Zebra's Child

Living With Common Variable Immune Deficiency and It's Autoimmune Friends

Tag: Managing Your Limited Energy

Looking Hard for Hope

Fallen Tree Leaf and Blossom    ©Zebra's Child

Fallen Tree Leaf and Blossom           ©Zebra’s Child

I’ve talked recently about sometimes having to transplant hope into dark places. But what happens when you look around and can’t find anything to transplant?

I’ve had a request from a reader to talk about what a day might look like for someone with a PID (primary immune deficiency). The idea here is to show how difficult it can be to live within a body that fundamentally doesn’t work the way it should, so that others struggling with CVID, or any other immune deficiency, will not think they are the only person in the world with difficult days. Knowing that you are not the only one out there can be profoundly healing.

So. Here’s a synopsis, with some background. Knowing that I would be 4 days late in getting my infusion upon returning from France, my doctor and I decided that the infusion I received before I left would be 120% of the dosage that I normally received. So far so good. I did wonderfully while I was in France with no infections or other signs that my immune system had to work extra hard. (That is, above and beyond the extra work it has to do on a daily basis.) I got my regular dosage of of gamma globulin upon my return, and all seemed to be well for about 4 days. I then came down with an infection, which is highly unusual right after an infusion. First signal that something was wrong. Since then, my immune system seems to have gotten further and further behind.

This Thursday will be the fourth infusion since I have returned from France. During the 3 weeks since my most recent infusion, my immune system has gotten less and less happy. Suffice it to say that for the last 3 weeks I’ve had all kinds of skin problems that haven’t been this bad in a year. I won’t subject you to the gory details.

Now on to today. Didn’t sleep well last night. Never do when my immune system is struggling this hard. I consider it to be one of fate’s cruel jokes, and will have a word about this with God when I die. Woke up about 8:00 and couldn’t get up. Went back to sleep. Woke up at 9:00 and still couldn’t get up. Repeat. Woke up at 10:00, let the dog out of her crate so my husband could feed her breakfast and decided that standing up was literally too difficult for my body to handle right then, so lay back down. Had an interesting conversation with my body about how I would really, really appreciate it if it would work a little better for me today because it was (is) my birthday and I felt so crappy that I hadn’t even remembered it was my birthday until my husband said “Happy Birthday” when I woke up. My body and I went back and forth with this conversation until 11:00, at which point my 88 year old mom called me on face time to wish me happy birthday. Her first face time call ever. She saw that I was still in bed and was white as a sheet, so this was her first sentence all at once, “Happy birthday dear oooohhhhhhhh you’re not doing well.” “No mom, I’m not, unfortunately.” We talked briefly and then hung up. I was hungry by then and so that necessitated that I get up to fix and eat breakfast. Then had a lovely phone conversation with a friend who also called to wish me happy birthday, but had to cut it short because I needed to move from the sitting up position to the laying down position again. Got up after awhile, took a shower and ate some lunch. Then went to my therapy appointment where I proceeded to cry while I talked about the fact that I have this darned immune deficiency, the skin on my feet won’t even stay together like it does on any semi normal person, and I really, really don’t feel well. I rarely allow myself to do that, but today it just felt overwhelming. I’m glad I did, though, because it actually made me feel better than I had all day. So I stopped by Trader Joe’s for some lettuce and bought some irises as well because I love irises. I came home, turned on the sprinklers briefly, put the irises in a vase, and then sat down to write this post, hoping writing this would make me feel better still. The jury is still out on that. Tried to make this paragraph somewhat humorous because humor is one of my coping strategies, and because I didn’t want this post to be so depressing that no one would read it. The jury is still out on that as well.

My therapist suggested that I postpone my birthday until the weekend. I think that is a really good idea, especially since we have theater tickets for Saturday night. Hopefully I’ll feel well enough to use them.

Loss

After

After

It’s hard, loss. It just is. I’m still a little weepy from encountering the about-to-be-fifth-grade student in the produce section of the market on Monday. When I allow myself to think about it, tears start to form. I could just push the feelings down and ignore them, but I have learned that if I do that, it just makes things harder later. Strong feelings that are suppressed don’t just go away. They lurk in the darkness, gathering strength, so that when they do surface, it takes far more resources to deal with them than it would have originally. I spent my childhood having to bury emotional reactions, so I count myself fortunate that I now can allow myself to feel appropriate grief and mourn a loss.

