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.

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?

Is There an App???

All of us with a PID (Primary Immune Deficiency) or any other debilitating medical condition are trying like crazy to stay as healthy as we can and hopefully work our way toward getting healthier. I would say “There’s an app for that!” but I’m not so sure there is. The major difficulty in trying to chart our fitness/health progress, as i see it, is that for us, it is so variable. Sometimes we inch our way forward. Sometimes it seems we can progress by comparative leaps and bounds. And, well, sometimes those differences can be on back to back days.

And sometimes, of course, it’s all we can do to get out of bed. After a day and a half of infusions, I often sleep for the better part of two days. And for me, at that particular point in time, that is me working to stay healthy. And what app understands that? The automatic “steps/milage/flights of stairs climbed” tracker that came with my phone shows that Sunday I walked a total of about 800 steps. That was two days after my infusions. Monday it shows I walked about 3,500 steps. I felt better by Monday. Not my best day by any means, but a quite remarkable amount of steps for me, 3 days out from my infusions.

Why am I even bothering with trying to find a fitness app, or trying to keep track of my steps? Because if I have a goal I’m working toward, no matter how small, I’m much more likely to push myself just a little harder. If it’s 8:00 PM and I’m only 62 steps away from meeting my goal for the day, I will gladly walk around the house in circles in order to get in those last 62 steps.

But how exactly do I set realistic goals on fitness apps – even the one that my insurance provider gives to me free? Don’t get me wrong: I’m not comparing myself to the people out there who are healthy and for whom fitness is just a way of life (as it used to be for me). I’m just comparing me to myself on similar days. For me to have walked 3,500 steps on Monday, three days after my infusions is a big deal. But it still doesn’t reach my own software stated goal. And yes, of course I already know that just one or two days after infusions I won’t even come close to reaching my goal. But it’s discouraging to see the puny progress on Sunday’s graph when I know that 800 steps was an accomplishment, all things considered.

And I’m not even counting the days or weeks or months in which I am battling active infections because, well, at those times I don’t even look at my graphs. At that point I fingure I’m doing a bang up job just making it from one day to another without too much complaining.

I know that on many Health or Fitness apps I can go in and adjust my goals. But that would take effort on days I don’t have much effort to muster, and I would also feel a little stupid doing it. As in, “What’s wrong with this lady that she can’t even make up her mind what her goals are?” And yes, I do make comments on my pedometer tracked walks as to how I’m feeling health-wise. But what I need is an app that has the ability to have a moveable target, depending on how many days out from infusions I am.

So – does anyone have a suggestion? Guidance? Words of wisdom? If so, please, please share.

Because at the moment, I really don’t think there is an app for that. At least not one that I’ve been able to find.