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.

Hello,
Firstly, I hear what you are saying and I am totally empathetic and understand the scope of your current existence as it mirrors mine of over the past 32 years. I am 69 years old and recovering from Prostate Cancer surgery about a year ago.
However, my total disability(s) struck me when I was a very healthy, athletic, a successful businessman in a very happy marriage with lots of interests and passions. I caught a viral type of infection on December 30, 1990 and by August of 1991 I was mostly bedridden and home confined. Horribly exhausted with no strength or stamina to do anything. My cognitive dysfunction prevented me from reading. Additionally, I was in extreme pain 24 hours a day with migraine headaches, nausea, muscle and joint pain while feeling so weak I could barely walk to the bathroom and back to bed.
I won’t even go into the types of disease states I was eventually diagnosed with and everything associated with the facts that there are no treatments or cures for my illnesses and associated disabilities.
Thankfully, I had a very loving and dedicated wife who took care of me for the first 11 years before everything in totality took its toll on our marriage. I set her free because she was starting to become debilitated from all of the stress and challenges of caring for me. We still love each other to this day. We’ve both remarried.
I just wanted to provide you with some background before offering my comments regarding your situation and how you feel. It’s very unsettling as a human being to go from a state of total self reliance with the physical, mental, cognitive and emotional strength and abilities to do anything you want to barely being able to care for yourself or do much of anything at all. Reinventing oneself is difficult enough when you’re quite fit and able. It’s entirely a different and more challenging situation when you’re feeling very ill, weak and debilitated etc.
I was and remain a very strong emotional and stable person. However, at my worst, (including sleeping an average of 18-22 hours per day) while being mostly bedridden and home confined for over 20 years!!! I was challenged far beyond anything I thought was even possible to experience and still survive! (There were some very critical times when I almost didn’t).
I started to listen to a lot of books on tape, cd’s and audiobooks because I couldn’t read without exacerbating my symptoms. This was the most helpful thing I found to do and be a part of while struggling to find some kind of existence I could call life or living life.
Listening to hundreds of books on spirituality, (not religion), self improvement, cognitive therapy and many other topics on health, disability, illness, surviving, personal growth, the human body, healing alternatives and many others etc. We’re and remain a very stabilizing part of and if my life. Although I can do more now than when I was totally bedridden etc. I am not able to live anything close to a normal lifestyle or function on a normal basis.
I had to retire at age 36 due to the severity of my disabilities. I have not been able to return to any kind of work or gainful employment since then.
Fortunately, I had private disability income insurance that saved me financially until age 65 when the benefits expired.
Fortunately, I remarried over 10 years ago and assisted my very smart and capable wife who has a law degree and MBA get into
selling residential real estate. She is very successful and supports us financially. I have some Social Security and some other assets to contribute but I would be in a horrible financial position without my beautiful and adoring wife. We have been able to “ham & egg” it before my disability income ran out so she had enough time to get herself financially established in her real estate career. I have become a “house husband” and do everything I can to support her in her career by doing as much as possible around the house and taking care of our personal administrative needs so she doesn’t have to address those situations or conditions and can totally concentrate on her career.
It’s a far cry from all of the many talents and capabilities I used to thrive from and the successful business career I once had etc.
However, I have learned to be very thankful, grateful and appreciative for everything and anything I can do in my life with whatever abilities and strength I have to enjoy them.
I still spend far too much time in bed and around the house but I’ve been managing this lifestyle for over 32 years now and have come to accept that “IT IS WHAT IT IS!” Thankfully, I have a wonderful relationship, marriage and partnership with my incredible wife and she feels the same about me. Through my determination and desire to forge the best life I can with what I’ve got etc. I feel as complete as I can be. Would I prefer it to be much better including my substantially improved health conditions? Absolutely. However, I’ve done and tried just about everything possible to improve and recover yet my results are what they are or are not! I hope you have somebody or some family who can assist you. The biggest shift I made after being bedridden for the first 7 years of my disabled life was as follows. “Phil, this may be the best your health might ever be again for the rest of your life. Instead of waiting to feel better or recover to start living your life again. Your life is happening now so you should make the best of whatever it is and what you have!” I started to focus and appreciate the things I could do and thought less and less about all of the things I could no longer do or would never be able to do again.
Life can appear to be very, very unfair. However, regardless of what happens to us we are still the “Director” of our own movie!
Nobody can be 100% responsible for what happens to them in their life. However, we must absolutely be 100% responsible for how we manage the circumstances that occur in our life! You can come from a much more powerful and self actualized position and feel much more empowered managing your life this way versus some of the alternatives.
I would never be so bold as to tell anybody how they should feel, do or manage their life. I am only sharing some of the choices that have assisted and enabled me to enjoy a much better life than I otherwise would have.
I wish you all the best, love and happiness you can provide yourself with the life you have.
GODSPEED

