“So what did you do today?”
“I showered.” As if it were the greatest achievement, no sarcasm tone but more, “Yes, truth. Believe it.” Because on days like yesterday, this was my greatest achievement—not so much the shower, but the aftermath of getting ready. I now plan shower days according to what may be going on during the week and weekend, because it can be a full hour of my mid-morning. Yesterday it took even longer…I just could not coordinate. Huffing and puffing, I finally finish feeling as if I just came from the gym. I am attempting to get a pair of socks from their bin on the closet shelf; of course missing aim putting them on my walker, Mom comes in and lends a hand. “It was more fun dressing your Barbies for hours as a kid,” I say, while getting help with my shoes. Some days are just like this.
At my doctor appointment, we had just finished going over my MRI results when my doctor asked a simple question: “How are you doing with all this?” (We discussed in part my physical and mental aspects. I shared more with him later as we talked final choice decisions.) My doctor genuinely wanted to know how I was handling the changes. I told him everything that came to mind of importance. Most dealt with the issue of running out of things I can do on my own.
“Sure, I blog and still paint (but need help there too), I tell him,”but I get frustrated that I can’t do more. Obviously at the time, keeping my own hygiene never crossed my mind, “But I need to be doing something, while I still can.” That’s the thing about this disease, there is no pattern or warning—change just begins. Some changes, like reference to my hands or intestines, are slower progression; even my hearing loss was such. Yet others, like my eyes are the opposite. And even just since Valentine’s weekend, my left leg does not want to walk.
During the appointment, we came up with a list of things to help me—and the family, especially Mom as she is my primary help. One need on the list was getting more help from outside programs. I already have a home health care worker coming in twice a week, while Mom has things going on outside of the house. I used to be fine spending an hour or two by myself, if needed. After the way this last week has gone, that is no longer the case—and I know this.
I am not writing this as fact, but I know the beginning stages of bigger changes. My left leg has been fully numb since my first blood clot. It just feels heavy and tight around the knee. My hip also pops on that side. My legs used to be the strongest of my body, until full walker dependence. Then add current eye problems and weaker grip in the right hand. I still do well getting up from the table—problem was eyes adjusting before moving. Now, I stand and tell my brain to move my foot. Then, I start slow, until my leg is comfortable again at a better pace.
I don’t know where this is heading…so much change, yet already there is change in getting much needed help which ensures better safety.
“Your eyes saw my unformed substance; in your book were written, every one of them, the days that were formed for me, when as yet there was none of them.
How precious to me are your thoughts, O God! How vast is the sum of them!”
Psalm 139:16 & 17