But that doesn’t mean that it is easy. And I’ve learned that it doesn’t matter whether the rest of the world judges something to be a major or minor loss. Only the person experiencing it can know how much a given loss affects them.

For me the sight of this 10 year old did not just trigger the feelings of the loss of my fifth grade classroom after my immune system collapsed. It triggered the feelings of loss over my life as I knew it.  The loss of my independence to be able to go where I wanted to go and do what I wanted to do. The loss of being able to plan an outing and knowing that I had a 99% chance of actually following through on the plans. The loss of feeling that I was making a positive difference in the world each day, and the loss of the sense of pride that I was able to do a meaningful job and contribute to the financial health of the household.

After my immune system collapsed, I wasn’t sure of who I was any more because I couldn’t teach, or work in any capacity. For several years I couldn’t go to medical appointments or the grocery store without help. I couldn’t even depend on my body to do what it is hard wired to do: stay alive. Even catching a common cold could, and sometimes did, lead to an intractable infection that would take months to resolve, and even longer to fully recover from.

When that happened, I knew that the only thing I could do was to put one foot in front of the other, each hour, each day, each week. If I survived, great. If I didn’t…. well, it would be regrettable, but not unexpected. I was too sick to do, or accomplish anything. I couldn’t read the newspaper or a book. I couldn’t make any plans for the future beyond the next few minutes. I no longer knew my place in the world, and had no idea how I would put my life back together, or if that would even be possible.

This was my life after my immune system collapsed. There was a Before, and then there is an After. My health has improved markedly in the years since then, and I have slowly been inching toward a more normal life. I have now taken a wonderful trip to France, and many days I find that I can write, or I might have the energy to walk around with my camera around my neck taking photographs of beautiful things. But I never know. The past several days my body has just sort of shut down and I’ve had to clear everything off my schedule except medical appointments. I’ve had to rest a lot, and can not even be sure if I will have the energy for using the tickets my husband and I have for a play tonight. We can exchange them if necessary, but still….

There was a Before, and there is an After. And seeing the 10 year old in the produce section reminded my heart of the Before. I am deeply grateful that I so passionately loved the last years of my career, and it is good that I am able to cry over the loss. But that doesn’t mean that it is easy.

Consistency

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.

Ups and Downs

Hi Guys. I’ve really missed talking to you. In general, I’m doing better than I was for those two weeks after Easter. It seems that I’ve got my medication sorted out, which is helping tremendously, and in general, my sleep has improved. Today I’m really tired because I had several days in a row that were filled with lots of chores and errands. But the reason I was able to get those chores and errands done was that I had several good days this last week, and that was wonderful! Most notable for me was that I was able to get my study tidied up. The clutter had built up and it was to the point that it depressed me to sit down at my desk. Now the small room feels spacious again, and orderly, and is once again a room I love spending time in.

The ups and downs of exhaustion are part and parcel of CVID, but I hope that if I rest today and tomorrow, I’ll have more energy again in a few days. Thanks for understanding.

xoxo
Hannah

Waiting

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?

Things I Want to Do In a Day

Not necessarily in order:

  • Sleep (yes, I want to do that before I even get out of bed.)
  • Eat
  • Sleep
  • Talk with my husband
  • Walk the dog
  • Sleep
  • Exercise
  • Go to appointments and/or run errands
  • Sleep
  • Eat
  • Tidy
  • Practice at least 30 minutes
  • Read
  • Work on the blog
  • Sleep
  • Eat
  • Watch a show
  • Talk with my husband
  • Sleep for a whole night without waking up (which never happens)

And……… well, you get the idea. I don’t sleep that sporadically during the day, but that’s an understatement of how often I think about it. And many days I need 10 – 12 hours of sleep a night. That doesn’t leave much time to get anything done during the hours I’m awake. If I have appointments on a given day, that often exhausts me all by itself, and nothing else really gets done. What between the Chronic Fatigue of the Fibromyalgia and the Chronic Fatigue of an immune deficiency, I don’t begin to have enough energy for everything else on the list. So I pick and choose. But all too often, other than eating, sleeping, walking the dog and talking with my husband, I don’t have energy for much else. And sometimes I can’t even walk the dog. And I sure wish it were different. I really, really wish it were different.

There Is No Beginning

I did not get the cleaning done yesterday that I wanted to, but I did get several errands done, including getting the dog groomed. That was a biggie because she had begun to stink. And they were errands that I would have put off until “tomorrow,” or the next day or…… if I had sat down at my computer. So it was still a productive day in terms of the daily living of life chores that I find so difficult to accomplish now-a-days.

