Bodies in Motion

June 2, 2017 at 12:29 pm (Uncategorized)

It’s been a great few weeks. I’ve been feeling better and better and therefore able to do more and more. I’ve been using my office space downtown working on my book, which I’m now about halfway done with. I’ve been meeting friends for lunch. Last week, I reintroduced the gym into my life. I’m only able to ride the stationary bike for twenty minutes at a time, but it’s a start. I’ve also returned to the kitchen and am cooking (almost) my fair share of dinners. Tomorrow, I hope to build on this momentum—push myself to work an extra twenty minutes on the book, ride five more minutes on the bike, and make pad Thai for dinner.

And then, it all comes to a screeching halt. Thursday is treatment day. It’s time for my monthly all-day infusion of ivig. I need to get this medication since, probably because of the sarcoidosis, my immunoglobulin levels are dangerously low. So I get this monthly boost not only to fight the sarcoidosis, but also so I don’t catch every bug in the universe. Before the White Coats figured out I had low immunoglobulin, I got pneumonia four times in three months. But as much as my body needs the ivig, it fights getting it. It takes 200 mg. of Benadryl during six hours of infusing to prevent me having an allergic reaction to the infusion. That’s a lot of Benadryl. It leaves me dopy and confused for a couple of days; the treatment knocks me back into bed for at least a few days with flu-like symptoms and a raging headache. I hate treatment days.

For me, one of the most challenging aspects of living with a chronic illness is the lack of momentum. It seems like just when I’m getting into a positive routine, it’s time for another treatment, or the disease flares, or something stalls me in my tracks. I am very much a creature of habit. I see this most clearly when it comes to my writing life and exercise. It takes a lot of willpower for me to get into a routine with both of these. But once I’m on a schedule, I seem to keep rolling along.

I’d like to get better about picking up my routines again as soon as I feel better after a treatment day. I lose precious time getting back into daily life by procrastinating. I don’t think this is unique to me or to chronic illness. A good friend is dealing with aging parents, who are often in crisis. She has no control over when she has to make a trip to help them, when her momentum gets stalled. Life is a process of rebuilding. I know that. But it’s still hard.

What are your strategies for dealing with a loss of momentum? How do you get going again after you’ve been stalled?


  1. Patricia L Heinicke said,

    So glad to hear you’re feeling better! (Aside from the IgG, of course–ugh.) I’m glad to hear someone talk about this issue of stall recovery–I haven’t thought much about it, but I’ve certainly experienced it!

    I wonder if maybe there are different types of stalling. I get pretty frequent migraines (1 or 2x/week), and many of them ruin me for any kind of real work for two, even three days. I’ve been experiencing that, on and off, for years, and so I’m pretty good at revving up once I feel good again. If anything I tend to rev up too fast … but there’s so g-dam much to do! (Yes, that’s frustration in my voice.)

    What your friend is experiencing might be another type of stall — one that involves caring for someone else. My daughter has some health issues, and pretty much any day can be flipped on its head at any time. I’ve gotten to be pretty adept at switching gears, but I do have to pay attention because crisis mode can have a delayed effect on my own energy/emotional status.

    Just Wednesday, for instance, she suddenly lost much of her vision. (I know–freaky! We fairly quickly figured it was probably a type of migraine aura, but we’re still not sure.) Although I remained calm and calming throughout, once it resolved I crashed–and I still feel like a limp noodle today. Somehow it can be harder to recover when the stall involves someone else. Maybe because to deal with that kind of stall, I tend to put my own stuff aside?

    I think I cope with critical situations with my daughter by moving myself away from feeling anything that will distract me –“Stay far away from the worst possible scenario; don’t start being sad because she’s going to miss the dance tonight. Focus on what’s in front of you.”–and trying to stay present to what’s going on with her–“What’s your pain level? Are you scared? [long hug] We’re going to figure this out, OK?”. So to be present to my kid and what’s going on with her I tend to ignore at least some of what might be going on with me, which works to a degree. But it definitely has its limits. Still working on that one.

    Not sure any that this has much to do with stalling, so thanks–it helps to try and describe these things.

  2. reasonablesandra said,

    I don’t have any tricks, except “look for the willingness.” I try to make that my motto. If i focus on what I am willing to do instead of beating myself up for what I can’t or won’t. Then I at least recognize it (the willingness) even if circumstances might even still prevent me from being totally there.

    • reasonablesandra said,

      Okay… That was typed out on my cell phone and I’m exhausted so excuse my sentence structure etc

  3. Barbara Barnes said,

    I sure get it. Between my heart stuff and my chronically needing parents the lack of consistency with endurance and strength building is really hard. I don’t have many strategies except to remember that I need to check in with myself and make sure that if I REALLY need rest, I do so, but it is habituated resting I experiment with movement instead. Mercy at each and every step.

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