REPLY
@philipsnowdon

Hello,
Firstly, I hear what you are saying and I am totally empathetic and understand the scope of your current existence as it mirrors mine of over the past 32 years. I am 69 years old and recovering from Prostate Cancer surgery about a year ago.
However, my total disability(s) struck me when I was a very healthy, athletic, a successful businessman in a very happy marriage with lots of interests and passions. I caught a viral type of infection on December 30, 1990 and by August of 1991 I was mostly bedridden and home confined. Horribly exhausted with no strength or stamina to do anything. My cognitive dysfunction prevented me from reading. Additionally, I was in extreme pain 24 hours a day with migraine headaches, nausea, muscle and joint pain while feeling so weak I could barely walk to the bathroom and back to bed.
I won’t even go into the types of disease states I was eventually diagnosed with and everything associated with the facts that there are no treatments or cures for my illnesses and associated disabilities.
Thankfully, I had a very loving and dedicated wife who took care of me for the first 11 years before everything in totality took its toll on our marriage. I set her free because she was starting to become debilitated from all of the stress and challenges of caring for me. We still love each other to this day. We’ve both remarried.
I just wanted to provide you with some background before offering my comments regarding your situation and how you feel. It’s very unsettling as a human being to go from a state of total self reliance with the physical, mental, cognitive and emotional strength and abilities to do anything you want to barely being able to care for yourself or do much of anything at all. Reinventing oneself is difficult enough when you’re quite fit and able. It’s entirely a different and more challenging situation when you’re feeling very ill, weak and debilitated etc.
I was and remain a very strong emotional and stable person. However, at my worst, (including sleeping an average of 18-22 hours per day) while being mostly bedridden and home confined for over 20 years!!! I was challenged far beyond anything I thought was even possible to experience and still survive! (There were some very critical times when I almost didn’t).
I started to listen to a lot of books on tape, cd’s and audiobooks because I couldn’t read without exacerbating my symptoms. This was the most helpful thing I found to do and be a part of while struggling to find some kind of existence I could call life or living life.
Listening to hundreds of books on spirituality, (not religion), self improvement, cognitive therapy and many other topics on health, disability, illness, surviving, personal growth, the human body, healing alternatives and many others etc. We’re and remain a very stabilizing part of and if my life. Although I can do more now than when I was totally bedridden etc. I am not able to live anything close to a normal lifestyle or function on a normal basis.
I had to retire at age 36 due to the severity of my disabilities. I have not been able to return to any kind of work or gainful employment since then.
Fortunately, I had private disability income insurance that saved me financially until age 65 when the benefits expired.
Fortunately, I remarried over 10 years ago and assisted my very smart and capable wife who has a law degree and MBA get into
selling residential real estate. She is very successful and supports us financially. I have some Social Security and some other assets to contribute but I would be in a horrible financial position without my beautiful and adoring wife. We have been able to “ham & egg” it before my disability income ran out so she had enough time to get herself financially established in her real estate career. I have become a “house husband” and do everything I can to support her in her career by doing as much as possible around the house and taking care of our personal administrative needs so she doesn’t have to address those situations or conditions and can totally concentrate on her career.
It’s a far cry from all of the many talents and capabilities I used to thrive from and the successful business career I once had etc.
However, I have learned to be very thankful, grateful and appreciative for everything and anything I can do in my life with whatever abilities and strength I have to enjoy them.
I still spend far too much time in bed and around the house but I’ve been managing this lifestyle for over 32 years now and have come to accept that “IT IS WHAT IT IS!” Thankfully, I have a wonderful relationship, marriage and partnership with my incredible wife and she feels the same about me. Through my determination and desire to forge the best life I can with what I’ve got etc. I feel as complete as I can be. Would I prefer it to be much better including my substantially improved health conditions? Absolutely. However, I’ve done and tried just about everything possible to improve and recover yet my results are what they are or are not! I hope you have somebody or some family who can assist you. The biggest shift I made after being bedridden for the first 7 years of my disabled life was as follows. “Phil, this may be the best your health might ever be again for the rest of your life. Instead of waiting to feel better or recover to start living your life again. Your life is happening now so you should make the best of whatever it is and what you have!” I started to focus and appreciate the things I could do and thought less and less about all of the things I could no longer do or would never be able to do again.
Life can appear to be very, very unfair. However, regardless of what happens to us we are still the “Director” of our own movie!
Nobody can be 100% responsible for what happens to them in their life. However, we must absolutely be 100% responsible for how we manage the circumstances that occur in our life! You can come from a much more powerful and self actualized position and feel much more empowered managing your life this way versus some of the alternatives.
I would never be so bold as to tell anybody how they should feel, do or manage their life. I am only sharing some of the choices that have assisted and enabled me to enjoy a much better life than I otherwise would have.
I wish you all the best, love and happiness you can provide yourself with the life you have.
GODSPEED

