Pain and Loss of Self Worth

I came across a comment from Michael J. Fox about acceptance and thought it would resonate in this conversation. For a while, acceptance was something I continously worked on but never felt quite there. I kept plugging away with positive self-talk, distraction, and seeking ways to build self-esteem. Sticking to the plan and maybe a little of simply surrendering to the ole "it is what it is" phrase, eventually got me there.

There is no time limit on acceptance. It may look different for each person, how and when they get there. The important part is to give yourself grace along the way and just keep trying. Wishing everyone a wonderful, hopeful day.

I loved reading this. Obviously not about your situation, but your outlook and thought process. I was a competitive rider (jumping horses), self employed accountant (trying to hold on to a handful of clients because I am no where near retirement age,). I had a very adverse reaction to the covid vaccines. I never imagined it possible. I can’t count how many specialists I’ve seen. I tested positive for RA and have inflammation all over. I did not respond to any conventional treatment. I can move about my cottage, but I haven’t been able to grocery shop for two years. I’m seeing another specialist on Friday. One who is acknowledging that people have had adverse reactions to the vaccines. I have been bed ridden for a month here and there. Definitely house bound which is so hard. I have good pain meds and an extremely high tolerance to pain, so this is new to me. I kept thinking that it would get better with time. It’s the opposite. I pushed myself until I couldn’t push anymore. I have wanted to give up because I’m never without pain and had to leave so much behind. My mantra for the moment is “this is temporary.” I’m reading some good books and sleeping a lot. I figure my body needs it. Thank you for sharing!! 💕

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

Hi Lisa,
Thank you for your comments to my post. I appreciate your kind words and am always humbled when told that something I’ve shared from my own experience has provided some value or comfort to your own situation.
I’ve already shared some of my 32+ years experience regarding severe debilitation and extremely challenging physical, mental, cognitive, emotional and spiritually challenging circumstances that I still continue to manage to this day.
I too thought that my disabilities would certainly improve, (they’d have to improve) over a sufficient amount of time.
When that expected result does not actually manifest…….after you’ve utilized every possible tool you gave in your extensive “personal tool box!” Where does one go from there?
Personally, I began to look, search and research areas about healing, energy, spirituality and other areas of valuable knowledge that I wasn’t very experienced with.
Given that zi didn’t know what else to do after spending hundreds of thousand of dollars of my own money trying experimental therapies and just about anything I had heard about ir researched without making any kind of measurable improvement…….I was completely stymied.
In the end, we can only do and give everything we can our best effort. There’s really nothing else one can do except their best, Now, your best effort might wax and wane from day to day or during different periods of your life sneaking journey. However, there is nothing available to do than your best.
With that it mind, it holds and presents a certain amount of peace of mind and grace for me accepting whatever it is or wherever I am as being in a more graceful manner.
The periods of time where my symptoms have the upper hand and regardless of what zi fo I can’t seem to change the course to a better more acceptable state of being etc. I just endure it all the best so can and hope that the exacerbation of all my symptoms will begin to retreat more sooner than later.
I am blessed to have sn incredibly loving and caring wife who provides me do much love and compassion that it fills my heart and soul with happiness and a fortune of companionship and partnership that couples rarely find or achieve.
I do have a wonderful life in spite of all the obvious that doesn’t work and nobody would choose.
I would be lying if I didn’t express the periods of time where I am totally and completely overwhelmed by it all. I fight through those times the best I can while surrendering to fact of whatever it is it currently has the best of me! I soldier on util the momentum finally comes around to give me the strength and fortitude I need to keep moving onwards, upwards and forward!
I send you all of my prayers and best wishes for an improved life and happier existence.
Love,
Phil
GODSPEED

Thank you, I found this very helpful tonight in the midst of a very hard day struggling with my situation.

Thank you….

