I don’t know if I will ever be able to do more than I can right now. The home therapist told me that while it’s certainly possible to see additional changes up to two years post-op, it’s also possible that I won’t see any improvement at all in the next six months. I need to be prepared for that while not being depressed. I don’t much like my new normal but I’m getting used to it. But it’s hard to keep the enthusiasm up for therapy and workouts and exercise when it seems that that’s all I’ve been doing for eight months.
On the other hand, even if I don’t get better, I don’t want to go backwards. I’ve worked too hard and am mostly independent; I want to stay that way.
I have to be weight-bearing every day one way or another to make sure my legs don’t atrophy. I work out on the NuStep five days a week (on the advice of therapy) to strengthen my legs. Everything I do takes so much time and most mornings, the words heard most often are “Oh, crap!” as my legs run into doors or get stuck on carpets, or I see cat vomit to be cleaned up. Dressing takes 20-40 minutes depending on whether I can wear the zipper shoes or need the AFO’s to start the day. And if I start with zipper shoes, I will need to change to AFO’s later to do therapy and walking. I hate them. And I hate putting them on.
On the other hand, I have feet. And I’m not freezing in a dark basement on a concrete floor while bombs go off around me. I’ve thought about what it would be like to have my limits and be trying to survive in Ukraine right now. I think I would be dead because I couldn’t escape. That certainly brings things home. My limits are still in a warm, comfortable home with food, water, heat, and Internet service, and I’m grateful for that.
At the same time, I’ve made some medical decisions about my body in light of being mostly in the chair now. I’ve told my doctor and my family that I am not going to do any diagnostic testing such as mammograms and colonoscopies because I don’t want to do anything if the tests find a problem. I know this could mean a shorter life, and frankly, that’s okay with me. While I have people who love me, I have no husband, partner, or children and the medical decisions are mine to make. I’ve been totally dependent on others to help me turn, stand, move, use the bathroom, etc., and I don’t want to go there again. I don’t have a death wish and I’m not planning to do anything to end my life. I just don’t want to have medicine prolong it just because they can. I am not afraid of death when it is my time.
That time is not now, and I’m not giving up even though I’m tired of my new normal. But I also can’t operate on the kind of higher-stress levels that I had in early therapy. I’m trying to figure out how to have an open house of some sort here to show my new home to my local friends – who I really miss seeing. And also to work out some sort of life that doesn’t only include NuStep, lunch, walking, and therapy. That gets old fast. It already has.
I’m ready to weed out and declutter more, though it’s much harder to do from a wheelchair than when you can just stand up. I have clothes to bundle up and kitchen things to take to Hangers for Hope, as well as some broken or other weird things that just need to be tossed. And several bags of books to go to the used bookstore. I have a big pile of Birkenstock sandals that I can no longer wear and purses that I won’t use that can find new homes. But I need help to get things packed up and carted away to appropriate places. It’s hard to ask for help but I know that it will be there if I do. It’s time for a plan to make it happen so I can make some breathing room. You know, before the open house.