Jump to this post

That’s wonderful to read you’ve had such great experiences and supports (relationships, finance, and housing) in life while living with a chronic acquired condition 🌺

REPLY
@rwinney

Sure 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?

Jump to this post

No I don’t but not working now so I can travel. Thank you for the info. Prayers tonight, I have another nerve block scheduled for tomorrow

REPLY
@philipsnowdon

Hello,
Firstly, I hear what you are saying and I am totally empathetic and understand the scope of your current existence as it mirrors mine of over the past 32 years. I am 69 years old and recovering from Prostate Cancer surgery about a year ago.
However, my total disability(s) struck me when I was a very healthy, athletic, a successful businessman in a very happy marriage with lots of interests and passions. I caught a viral type of infection on December 30, 1990 and by August of 1991 I was mostly bedridden and home confined. Horribly exhausted with no strength or stamina to do anything. My cognitive dysfunction prevented me from reading. Additionally, I was in extreme pain 24 hours a day with migraine headaches, nausea, muscle and joint pain while feeling so weak I could barely walk to the bathroom and back to bed.
I won’t even go into the types of disease states I was eventually diagnosed with and everything associated with the facts that there are no treatments or cures for my illnesses and associated disabilities.
Thankfully, I had a very loving and dedicated wife who took care of me for the first 11 years before everything in totality took its toll on our marriage. I set her free because she was starting to become debilitated from all of the stress and challenges of caring for me. We still love each other to this day. We’ve both remarried.
I just wanted to provide you with some background before offering my comments regarding your situation and how you feel. It’s very unsettling as a human being to go from a state of total self reliance with the physical, mental, cognitive and emotional strength and abilities to do anything you want to barely being able to care for yourself or do much of anything at all. Reinventing oneself is difficult enough when you’re quite fit and able. It’s entirely a different and more challenging situation when you’re feeling very ill, weak and debilitated etc.
I was and remain a very strong emotional and stable person. However, at my worst, (including sleeping an average of 18-22 hours per day) while being mostly bedridden and home confined for over 20 years!!! I was challenged far beyond anything I thought was even possible to experience and still survive! (There were some very critical times when I almost didn’t).
I started to listen to a lot of books on tape, cd’s and audiobooks because I couldn’t read without exacerbating my symptoms. This was the most helpful thing I found to do and be a part of while struggling to find some kind of existence I could call life or living life.
Listening to hundreds of books on spirituality, (not religion), self improvement, cognitive therapy and many other topics on health, disability, illness, surviving, personal growth, the human body, healing alternatives and many others etc. We’re and remain a very stabilizing part of and if my life. Although I can do more now than when I was totally bedridden etc. I am not able to live anything close to a normal lifestyle or function on a normal basis.
I had to retire at age 36 due to the severity of my disabilities. I have not been able to return to any kind of work or gainful employment since then.
Fortunately, I had private disability income insurance that saved me financially until age 65 when the benefits expired.
Fortunately, I remarried over 10 years ago and assisted my very smart and capable wife who has a law degree and MBA get into
selling residential real estate. She is very successful and supports us financially. I have some Social Security and some other assets to contribute but I would be in a horrible financial position without my beautiful and adoring wife. We have been able to “ham & egg” it before my disability income ran out so she had enough time to get herself financially established in her real estate career. I have become a “house husband” and do everything I can to support her in her career by doing as much as possible around the house and taking care of our personal administrative needs so she doesn’t have to address those situations or conditions and can totally concentrate on her career.
It’s a far cry from all of the many talents and capabilities I used to thrive from and the successful business career I once had etc.
However, I have learned to be very thankful, grateful and appreciative for everything and anything I can do in my life with whatever abilities and strength I have to enjoy them.
I still spend far too much time in bed and around the house but I’ve been managing this lifestyle for over 32 years now and have come to accept that “IT IS WHAT IT IS!” Thankfully, I have a wonderful relationship, marriage and partnership with my incredible wife and she feels the same about me. Through my determination and desire to forge the best life I can with what I’ve got etc. I feel as complete as I can be. Would I prefer it to be much better including my substantially improved health conditions? Absolutely. However, I’ve done and tried just about everything possible to improve and recover yet my results are what they are or are not! I hope you have somebody or some family who can assist you. The biggest shift I made after being bedridden for the first 7 years of my disabled life was as follows. “Phil, this may be the best your health might ever be again for the rest of your life. Instead of waiting to feel better or recover to start living your life again. Your life is happening now so you should make the best of whatever it is and what you have!” I started to focus and appreciate the things I could do and thought less and less about all of the things I could no longer do or would never be able to do again.
Life can appear to be very, very unfair. However, regardless of what happens to us we are still the “Director” of our own movie!
Nobody can be 100% responsible for what happens to them in their life. However, we must absolutely be 100% responsible for how we manage the circumstances that occur in our life! You can come from a much more powerful and self actualized position and feel much more empowered managing your life this way versus some of the alternatives.
I would never be so bold as to tell anybody how they should feel, do or manage their life. I am only sharing some of the choices that have assisted and enabled me to enjoy a much better life than I otherwise would have.
I wish you all the best, love and happiness you can provide yourself with the life you have.
GODSPEED

