An Elderly Aunt Gave Me Good Advice

Many years ago I was with an elderly aunt whom I hadn’t seen in a very long time. She was in her 80’s then, and looked like she was still very physically active, but when I asked her how she was doing, she admitted that she had really slowed down. She had contracted polio as a child, but had never let that stop her from achieving things. But the muscles that had been retrained to take over for the muscles that had been paralyzed by polio were beginning to wear out; those muscles had been doing not only their own jobs for decades, but also the “take-over” jobs that they were not designed to do. So she was finding that she was not not as mobile as she had been, and that she needed to be really kind to her muscles.

Her solution? Each morning she did some gentle and then more serious stretching while she was still lying down in bed. Under the covers, while her muscles were still warm. She said it made a world of difference not only for her overworked muscles, but also for her arthritis. She was sharing that trick with me because I had just told her that I had been diagnosed with pretty severe fibromyalgia a few years before.

Have I practiced that particular discipline every day since then? Ummm…. not even close. Not even close to close. But now, as I’m trying to consciously work some fitness into my life, I find these under-the-covers-first-thing-before-I-get-up stretches are very helpful. It feels good to stretch my muscles again, and my body doesn’t seem to complain with this routine because: I’m not putting any weight on any of my joints as I stretch, and I’m stretching while my muscles are still luxuriously warm. This is me taking very small steps these last two weeks because I have been feeling super exhausted and run down. I can’t meet my daily exercise goals at the moment, which is why it is important to at least do what I can do, rather than doing nothing at all. This should be the mantra for all of us with serious health conditions. We should be mindful about the choices that we make, and then do what we can do. And knowing that I have done something that is good for my body makes my day better.

Trying to recover…….

This year the week after Easter happened to coincide with various meetings and medical appointments that I couldn’t get out of. It is usually my week to hibernate and sleep as much as I can. But I haven’t been sleeping as well as I had been a few weeks ago due to a change in medications, and every day seemed to have an appointment of one kind or another scheduled that required me to be alert and knowing what I was talking about. Not easy when exhaustion makes my brain feel like it is stuffed with pre-spun wool. For that matter, pre-carded and pre-washed as well. For those of you who have never gotten into spinning,  that means that the wool has just been shorn from the sheep and still has all the sticky lanolin and burs in it. Darned burs.

At any rate, I’m trying to take this week really easy and sleep as much as I can. And I have infusions at the end of this week, so I should be doing better next week. I hope. So right now I’m going to eat, and then try to go back to bed. This is my way of trying to accept that my body just can’t do what it used to.


I observe Holy Week (the week starting with Palm Sunday and ending with the celebration of Easter) each year not only because it is my Anglican religious tradition to do so, but because it grounds me. It gives me a structured time to go inward and review my life practices, how my changing life might still be of service to others, and the opportunity to meditate and pray more. It also is a week of intense physical work, as we are contracted for many extra hours of rehearsals and performances. By the time Easter is over, all of us with service obligations are pretty exhausted. But I wouldn’t trade it. I choose each year  to commit myself to the discipline because I come out refreshed, and with a deeper sense of purpose and a clearer sense of what is important in my life.

If yesterday, Good Friday, was about betrayal, denial, and trauma, all of which have parallels within our bodies and psyches as we try to come to terms with our illnesses, today, Holy Saturday, is about waiting. For me, today is about mysticism. A time to let all of our emotions flow through us, without judgement on our part. It is the flow itself that is important. Waiting expectantly, quietly, without being attached to the results. Waiting to see what will be revealed.

Start Small

Really, really small.

Microscopically small if necessary.

I don’t know about you, but I respond best to success. If I never seem to succeed, I will eventually give up. I’ve got a lot of grit, but really? Constant failure does me in every time, and I think that’s true for all of us. So if those of us with significant health issues want to start taking a more active roll in improving our health, where should we start? We can’t even dream of comparing ourselves with people who are able to make it through an hour at the gym every day, or run a mile, or, heck, even manage to have enough energy to make it through a one hour gentle yoga class. So what do we do?

