Yesterday, I ended my post with a question about whether it would be better to remand myself to a wheelchair permanently as to prolong my potential involvement in the universe.
My wife offered a simple answer: If I leave the house, I’m in a wheelchair.
My issues go critical in a few steps. My body routinely goes from good to nothing within minutes. The time used to be 20-30 minutes. Now, it’s minutes.
We have learned one the keys to quality of life is management of this disorder. It doesn’t just mean taking the 23 prescriptions that today 45-55 (depending on the quality of my body) meds per day I take around the clock. But, management of physical activities.
We have made numerous accommodations around the house for this disorder. However, those of you that know me well, know that I don’t always do what I should. With this disorder, I pay dearly when I do that. I have finally started listening to my wife, mother-in-law, daughters and pups. When they tell me I had enough, I quit. I don’t listen to everything they tell me, but when they say I have to quit, I’m learning I REALLY need to listen. Astute outside observers notice physical changes in my appearance, voice and motions along with changes in my speech patterns when things start to tank. I don’t realize it myself.
My wife even suggested “Don’t Let Me Get Me” by P!nk to describe my stupidity. P!nk sings “I’m a hazard to myself.” Yep, that’s me. I think I would do myself a lot of good if I started listening to my loved ones. I truly believe they know me better than I know myself.
Jay C. “Jazzy_J” Theriot