You're welcome, Leigh, To share a little story that inspired me and I hope will inspire you. Yesterday, I went to my ophthalmologist for an annual corneal exam due to having an eye condition called Fuchs dystrophy. Fuchs caused the cells in my corneas to start dying off and disturb my vision at age 41, and required me to have cornea transplants and cataract surgeries in both eyes at age 43. Every year I go to make sure the cells are still healthy. Anyway, yesterday I walked into the office full of senior citizens and flashbacked to how I felt so out of place walking in there 13 years ago for the first time and finding a lobby full of...well, I'll just say it - "older" people. I felt too young to be there, was scared, in denial and angry. Fast forward, I have grown and worked on acceptance and mind set. I am blessed that the transplants have held up and my vision is good. My point in sharing the story is that when I walked into the jam-packed office of seniors and took a seat, across from me was a tiny little lady slouched, laying against a man that appeared to be her son. The man got up from his seat to complain that his 95-year-old mother had been waiting over an hour and she couldn't continue to do so. The little lady couldn't have weighed more than 80 90 pounds, was missing half of her teeth and was so frail I didn't think she had 1 oz of energy, but as I sat in my chair observing, I saw her lift one arm continuously for five reps followed by arm circles and then jaw stretches. Her son was so good to her he had a sweater draped over her because she was cold he kept rubbing her cheek and engaging with her until she finally started to speak and lo and behold she was funny! She had humor about the long wait. I was completely amazed that when her name was called, her son pulled her up, held on to her and they walked into the exam room. I wished her good luck and she said, "with what?" I said with eyes and she giggled. She was so inspirational to me in that moment and I realized that what's kept her going obviously was her tenacity her humor and probably her acceptance. I'm 53 now and have learned so much about myself through chronic pain and conditions and others both older and younger that have inspired me. We continue to grow through what we go through. We can never give up, we can only just keep trying to be the best versions of ourselves given the cards were dealt.. Sleep well and I hope you have a better day tomorrow.

😢 what a kind thing to take the time to write to me. I think we find inspirational people everywhere we go I find sometimes when I’m having a really bad day for me, I feel like God puts someone in my path that is struggling even more than I am to give me hope and strength.. Plus my heart always goes out to them. Thank you for your kindness.
I am really glad that you had the right doctors to help you with your eyes. It’s the same old and that you never know what someone is going through so always be kind..

Your description fits me to a T. Even though I know, intellectually that feeling worthless is not useful. I still think that way and feel that way sometimes. It’s OK to feel bad. Many people that are not experiencing this level of suffering, Have absolutely no idea about what they’re talking when they give suggestions. Usually they try to compare my pain to theirs, which is-unbelievably non-helpful. I take 70 mg a day of morphine and at night I vape a small amount of cannabis medically prescribed. I live in Canada, so I don’t actually need a prescription, but if I have to go to the hospital, they won’t let me use it unless I have a prescription. Even then it’s problematic sometimes. The only thing that saves me is that I have an active mind and I am interested in science and other topics. So I spend most of my time doing research on my illness, in quantum mechanics, other science, etc. I have always disliked television and now I find I’m watching hours of mind numbing shows because I am simply too tired to do anything else . These are the times when I feel particularly bad mentally. I so long to be productive again although it’s a complete impossibility that I just have to accept. My fine motor control is so bad I have to use voice to text now, so doing crafts is almost impossible and honestly nobody really wants to hear about your illness . This makes conversation with others difficult because my life is so constricted. Most people aren’t interested in science and they’re certainly not interested in my illness other than in a casual way. I have thought about teaching others but that requires that they have to come to my home and then I would have to make sure my house is tidy which is sometimes impossible and I also get very tired just talking for any length of time. I wish there was an easy solution to this problem, the reality is there is not. If anyone has any kind of practical solution to this problem, I would love to hear it. Perhaps now with zoom and the Internet, I might be able to do some thing online but I have no idea what or how to organize that if anybody has any ideas, let me know. Sending love and hugs to everyone out there who is in this situation. I pray that all suffering well end and new medicines and strategies will be developed to help people like us. 🥰

Sending prayers and understanding to you🙏🏻

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.