I've been thinking about writing on this topic for awhile. I'm not writing this so you will know "how tough I have it", but because people often ask me what a typical day is like. It's always hard to answer that b/c I'm never sure how much people really want to know. So in case you've ever wondered, here is a pretty detailed description of a day in the life of me:
Aaron's alarm goes off around 5:30. He gets up, after pushing "snooze" a few times, around 6. Before he leaves at 6:40, he puts the phone ear piece in my ear and makes sure the voice activation is turned on. I go back to sleep after he leaves (usually) until my caregiver Anna arrives around 8:30-9. When she gets here I call Aaron to let him know he can stop worrying. :)
Anna gives me my morning medicine and then begins the process of getting me up. I have an indwelling catheter so first she changes my "night bag" over to my "leg bag." The leg bag is strapped to my leg and periodically emptied throughout the day. She then pulls me up into a sitting position so she can get my sling around me. The sling is attached to my lift which lifts me out of bed so Anna can position me into my shower chair. After I'm in the shower chair we begin my bowel program. *Note: If you want to know more about this process in detail you can google it. * That's as far as I will go on the subject. After that's done we head to the shower. That's pretty self-explanatory. I shower like everyone else accept I sit down the whole time. :) After the shower Anna dries my hair, brushes my teeth, and occasionally I get makeup. That's usually an exciting day. (Just for the record: When Aaron gets me ready, he does the best job on my hair and makeup. The only thing he can't do is braid my hair.)
Anyway, after all that, Anna puts my shirt on and we do the sling/lift transfer thing back to bed so she can put my pants on. My pants have to be extra long, slightly stretchy, have no back pockets, and 4 sizes too big. It makes shopping really interesting. After my pants are on I do the sling/lift transfer thing to get into my normal wheelchair. Fitting me into my chair is the last step. We make sure I'm not sitting on any wrinkles in my pants or leaning against shirt wrinkles. My lap strap and chest strap are put on as well as my elbow stops and laterals. These keep me properly positioned throughout the day. And voila!! Just like that, I'm ready for my day... 2 1/2- 3 hours later.
By the time we're done it's time for lunch. Anna feeds me a simple lunch, gives me more medicine, and my day as a "normal" person begins. Depending on the day, my afternoons are usually busy. Two days a week I go to physical therapy. And Wednesdays I go to the church. I have different people who pick me up for those appointments.
Aaron gets home around 4-5. Evenings are nice. Pretty normal.
At bedtime Aaron gets me out of my chair with the sling/lift and puts me to bed. He positions me carefully and makes sure all the wrinkles are out of the sheets. He makes sure that my weight is distributed evenly so no single area of my body has extra pressure on it. This prevents pressure/bed/skin sores. That's why we are so obsessed with wrinkles. They can cause welts on your skin. Since I can't feel it we are very careful. Aaron then changes my leg bag to my night bag so he doesn't have to get up in the middle of the night to empty it. (The night bag is bigger.)
I sleep really well-especially since I started PT. And then we start all over again the next morning.
I guess that's about it. It's a challenge...and almost every day I get annoyed at the whole getting up process. It takes too much time, it's humiliating for lack of privacy, and it's totally out of my control. We are usually late for everything, which I hate, but it is what it is.
So all that to say...I love my life. I love my husband, my family, my friends. I'm thankful for all my equipment, my caregiver, and good health overall. And I'm thankful that I'm still created in God's image.
"For now and always, Christ will be exalted in my body."