One of my more pleasurable errands took me into Target which, believe it or not, I find relaxing. Even if I am there to buy practical things, as I was yesterday, there are always pretty things to look at: makeup, clothes, jewelry. And that always relaxes me.

I had paused to look at some necklaces, when two of them in the locked up case struck me. They were small, and probably aimed at the pre-teen set, but it was their very delicacy that had first attracted me. Each one was affixed to a card to better display it, and had a nugget of wisdom written at the bottom. The two that I kept starting at were an infinity symbol and a very small solid heart. The infinity necklace had written below it, as best as my memory can recall, “There is no beginning and no end. Just life lived with infinite passion.” And displayed very close to it, the card for the small heat said something like “Small acts done with a great heart.”

Taken together, they are a pretty good description of what I strive for. My “infinite” passion certainly feels less than it once was. In fact, even thinking about infinite makes me tired. Truly. I can no longer sing, or play with my grandchild with the same energy that I once had. It is hard to live completely in the moment, when chronic fatigue dogs my every step and I frequently find myself wondering, no matter how much I am enjoying something, “How long before I can lie down?”

But I think that I can do small acts with a big heart. Sometimes it’s smiling at someone as I pass. Or maybe it’s putting away the dishes in the dishwasher so my husband doesn’t have to do it, even though it takes the last bit of energy I have. Sometimes it’s staying in bed even though I don’t want to, so that I don’t further exhausted myself and thus increase the work my husband has to do. I can no longer measure my life by the things I can accomplish. Right now I cannot teach a class of fifth graders, and I don’t think I’ll be hiking to 10,000 feet anytime soon. (And yes, I am still super proud that I did that!) But I’m not going to give up on living. I’m just not. And I can do things with a big heart. And with as much infinite passion as I now posses, which means that it is, for me, right now, still infinite.

Tidying

In trying to write a post five times a week, I have discovered three things (well, at least three):

  1. I don’t have the energy to both write each day and tidy up the house.
  2. I will choose writing over tidying every time.
  3. The house has now gotten so untidy that it is starting to depress me.

Since I am a person who has struggled with depression for years (and yes, I take medication for it), I have decided that today, with whatever amount of energy I have, I will tidy up as much as I can. I know from experience that a tidy house will make me feel cheerier. It gives me at least one aspect of my life over which I have some control. The problem is that I hate spending my limited energy actually doing the tidying. So I put it off. But getting it done is actually a way of taking care of myself, as long as I don’t over do it.

So today I will not let myself write until I have gotten at least two areas clean, clear, and peaceful. The oxymoron embedded in that sentence can be explained by telling you that I actually wrote this post last night.  😉

Now do something for yourself today that makes you feel better. Even if that something is taking a nap.

See you tomorrow. xo

Moderating Energy

It’s hard to try and lead some semblance of a normal life with the limited amount of energy we CVIDers have. It’s hard, when I’m out doing errands to resist the temptation to just get all the errands done, all in one day, so that I don’t have to go out again for the next couple of days in order to get the necessary things accomplished. I will be in the middle of errands, and feel my energy fading, and think, “Just 2 more stops. 2 more. 2! Can I please just get them done, and then I will have no imperatives forcing me out of the house when I don’t feel well for a few days.” Sometimes I’m so frustrated that I do just press on. But then, those two or three days that I had hoped to just stay in and get some things done around the house turn into days that I can get nothing at all done, because I simply have no energy left. So I haven’t gained anything at all.

The last two days, however, I actually succeeded in staying tuned in to my body. On Monday, my husband and I went to look at some art prints. We got tired and hungry, and then went in search of some lunch. (Itself an event, since we don’t often splurge on lunch out.) We had a very enjoyable lunch, went back to look again at the two prints we really liked, and then went home. I really wanted to work on the curtains (which I still haven’t done), but realized that there was no way that I had the energy. So I sort of collapsed. Then Tuesday, I went with one of my closest friends to see the condo she will be moving into, we looked at some more curtains (I don’t always trust my eye when looking at color, so i wanted a second opinion), then went to lunch. When I got home, I went to bed and slept solidly for two hours! Couldn’t do much else the rest of the day.

But the pay off on both of these days was that I was able to get up each of the next mornings, and actually be able to do some things. I’ve had CVID for 9 years. Sometimes I’m a very slow learner!