Living with CMT, Day 14,678

My first day of physical therapy for this hurt ankle was today. And, while I am excited to start a new phase of healing, I am also overwhelmed by the work ahead. The tendons are tight. I can't get my heel on the floor at all. My ankle is still swollen and sensitive. What are the statistics now? Days since injury: 53 days (7 weeks, 5 days) Splints, casts: 2 splints, 1 cast, 1 walking boot Prognosis: Slow, painful Diagnosis: Bone contusion (bruise) and sprain Tests: X-ray and MRI

No wonder I am exhausted. The physical therapist was patient and helpful. She listened. My CMT is such a house of cards these days, where each breeze tumbles a new layer apart. Yes, the ankle is a mess, but it is aggravated by weakness, which meant the ligaments twisted worse than expected. And complicated by circulation issues. Oh, and there is the arthritis in the arch which makes stretching painful. Then my hand is flaring up, but that's no big deal because I am used to that...

When people listen, really listen, this story goes on and on. And it circles. We are in the planning phase of therapy, so I don't have exercises yet.

But I got to thinking about hidden costs of managing chronic illnesses like CMT. Years ago, when I got my arthritis diagnosis, I had physical therapy. We had to stop, though, because there was no measurable outcome. Basically, there was no way for me to get better. So why bother?

It would benefit everyone if our healthcare model shifted to a proactive plan. Perhaps, if I had been exercising thoughtfully, I would have had more strength and the injury may not have been so dramatic. This is speculation, I know. And I really don't like to pretend I have control over the course of this disease. And, yes, I call it a disease ever since it started getting worse. And worse. Before then, I called it a disorder. As in nerves out-of-order. Disease, disorder, both are true.

Anyway, I don't want to pretend that choices make all of the difference. We are passengers, not captains on this journey. At the same time, preventative care could make a big difference. Yet, who pays for the health club membership? Because sidewalks get sketchy and I need a pool that is warm for water-exercise. So, hidden costs. This is a little dreaming on my end. These are gifts that would allow me to focus on wellness, allow me to thrive instead of survive.

I need exercise, ideally overseen by a physical therapist or other professional to plan healthy activities and expectations. I need housecleaning, preferably weekly. I need landscaping help. Lawns, roses, and yard care are inaccessible to me. I would benefit greatly from massage therapy that relaxes overtight muscles and helps circulation. I need higher home temps in the winter and lower home temps in the summer. My whacky circulation makes it very difficult to regulate temperature. I overheat or freeze easily.

I am sure that I will think of more things. Perhaps a post of its own. Of course, I don't get any of these things. We did just join a health club to build strength. And I have physical therapy to help with the ankle for the next month. But the rest of them are dreams :)

I don't know who would fund these efforts, but I bet it would pay off in the long run with fewer injuries and better health. Would be nice. I like nice ideas.

Although, for me, these are more than dreams. They are hidden costs. Since I don't have help, I spend precious energy on chores. Then I am snippy and exhausted. We had help with the housework before my husband lost his job. What a huge difference in my energy. We had help every other week, and I was about to stretch finances for weekly cleaning. Then he lost his job. So the house gets messier (not dirty- I can't stand dirty). Then I stop inviting people over because of the mess. Which leads to social isolation....

Whew! Did I mention a house of cards earlier? And stories that circle and spiral?

Falling, falling...

Puzzles for another day. Like I said, this visit stirred me up. Hopefully sleep will settle me down. I try not to spin out. I try to focus on here and now. Where the weather is lovely, the kids sleep deep, and I will dream happy dreams (I hope).

Good dreams to you, too!

Anika and Tiger. You can see the clutter on the table in the background. Fun for tomorrow :). Oh, and I am also a mom who would rather spend my energy creating memories with them instead of keeping every toy tidy. When energy is in short supply, you must choose. I choose them.

Of course :)