Transplanting Hope      ©Zebra's Child
                      Transplanting Hope                ©Zebra’s Child

Sometimes we have to transplant hope. To physically move it into the dark corners of our lives when we cannot see anything but destruction. Sometimes the destruction is within us: our medical disease, our prejudices, our failure to act to right a wrong. Sometimes it is out there in the world: discrimination, hatred, violence. But as human beings, we need to hope. If we don’t hope, we are immobilized by exhaustion and fear, and our necessary vision and creativity desert us. That’s when we need to remember that sometimes it takes effort to summon hope. It takes some digging, some watering, and then some care and attention in order to see it thrive. It’s easier when hope simply springs up unbidden and is there when you need it. But other times we have to go searching for it and then physically transplant it. It may at first look out of place amidst the destruction. But that is where it is most desperately needed.


Yesterday I felt pretty good. Today I feel pretty terrible. Such is the CVID life. I’m dizzy, tired, and have no energy. Perhaps it’s because I’ve pushed myself too hard these last few days, or because I didn’t sleep well, or because it’s hot, or because I ate/drank some foods that my digestive system didn’t agree with, perhaps it’s because….. well, you get it. Everyone with a severe chronic disease gets it.

One of the problems with a serious chronic condition is the seeming randomness of it from day to day. Sometimes we can track down a cause and effect (i.e., my sleep app confirmed what I already knew: I didn’t sleep well), but sometimes we have no idea. Or we can guess on some things, but have no idea what else might be playing into it. It is the seeming randomness that drives me crazy. I want to scream, “I had plans for today, dagnabbit!” But instead, I’m spending most of the day in bed, sleeping and resting, which obviously my body needs. Which is part of Taking Care of Ourselves.

But I have been writing a lot about fitness lately, and the question is, how do we keep up with a fitness routine on days like today?

The first thing is to realize that we can’t compare ourselves with healthy people. My staying in bed today isn’t laziness or giving up. Neither is it a case of staying in bed simply because that would be the easy thing to do. It is, in fact, what my body is demanding. I’m sure it has been hinting to me over the last few days that I needed to get more rest, but I ignored it, and so here I am, basically immobilized for the day.

So what to do about fitness on days like today? We do what we can. The important thing in exercise, or any discipline for that matter, is consistency. It is almost always better to do something rather than nothing. What have I done so far today? I spent at least 20 minutes stretching every which way under the covers before I got up. That practice is not only good for my overall health, it helps to counteract the increase in fibromyalgic pain that would occur from staying in bed most of the day. I also should be able to still take the dog for a short walk. And I hope to still be able to go to rehearsal. Singing will help me feel better.

Slow and Steady Wins the Race

I’ve been talking a lot about fitness, and how we can try to stay fit and healthy when the very nature of our disease means that we’re not healthy. We depend upon blood donors to stay alive and even the smallest, random infection can lay us low for days, or worse, put us in the hospital on IVs. But we have to work to stay as healthy as we can, or we are even more prone to succumbing to a viral or bacterial  illness. I’ve talked before about managing our limited energy, trying to stay tuned in to our bodies and not overdoing it, trying to be careful about how much we schedule in a day, and trying to rest when we need to rest, even when we really want to get just one more thing done, like a “normal” person.

But lately, I’ve talked more about how we can systematically build up our strength. One of my barriers to this is that if I’ve done a lot during the day, and am exhausted, I think, “Well, I don’t need to exercise today, right? I mean, I’ve done a  lot, and I’m exhausted!”

Here’s the thing I’m learning, though. Scurrying around, squirrel like, from one thing to another all day is not the same as exercise. Sure, we use muscles doing things like lifting grocery bags, taking care of laundry, etc, but it’s not the same as targeted exercise.

Using grocery bags as an example, carrying them inside is not the same as using barbell weights to strengthen our arms and shoulders, no matter how much we wish it was. In fact, using the weights on a regular basis enables us to carry in the groceries without getting as exhausted doing so, because we’ve built up those muscles in our shoulders and back. My small step philosophy: If you hate using weights, follow the advice one of my nurses gave me a few years ago, and use them while you are watching a show. (Or my favorite, while you are listening to music.) You won’t mind them nearly as much. And don’t start out with the heavy ones.

A couple of years after my first hospitalization post-diagnosis, I had lost so much muscle mass that my regular 2 lb weights felt like they weighed 20 lbs. That’s not an exaggeration. So I tracked down a sporting goods store that carried ½ lb weights (which by itself was a huge effort back then), went in (also a huge effort), and asked them where their weights were. The sales clerk took me over to the display, and I picked up the half pounders, one in each hand, and was pleased. The clerk, trying to be helpful, suggested that if I wanted something lighter than the 2 lb weights I had at home, that I go for the 1 pounders because the ½ pounders were so light it would be like lifting nothing. I told him that I was going to purchase both the ½ lb weights and the 1 lb weights, but that I needed to start with the ½ pounders because I had been extremely ill, and even the half pounders were going to be a challenge. He seemed to mean it when he said he was sorry that I had been so ill, and that he hoped the weights would help to build up my strength. (Note here: You often can only find ½ lb weights in the children’s exercise section. They were so small my hand barely fit in the bar between the ends.)

