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