This blog first came about in 2011 because I was a parent with young kids, and I found that much of the advice about managing chronic illness didn’t apply to me. I couldn’t pace, exercise, or sleep like I was told to because my kids weren’t (and still aren’t) like the TV children who magically disappear whenever their parents have to deal with a problem. When my kids were little I had zero control over my schedule. As my kids have gotten older my life became more manageable, and taking care of myself has gotten a little easier. However, now that my kids are 8 and 11 year old I’ve entered a new stage of life. The stage that involves an insane amount of school and sport events that I have no control over.
This is what a do with my evening four times a week. I get to sit on the bleachers watching my son’s practice for an hour each time. Needless to say my body does not enjoy the experience, but I don’t really have a choice. Yes it would be nice if I could practice pacing and not have to sit through swim practice so much, but as I parent I sometimes have to put my child’s needs before my own. It just so happens that swimming has been amazing for my son’s confidence and social skills, so my butt will continue to suffer through his practices until that changes.
When life gets in the way of pacing
It is incredibly defeating to be continually told the only way to adjust to life with chronic illness is to rest when your body tells you to. Because unfortunately for many of us, we don’t have that much control over our lives. While what complicates my ability to manage my health is parenting, for others it may be their job, taking care of other family members, or any other life circumstances. So what do you do when you can’t prioritize your health and practice pacing in a way that would be beneficial as you’d like?
For a long time I felt like I was a failure at having a chronic illness. I mean, if everyone says pacing is what I need to do, is there something wrong with me when I can’t do it? I almost always know when my body needs rest, and I almost always know when my body is about to crash, but there isn’t much I can do about it. What I’ve learned though is that when I crash because I wasn’t allowed to rest when I needed to, it’s not my fault. It’s not my fault that other people need me, and it’s not my fault that I couldn’t manage my illness well enough to keep me from crashing. Just because I crashed when I overused my body does not mean I’m a failure.
How to re-imagine pacing
The thing to remember is pacing is all about how everything you do has a cost. Just getting out of bed in the morning and getting ready for the day has a tremendous cost, and it’s not a cost that typically can be avoided. Because it costs me a lot to drive my kids around and attend all their various events, I prepare myself to deal with that cost. As much as possible, I like to organize my calendar ahead of time so I can know what is coming up each week. If I know my Monday, Wednesday, and Friday are going to be crazy busy I try to plan activities for Tuesday and Thursday that might be more restful. That way I know if I can just get through Monday I will have time to rest the next day. If I know I’ll have a rest period coming up, it helps me to survive the period where my body telling me I need to stop. This is not the ideal way to pace, but we all work with what we have.
I’ll be honest, I think resting is boring so I’m not very good at it. By nature I’m a person who likes to keep busy, which isn’t very conducive to chronic illness. However, over the years since I’ve gotten sick I’ve learned that I have to practice my modified version of pacing if at all possible, but if I can’t do it I try to remember to move on and not feel guilty.
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