I had an interesting phone call today with my physical therapist. (Did I mention that I started physical therapy??) He was following up from an email I had sent him earlier this week, so his call wasn’t surprising. But it put into spoken words one thing I’ve been struggling with for the past few weeks: having to blindly select from a bunch of options.
The current issue is whether or not I should continue physical therapy and if so, why. In other words, what is the goal of physical therapy for me specifically?
I think my therapist became pretty defensive about how therapy could help things get better and that change could take a while. Perhaps he thought that I was concerned that therapy was making things worse.
But after a lot of time thinking through it, I think I’m grappling with a totally different issue. Is physical therapy really a priority for me right now? Time, energy, and money are all limited for me. Some of those variables I control; most of them I don’t. My question is not whether or not physical therapy is contributing to the problem, but whether it’s the best use of my resources at this point.
Right now, I’m only able to go to work. All the rest of the time I spend in bed, mostly asleep. If I’m lucky, I get to watch TV, do laundry, eat meals, read my mail, etc. I do get out to weekly counseling and now physical therapy once a week. It’s a major goal of mine to make it to at least one church meeting a week, but it doesn’t always happen. And it sucks because that’s really important to me; even in graduate school, I made it at least once a week.
So if we think that the long-term benefits of physical therapy are barely measurable and I can’t get out of bed for almost anything, is it really that important for me to be in physical therapy right now? My youngest sister would argue that it’s more important that I actually eat three full meals a day and that I eat those meals on a regular schedule. (Otherwise, it’s 4 pm and she’s knocking on my door wondering why I haven’t eaten yet.)
I think that’s one thing the doctors at the Clinic of St. Jude haven’t picked up on yet. Lack of proper stamina is a huge component of this. They’re very cognizant of a central sensitivity syndrome, which implies that pain is a big factor and that things cannot be done in a jerky fashion. What they seem to be missing though is that there is severely depleted currency. And that is a determining factor in everything. As much as outsiders might be tempted to ignore it, for the consumer it’s a real limitation.
The nurses and staff at the Clinic of St. Jude encouraged me very much to take ownership of my treatment and my illness and not to let professionals boss me around. They told me that a patient knows what is best for him and his needs. Only you can know that. That was very helpful.
The tricky part is that I’m being thrown a lot of options. Most of them are being proffered by people who aren’t sure what will be useful but are trying to be helpful. And my limited currency forces me to choose. I feel like I’m making these decisions in the dark, and I’d rather make informed decisions since many people (including medical professionals) will be demanding explanations for the decisions I make. I’ve learned to ask a lot of questions and seek out as many resources as I can. But sometimes it’s helpful to have practitioners talk to each other about what’s really going on. Because they’re trained in the vocabulary and think of things that I don’t even know about. It’s been tricky though having to convince people that I’m trusting and relying on their expertise, not questioning it.
All in a day’s work,
Abigail
hidden courage 