Upon reading Rosalind’s post in her last blog entry for Working with Chronic Illness I was so impressed with her commitment to do what she wanted as often as possible, and to manage all the symptoms of her various body issues. It reminded me of how easy it can be to be stopped by our bodies, rather than bring them along with us. She truly models the warrior spirit we talk about in our book. It reminded me of when I’ve stopped going things because of my body concerns and so I wondered if I was alone.
I met with a friend today who is using crutches in the wake of a terrible knee injury. It was a while before she could put weight on her leg, and now she can but not steadily. She wondered if she’d become dependent on her crutches beyond the point of actually needing them. In her case, probably not, but her question was a wise one.
One of my “habits,” solidly formed when in the worst months/years of my illness, was a commitment to do nothing before 9 am. I needed that time in the morning to be comfortably close to a bathroom. IBD sufferers need the bathroom!
One day, several months after my symptoms went into remission, I realized that I no longer needed that practice in my life.Though my flare ups and all the symptoms had subsided, I was still making decisions about what I could and couldn’t do as if there were still in full-force mode. I’d built a limiting box around me that I no longer needed.
To make a longer story shorter (this is a blog, after all), I “swung out” and joined a morning LeTip business leads group that met once a week, with meetings starting at 7 am. I did this for about a year, and it was ok. There were times I had to get up and head to the bathroom when I’d rather I kept going to the meetings anyway. It was a symbolic practice.
BTW, I still prefer to start my day at home, and to start talking to people at about 10 (though I can now be flexible and schedule some things at 9), but the reasons are different. I just like to start my day with some reading and thinking time.
After months and years of living with an AD, it’s likely there have been times when you’ve had to limit your activities. The challenge, then, is to recognize when setting strong boundaries around people, places and/or activities is now a habit, even if not a requirement.
What about you? Do you think you’ve limited your choices or activities beyond the point you needed to? If you did, how did you recognize you’d done that, and what did you do as a result?
Joan
p.s. if you read Rosalind’s other blog, you’ll find out she’s in Argentina! How great is that?
Good question. I find that starting later in the day allows my body to get adequate rest — key to alleviating or heading off any symptoms or problems. The workaholic in me wants to get going at 7:00am, but if I just ease into the day, I find that I can be equally productive and mindful. Having an AD does put a number on one’s body, and if I took care of it as well as I take care of everything else in my life, it tends to reward me with better outcomes.
Cheers,
Marjorie
Marjorie, I read with a smile on my face your description of the tug of war between your body and your mind, at least that’s what I imagined. I also liked the picture you painted by your words, “equally productive and mindful.” I imagine you working in harmony at those times, and I think that’s the best we can all do. Good for you.
Joan
Actually, I struggle with this all the time. I feel like I am in a very strong box and don’t know when it’s safe to come out. I try it occasionally, but I find that 2 times out of 3 I make myself worse. It’s that 1 time out of 3 that is so tempting, of course
For me, the situation is complicated by the fact that I don’t normally feel pain immediately - it often takes anywhere from 1 to 12 hours to register, so I simply don’t know if I am doing something bad for me. But I sure wish I had a way to recognize those times when the remissions are real and I can extend my limits, if only temporarily.
Mary, it sounds like you’re aware of the box, and haven’t let the possibility of pain completely eliminate your willingness to test the limits at those times when the potential reward might be worth the risk. I applaud your courage. I can’t imagine what it’s like not to know pain is coming, but knowing it might.
Joan