Jump to this post

I loved your positivity statement of not feeling responsible for what happens in your life but to be responsible for how we manage the circumstances that occur in our lives.

REPLY
@philipsnowdon

Hello,
Firstly, I hear what you are saying and I am totally empathetic and understand the scope of your current existence as it mirrors mine of over the past 32 years. I am 69 years old and recovering from Prostate Cancer surgery about a year ago.
However, my total disability(s) struck me when I was a very healthy, athletic, a successful businessman in a very happy marriage with lots of interests and passions. I caught a viral type of infection on December 30, 1990 and by August of 1991 I was mostly bedridden and home confined. Horribly exhausted with no strength or stamina to do anything. My cognitive dysfunction prevented me from reading. Additionally, I was in extreme pain 24 hours a day with migraine headaches, nausea, muscle and joint pain while feeling so weak I could barely walk to the bathroom and back to bed.
I won’t even go into the types of disease states I was eventually diagnosed with and everything associated with the facts that there are no treatments or cures for my illnesses and associated disabilities.
Thankfully, I had a very loving and dedicated wife who took care of me for the first 11 years before everything in totality took its toll on our marriage. I set her free because she was starting to become debilitated from all of the stress and challenges of caring for me. We still love each other to this day. We’ve both remarried.
I just wanted to provide you with some background before offering my comments regarding your situation and how you feel. It’s very unsettling as a human being to go from a state of total self reliance with the physical, mental, cognitive and emotional strength and abilities to do anything you want to barely being able to care for yourself or do much of anything at all. Reinventing oneself is difficult enough when you’re quite fit and able. It’s entirely a different and more challenging situation when you’re feeling very ill, weak and debilitated etc.
I was and remain a very strong emotional and stable person. However, at my worst, (including sleeping an average of 18-22 hours per day) while being mostly bedridden and home confined for over 20 years!!! I was challenged far beyond anything I thought was even possible to experience and still survive! (There were some very critical times when I almost didn’t).
I started to listen to a lot of books on tape, cd’s and audiobooks because I couldn’t read without exacerbating my symptoms. This was the most helpful thing I found to do and be a part of while struggling to find some kind of existence I could call life or living life.
Listening to hundreds of books on spirituality, (not religion), self improvement, cognitive therapy and many other topics on health, disability, illness, surviving, personal growth, the human body, healing alternatives and many others etc. We’re and remain a very stabilizing part of and if my life. Although I can do more now than when I was totally bedridden etc. I am not able to live anything close to a normal lifestyle or function on a normal basis.
I had to retire at age 36 due to the severity of my disabilities. I have not been able to return to any kind of work or gainful employment since then.
Fortunately, I had private disability income insurance that saved me financially until age 65 when the benefits expired.
Fortunately, I remarried over 10 years ago and assisted my very smart and capable wife who has a law degree and MBA get into
selling residential real estate. She is very successful and supports us financially. I have some Social Security and some other assets to contribute but I would be in a horrible financial position without my beautiful and adoring wife. We have been able to “ham & egg” it before my disability income ran out so she had enough time to get herself financially established in her real estate career. I have become a “house husband” and do everything I can to support her in her career by doing as much as possible around the house and taking care of our personal administrative needs so she doesn’t have to address those situations or conditions and can totally concentrate on her career.
It’s a far cry from all of the many talents and capabilities I used to thrive from and the successful business career I once had etc.
However, I have learned to be very thankful, grateful and appreciative for everything and anything I can do in my life with whatever abilities and strength I have to enjoy them.
I still spend far too much time in bed and around the house but I’ve been managing this lifestyle for over 32 years now and have come to accept that “IT IS WHAT IT IS!” Thankfully, I have a wonderful relationship, marriage and partnership with my incredible wife and she feels the same about me. Through my determination and desire to forge the best life I can with what I’ve got etc. I feel as complete as I can be. Would I prefer it to be much better including my substantially improved health conditions? Absolutely. However, I’ve done and tried just about everything possible to improve and recover yet my results are what they are or are not! I hope you have somebody or some family who can assist you. The biggest shift I made after being bedridden for the first 7 years of my disabled life was as follows. “Phil, this may be the best your health might ever be again for the rest of your life. Instead of waiting to feel better or recover to start living your life again. Your life is happening now so you should make the best of whatever it is and what you have!” I started to focus and appreciate the things I could do and thought less and less about all of the things I could no longer do or would never be able to do again.
Life can appear to be very, very unfair. However, regardless of what happens to us we are still the “Director” of our own movie!
Nobody can be 100% responsible for what happens to them in their life. However, we must absolutely be 100% responsible for how we manage the circumstances that occur in our life! You can come from a much more powerful and self actualized position and feel much more empowered managing your life this way versus some of the alternatives.
I would never be so bold as to tell anybody how they should feel, do or manage their life. I am only sharing some of the choices that have assisted and enabled me to enjoy a much better life than I otherwise would have.
I wish you all the best, love and happiness you can provide yourself with the life you have.
GODSPEED