Several days later I started to use the half pound weights. I found I could do 5 repetitions of several exercises without completely wiping myself out. That was my goal: weights that I would be able to use that would make me tired, but not wipe me out. I worked at upping my repetitions and number of exercises, until I was ready to graduate to the 1 lb weights, and eventually get back to my 2 lb weights. I might eventually reach 3 lbs, but at the moment I’m happy with 2. When a routine gets easy, I add more repetitions and/or more exercises.

You don’t have to be a fitness nut to do this, and you don’t have to think of it as fun. I can assure you that my reaction is definitely not, “Oh goody, now I get to use my weights!” But I love what the process enables me to do: lift a box that needs to be moved and not have to wait for one of my adult kids to be around, carry in the heavy groceries without having to lie down for a half hour afterwards, or lift a toddler into a car seat.

And remember that building up endurance and strength takes awhile even for someone young and healthy, and I am neither. So all of this requires patience, something I don’t always have a lot of. But the rewards are worth it; I can work toward regaining little portions of my life, here and there. And that is something I used to think I would never be able to do.

Also Notable………

Even though I was quite tired on Saturday, we really needed to get out to the garage and move some boxes of books around. Our previous house was larger than this one, and had less windows, so we had significantly more wall space. Being the crazy academics that we are, we had over 100 liner feet of hardback books on display (and don’t even ask me about the number of feet of shelf space we had devoted to paperbacks).

The small, beautiful 100 year old Craftsman that we live in now is our dream house, but the one disadvantage is that we can’t begin to display all of our books. Which means most of them are out in the detached garage in labeled boxes. Thus, whenever we need some of those, we need to switch some books out. However the real challenge is to find the books in the garage that we are looking for. The labels on the boxes are pretty accurate, but the boxes are all stacked neatly (thanks to our children’s help) in 3 box X 3 box grids, 3 boxes high, on 2 separate pallets. Thus 54 boxes. Stacked. The operative word here is stacked.

We used to have more than twice that many, but several years ago, during the last year that we in California had any significant rain, the garage roof leaked, I was too ill to deal with it, and we lost over half of our books to mold. But I digress…….

At any rate, since my husband is retiring, he now has time to delve back in to some research and writing that he hasn’t had time to pursue in several years. Thus the need to access some of the books in the garage. For various reasons he is no longer able to lift heavy items, which means that I was the one doing the heavy lifting (literally).

Which makes me happy. I found I was once again able to lift 40 pound boxes of books and move them around. I haven’t been able to do that in over a decade!! So all the little steps toward fitness that I have been taking are beginning to pay off. And that makes me very, very happy.

Balance and Fitness

One of the necessary components of fitness is our balance. When we are young, healthy, active (or any of the above), we take the fact that we can balance for granted because our bodies just do it. Balance is so hard-wired into our system that we only notice when we can’t balance.

And then something happens: a medical diagnosis, an accident, a stroke, age, medication, or any one of a number of possibilities, and all of a sudden, we find that we can’t balance as well as we once did. The reason this is important is that when our balance is off, we tend to fall, and the falls can injure us. And that really complicates things.

Obviously, then, the best thing is to not fall in the first place. But it’s not as easy to accomplish that as it might seem. I have found that when I am sick with an infection, in a lot of pain, or even under a lot of stress, I don’t pay as much attention to how I’m moving through space. It’s not that I’m being careless. (Well, ok, sometimes I am when I’m really in a rush). It’s just that under these circumstances my mind and body are overloaded with other things. Which means that it becomes even more important for my body to be able to balance without my thinking about it.

Luckily, improving balance can be easy to fit into our routine, even on days when we may be feeling crappy from an infusion, or days when we are exhausted just from getting through the day. It doesn’t even take extra time, so it definitely meets my definition of taking incrementally small steps toward improving our fitness.

Ready for the no-extra-time miracle? Stand on one foot while brushing your teeth. Brushing your teeth should take at least 2 minutes, so stand on one foot while you are brushing your upper teeth, and then switch to the other side while you are brushing your lower teeth. Unless you have been doing other exercise, you may find this surprisingly difficult in the beginning. A full minute is a surprisingly long time to stand on one foot without needing to touch the other toe on the ground to regain your balance. And it becomes more difficult when you are doing something else that requires coordination: brushing your teeth. I used to have very good balance, so I was shocked at how difficult I found this task to be. I had to touch my other toe down, or lightly touch the bathroom counter several times each minute to regain my balance. But within 4 – 6 weeks of doing this every day, my balance had improved markedly. You can also do this exercise while standing in a checkout line, or waiting for your partner to get that one last thing before you leave the house, or standing up while watching your favorite show. Thus my claim that the exercise takes no extra time out of your day.

There are, of course, additional ways of improving your balance: taking a long walk, yoga, fencing, playing hopscotch, taking a dance class. All of them more fun than standing on one foot while brushing your teeth. But you don’t usually do those activities every day (with the possible exception of long walks if you have a dog), and I certainly hope that you do brush your teeth every day. 😉

Is this my only fitness goal each day? No. But on days that I have been hooked to an IV for 8 hours, or I’m recovering from a really rough infusion, it is one more little thing that I can do. And there are lots of days where I need to count up the things that I can do, rather than counting up the things that I can’t.

You can find more tips on balance on this page of AARP’s website. And you don’t have to be 50+ to use their site. Many of their tips apply equally well to those of us with serious health conditions. Don’t be afraid to check it out; it won’t make you old, I promise. 😉

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.