Caught In a Web

Aloe Vera Plant and a Web                                             Image: Zebras Child 2019

The past week has been exhausting. In a mostly good way, but exhausting none the less. Observing Holy Week, celebrating Passover with my Jewish older daughter, her husband and my grandkids, and sadly, going through both holidays for the first time after my husband’s death. I still can’t get used to the singular pronoun of “my” grandkids for instance, rather than “our” grandkids. Each time I find myself erasing the word our and replacing it with the word my it is an additional reminder of loss.

I need to rest, and I have decided for the next week at least, to focus just on my photography rather than both my writing and my photography. I find both activities healing, but in trying to post five times a week, I find that I have time and energy for little else. I have loved getting immersed again in both and trying to re hone my skills in both. But the apartment needs to be cleaned, I rather desperately need to shop to replace my glacially slow 6 year old laptop, and above all, I need sleep. Massive amounts of it, actually. Perhaps as I put up a photo some words might occur to me, but I make no promises. So I hope you enjoy the process as I experiment more with my camera and start to retrain my eye.

Ordinary Beauty

Flowers and Light
                                Flowers and Light          ©Zebra’s Child

I’m still doing not much other than sleeping, which is exactly what my body needs. I can’t always sleep when I most need to because my sleep cycle is one more part of my body that doesn’t always function quite the way it should. So I am extremely grateful that Wednesday/Thursday’s infusions have balanced that out a little and has enabled me to get some much needed rest. Such is the miracle of adequate gamma globulin levels that the bottom of my left foot is already completely healed, and my right foot is doing it’s best to heal as well. This right foot is a little trickier because every time I walk on it the split opens up again, so it’s going to take a little longer. But with the infusion of gamma globulin, I know it will indeed heal with time.

The weather is a little cooler today, which is a welcome relief. The sinking sun this time of day is shining through leaves and flowers, transforming their ordinary beauty into incandescent light. All will be well.


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. 😉