Jump to this post

You don’t know how important your message is for me today. It’s been 20 years since my problems started and bc it took 16 years for a diagnosis, I have nerve damage that only allows me a few hours of energy a day. Thank you for uplifting me and giving me hope for the future.

REPLY
@darby413

I loved your positivity statement of not feeling responsible for what happens in your life but to be responsible for how we manage the circumstances that occur in our lives.

Jump to this post

REPLY

Your thoughts and expressions are similiar to mine.

REPLY
@rwinney

Sure 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?

Jump to this post

This podcast was enlightening and thought-provoking. however, I'm skeptical as to what degree behavioral therapy can truly reduce pain. Can it take you from a pain score of 8 to a pain scale of 2? Can it truly significantly reduce the chronic stabbing back pain and burning of neuropathy that accompanies a spinal injury?
Are there patient testimonials that can be shared?
Orthopedic surgeons strongly recommended back surgery for me and I went forward with it. When the pain only worsened afterwards, they recommended a spinal cord stimulator implant. I agreed to go forward with it. That didn't help either.
I'm at the point where I think the best thing I can do now is to accept the fact that I have a chronic condition and do what I know gives me some relief.
I'm worn out from seeking solutions that, in the end, have not helped.
Your comments would be appreciated~

REPLY

I have a friend age 75 who uses a motorized scooter, she goes everywhere, out to lunch & dinner, shopping, senior center to play card games and even camps!

Medicare bought hers, it collapses so she loads it in her van by herself.

Gave her back her freedom!

Sending support your way!

