I'm slipping into a deep dark funk and just need to express how I feel.
I have ALS and I'm dying. The typical prognosis is 2 to 5 years from diagnosis and I'm approaching my one year anniversary so I'm down to 1 to 4 years left.
That sounds like a prison sentence and in many ways it is since I'm confined to a body that doesn't work. I've just about lost use of my arms and my legs are starting to go.
They say that you typically don't have pain but I've come to know there is nothing typical with this disease.
My shoulders hurt every morning from laying on the during the night and my right leg is in constant pain.
I thought retirement was going to be a wonderful time filled with fishing, hunting, golf and travel. I can't leave the house unless someone takes me and I couldn't swing a golf club, cast a fishing rod or hold a gun if my life depended on it.
So my retirement is sitting in the house watching television with an occasional trip out.
I have so much time on my hands with nothing to do and the inability to do anything with my hands.
I have ALS and I'm dying. The typical prognosis is 2 to 5 years from diagnosis and I'm approaching my one year anniversary so I'm down to 1 to 4 years left.
That sounds like a prison sentence and in many ways it is since I'm confined to a body that doesn't work. I've just about lost use of my arms and my legs are starting to go.
They say that you typically don't have pain but I've come to know there is nothing typical with this disease.
My shoulders hurt every morning from laying on the during the night and my right leg is in constant pain.
I thought retirement was going to be a wonderful time filled with fishing, hunting, golf and travel. I can't leave the house unless someone takes me and I couldn't swing a golf club, cast a fishing rod or hold a gun if my life depended on it.
So my retirement is sitting in the house watching television with an occasional trip out.
I have so much time on my hands with nothing to do and the inability to do anything with my hands.
Thank God I'm not alone on this journey into Hell.
Ed, I am thinking about you (and Lynn) as you face this difficult journey. I know that it is not what you envisioned. I am glad that you have Lynn to help you as she seems to be a wonderful, kind and practical person. You are fortunate in that respect. We think about you often at work and miss you a lot. Elaine.
ReplyDeleteI hit the jackpot when I found Lynn. She is definitely the silver lining to this cloud. I think of everyone at VSP often. We are even thinking about making a trip to the east coast and making a stop in Richmond to see you guys.
DeleteWould love to see you (and meet Lynn) if you make it to Richmond. We really miss your input on CCH.
DeleteEd, this is Nadine (Hope McCloud is my internet alias). Miss you terribly. Can you access email, or talk on the phone? You don't know how many times I wish I could bounce an idea off you. Praying for you and Lynn.
ReplyDeleteSent you an email, feel free to contact me anytime. Miss you too and look forward to hearing from you.
DeleteThinking of you both. There are no words, but I am glad you are loved.
ReplyDelete