Most of your time is sitting. I understand. How is your spiritual life? Now is the time to "go inward". Your journey is now "mostly" spiritual. I can write many things you can do to achieve an inner peace but you certainly sound like an intelligent woman who can figure this out. But some other thoughts: You can still volunteer from home simply sitting. Do a search, there are opportunities out there. Can you have a physical therapist come to your home for a personalized exercise program? You are disabled, options are available for you! How about a home massage therapist? How about a home health & wellness coach also? What about chair yoga? I know for a fact they make home visits. But how about this? Contact a local nursing home to make visits to their residents who are completely alone in this world. How? Their van can pick you up, get yourself a wheelchair and off you go!
You can wheel yourself around the nursing home dropping in on folks who would love to talk to you. Stay as short or long as you like and the van takes you back home. You are entitled to have a ramp installed at home in order to leave your home in a wheelchair. Contact your local aging agency and see what can be offered to you.
Reach out, reach out! Think outside the box. You are not alone. Plenty of people are in your shoes and they do have a life! Not the one they imagined for themselves at age 70 but a "life" nevertheless. Get connected with folks like you on line...support so crucial for you! Don't give up hope. Don't despair. Don't compare your life to someone else's...it's a lose-lose situation. These are the cards you have been dealt. You must deal. If one is alive - one must live to the best of their ability. Don't be dead while you are still living. We all only go around once. And if necessary, contact a mental health professional if you need medication assistance to get you out of your "funk". There is nothing wrong with that! Every doctor today does on-line visits. I truly wish you the very best in life!
Don't waste it!

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Thank you for taking the time to respond and sharing thoughts and ideas. I know that I have blessings beyond compare and yet I still struggle to accept the physical limitations I have.
I ask God (and myself) why I can't handle this better and there is no answer. I'll continue to try, though.

I will follow up later with a
posting about the incredible strength of my Mother, who was diagnosed with retinitis pigmentosa and nerve deafness at about the age of 45. She is my inspiration, but I am so very far away from achieving her strength.

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