REPLY
@philipsnowdon

Hello,
Firstly, I hear what you are saying and I am totally empathetic and understand the scope of your current existence as it mirrors mine of over the past 32 years. I am 69 years old and recovering from Prostate Cancer surgery about a year ago.
However, my total disability(s) struck me when I was a very healthy, athletic, a successful businessman in a very happy marriage with lots of interests and passions. I caught a viral type of infection on December 30, 1990 and by August of 1991 I was mostly bedridden and home confined. Horribly exhausted with no strength or stamina to do anything. My cognitive dysfunction prevented me from reading. Additionally, I was in extreme pain 24 hours a day with migraine headaches, nausea, muscle and joint pain while feeling so weak I could barely walk to the bathroom and back to bed.
I won’t even go into the types of disease states I was eventually diagnosed with and everything associated with the facts that there are no treatments or cures for my illnesses and associated disabilities.
Thankfully, I had a very loving and dedicated wife who took care of me for the first 11 years before everything in totality took its toll on our marriage. I set her free because she was starting to become debilitated from all of the stress and challenges of caring for me. We still love each other to this day. We’ve both remarried.
I just wanted to provide you with some background before offering my comments regarding your situation and how you feel. It’s very unsettling as a human being to go from a state of total self reliance with the physical, mental, cognitive and emotional strength and abilities to do anything you want to barely being able to care for yourself or do much of anything at all. Reinventing oneself is difficult enough when you’re quite fit and able. It’s entirely a different and more challenging situation when you’re feeling very ill, weak and debilitated etc.
I was and remain a very strong emotional and stable person. However, at my worst, (including sleeping an average of 18-22 hours per day) while being mostly bedridden and home confined for over 20 years!!! I was challenged far beyond anything I thought was even possible to experience and still survive! (There were some very critical times when I almost didn’t).
I started to listen to a lot of books on tape, cd’s and audiobooks because I couldn’t read without exacerbating my symptoms. This was the most helpful thing I found to do and be a part of while struggling to find some kind of existence I could call life or living life.
Listening to hundreds of books on spirituality, (not religion), self improvement, cognitive therapy and many other topics on health, disability, illness, surviving, personal growth, the human body, healing alternatives and many others etc. We’re and remain a very stabilizing part of and if my life. Although I can do more now than when I was totally bedridden etc. I am not able to live anything close to a normal lifestyle or function on a normal basis.
I had to retire at age 36 due to the severity of my disabilities. I have not been able to return to any kind of work or gainful employment since then.
Fortunately, I had private disability income insurance that saved me financially until age 65 when the benefits expired.
Fortunately, I remarried over 10 years ago and assisted my very smart and capable wife who has a law degree and MBA get into
selling residential real estate. She is very successful and supports us financially. I have some Social Security and some other assets to contribute but I would be in a horrible financial position without my beautiful and adoring wife. We have been able to “ham & egg” it before my disability income ran out so she had enough time to get herself financially established in her real estate career. I have become a “house husband” and do everything I can to support her in her career by doing as much as possible around the house and taking care of our personal administrative needs so she doesn’t have to address those situations or conditions and can totally concentrate on her career.
It’s a far cry from all of the many talents and capabilities I used to thrive from and the successful business career I once had etc.
However, I have learned to be very thankful, grateful and appreciative for everything and anything I can do in my life with whatever abilities and strength I have to enjoy them.
I still spend far too much time in bed and around the house but I’ve been managing this lifestyle for over 32 years now and have come to accept that “IT IS WHAT IT IS!” Thankfully, I have a wonderful relationship, marriage and partnership with my incredible wife and she feels the same about me. Through my determination and desire to forge the best life I can with what I’ve got etc. I feel as complete as I can be. Would I prefer it to be much better including my substantially improved health conditions? Absolutely. However, I’ve done and tried just about everything possible to improve and recover yet my results are what they are or are not! I hope you have somebody or some family who can assist you. The biggest shift I made after being bedridden for the first 7 years of my disabled life was as follows. “Phil, this may be the best your health might ever be again for the rest of your life. Instead of waiting to feel better or recover to start living your life again. Your life is happening now so you should make the best of whatever it is and what you have!” I started to focus and appreciate the things I could do and thought less and less about all of the things I could no longer do or would never be able to do again.
Life can appear to be very, very unfair. However, regardless of what happens to us we are still the “Director” of our own movie!
Nobody can be 100% responsible for what happens to them in their life. However, we must absolutely be 100% responsible for how we manage the circumstances that occur in our life! You can come from a much more powerful and self actualized position and feel much more empowered managing your life this way versus some of the alternatives.
I would never be so bold as to tell anybody how they should feel, do or manage their life. I am only sharing some of the choices that have assisted and enabled me to enjoy a much better life than I otherwise would have.
I wish you all the best, love and happiness you can provide yourself with the life you have.
GODSPEED

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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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