We start small. Really small. Never mind inch by inch. I’m all for millimeter-ing. We take steps so small that perhaps only we can see it. A close friend of mine recently had a fall that caused many broken bones, which was then followed by a stroke that left her right side paralyzed. She is a go-er and a do-er, and has been all her life, so this was extremely difficult for her. I suggested that, in consultation with her physical therapists of course, she set her first goal at something like 2 steps unassisted. Once she met that goal, she could raise the bar. And I reminded her that the more often she met her goals, the faster her healing would progress.

Admittedly, those of us with chronic conditions have bodies that respond slightly differently than someone who was basically healthy before an accident or injury occurred. But we can apply the same principles. Remember that 15 Steps Was an Aerobic Activity. And after my first hospitalization 6 years ago, my goal was to reach a time when the 15 steps to the bathroom and back would only leave me shaking in a fetal position for 50 minutes instead of an hour. It took a many weeks, but that time did finally come. And over the course of several months, the trip to the bathroom got to the point where it no longer wiped me out. Months, you say??? Yeah, but that was as big a victory for me as running a 10K marathon would be for many people. And runners spend months training for a marathon event, right?

So we need to give ourselves pats on the back, kudos, blue ribbons, gold stars, badges, trophies, anything that will let us know that we have accomplished something mighty.

For we are Mighty Warriors.

And maybe we should start a Mighty Warriors club.

Who’s in?

15 Steps Was an Aerobic Activity

As more time passes since my last intractable infection and hospitalization, my health has slowly (ever SO slowly) improved. I won’t say steadily, because with a PID there are more ups and downs in our health than we can even keep track of. But if I were to look at a graph of my health over the last 10 years, the overall slope would not only be positive but the rate of improvement would be increasing.

I’m well aware that if I had maintained my stubborn insistence of continuing to teach full time for another 7 years (or even 1 or 2), this would not be the case. But my doctors told me that I really didn’t have much of a choice: I was steadily getting sicker and sicker, and unless I was willing to consider early retirement on disability I was headed toward putting my life at risk. I may have an over abundance of stubbornness in my genes, but that language was pretty stark, and forced me to pay attention. This was 4 years ago, during the time I was hospitalized for 2 weeks, housebound for 7 months, needed to be driven to all my medical appointments, and discovered that leaving the couch to walk 15 steps to the bathroom was an aerobic activity. So at that point, I didn’t need as much convincing as I once did. I also knew, if I was honest with myself, that I had been forcing my body beyond it’s limits for about a decade. And it had all finally caught up with me.

But I have spent the last 4 years slowly rebuilding my health as best I can. And at this point, I can take a more active role in improving my health. So next up: start small.

Balancing Medical Conditions

It’s so frustrating! Those of us with a PID, or probably any other severe health condition, such as cancer, dialysis, MS, RA, etc, find that the balancing act within our bodies is, shall we say, extremely complicated. And that’s putting it mildly.

Example: I am prone to extreme edema, and need to balance it with diarrhetic. But then my sodium levels get dangerously low, so my doctors start to freak out. I mean, really freak out since extremely low sodium can result in seizers and death. I can’t just eat more salt, since too much of that causes my edema to get worse. And I can’t just double my water intake, since too much water dilutes my sodium levels. So I try to judge the diarrhetic dosage, depending on what my body is doing that day. High temperatures make my edema worse, so after I start to puff up, I have to take more hydrochlorothiazide for a few days. But oh, wait. I had a cold with a cough for a few days, so I took some cough medicine. Which had a decongest in it, which means it also acted as a diarrhetic. So, whoops! Too much diarrhetic. So now I’m whizzened, slightly dizzy and look like a prune.

And, well…… it never seems to end. Sometimes I feel like all my time is spent trying to balance medication, stay healthy, and get necessary rest. Most people can do that in the background of their days. Those of us with critical health issues often seem to spend most of our day trying to stay on top of those issues. Or at least it sometimes it feels that way.

Sigh. I think I’ll go walk the dog. I almost always feel better after I’ve walked the dog. And since it’s already dark, at least I won’t notice that I look like a prune.