Hi Jan You are not alone!
I'm sorry for what you are going through, sounds a lot like me. I had a back injury in a plane accident over 18 years ago, I had just had back surgery the year before to repair ruptured discs in my lower back, was doing well until the plane accident. Blew out the discs at L4,L5, S1, no doctor would operate again because the disc material was wrapped around my nerves. The were afraid they would paralyze me. So for 18 years I have had chronic low back pain, but I was only in the wheelchair when the pain was too bad to walk.
Then in May 2006 had DX of ALS lower MND. My legs have lost almost all function now, my arms are losing their strength, I have trouble swallowing, and I have lost lung capacity. I have a powered wheelchair now and that helps a lot.
I just turned 60 September 22, and I have lived a blessed life. I try to focus on LIVING each and every day to the max. To enjoy the time I have left instead of focusing on the fact that I am dying. I spent a few weeks feeling sorry for myself and complaining to God about my circumstances and then I made a decision I did not like living like that and I CHOSE to focus on the positive. It's a personal decision each of us has to come to face and I hope you chose the high road.
I look at the blessings in my life and I am thankful for each and every day I have left to spend time with my family and friends. Sure I am still in pain, sure I can't do a lot of the things I use to love to do, but there are other things I have started to explore that encourage me and give me excitement to live.
The last thing I want to share with you is without my faith in God and that I believe there is a better place that I am going to after I die, where there will be no pain or suffering, I don't think I could have this attitude. I believe heaven is a real place and some of my relatives are there waiting to greet me at the gate, and later I will be reunited with my loved ones that are still here on this earth. That gives me great comfort and peace about living with ALS. I hope you find that place of peace in the midst of all this terrible disease.
Please remember you are not alone. All of us on this forum share the same feelings at one time or another. Feel free to vent your frustrations or questions, and share your feelings. We are here for you and we care.