Tuesday, March 9, 2010

Sending up flares

Poor Deirdre. Despite her best efforts to clue me in to her, shall way say, "diaper status" a few mornings ago, her pleas went ignored as I frantically tried to finish the one last task left on my morning to-do list. I know. Shame on me. As soon as I realized the fact that she had been sending me her #2 signals for almost 15 minutes, I felt terrible. Here she was, doing her best to say, "Momma - I've got a live one!", and all I could do was tell her to just wait a second - we'd play in a minute - let Mommy finish putting away the laundry. Ugh! I wish I'd known!

Some of you may wonder why the smell of the thing didn't tip me off, but given the fact that I can't smell, that's never been a good indicator. I knew when I got pregnant that I was going to have to be a proactive diaper changer. I figured I'd just do a lot of checking, obtaining visual confirmation when necessary...but very soon, Deirdre picked up the slack and started sending me signals to let me know the deal was done. Often times, she grabs her diaper and says, "Uh-oh", but if she's running around (or I'm preoccupied), I miss the pronouncement. Other times she comes over and wants to be held...she'll be in the middle of playing, and she'll just stop, come over, and reach up her hands to come up. Again - great for me - I do a quick visual and then we do our little changing routine. In fact, she became so familiar with our diaper routine in the family room (grab the wipes and dipes from the closet, go to the same spot, put down the pad, yada, yada, yada), that if I asked her if she had a poopy, she would, of her own volition, run to the spot on the floor, lie down, roll over on her back, and put her legs up - a signal parfait for this non-smelling mama. I thought I'd died and gone to heaven the first time she did it...but then she continued doing it. It was great. She's grown out of it now - but she's still really good at telling me when it's time. It's just a matter of me picking up on the clues.

But one day last week, I failed miserably. I couldn't figure out why she was getting so whiny all of a sudden. We'd folded the laundry (a task she thoroughly enjoys, although I don't know that I'd call what SHE does "folding"), and I'd wanted to get everything put away and hung up before we went on to play. I noticed she was a little antsy while we folded, but I figured she just wanted to move on to something else. Just let me hang the shirts and then we'll play, babydoll. I warded her off with a few books and toys, which kept her attention while I hung. After a minute or two, she started in again - this time being clingy and wanting to be held. Just a few more minutes, little lady, and them I'm all yours. I'm sure at that point she'd already done her "Uh-oh" and diaper tug thing, but I'd just been too set on finishing the task at hand to notice. I'd finished the hanging, but I was getting greedy and wanted to put away all of the folded clothes, too. Come on sweet pea, just let mommy put away these last two piles of clothes. She continued to whine, and I kept staving her off with this toy and that stuffed animal, thinking that if I could just get two more minutes, I'd be finished and she'd get what she wanted - me and all of my attention. Of course, if I'd taken a minute to interpret the signals she was sending (because she's very rarely whiny or clingy), I'm sure I would have figured it out. She was sending me all of the right signs - all the ones I knew and had responded to in the past - and yet I was ignoring them, one after the other.

Of course, once I checked her diaper, and saw the big ole' mess that poor girl had been carrying around, I felt awful. I changed her, reassured her that her signals were right - Momma was wrong - and vowed never to ignore her very obvious cries for a clean heinie again.

This made me think of the signals my body sent me when I was struggling with lupus. How many times were my joints achy, or my fingers swollen, or my glands enlarged, and I just tried to ignore the fact that they were? How often did my body send me the same signs (actually flares) again and again, saying that whatever I was doing wasn't working - and that I needed to stop, rest, and maybe even get some medical attention before continuing on? And how often did I just slough off those alerts? How often was I too preoccupied with life's "to-do" list to stop and listen to my body? All too often.

That's why becoming more attuned to your body and more accustomed to the signals your body is giving is so very important to living well with a chronic illness. Chronic means continuous, constant...so I believe if we take the time to listen and learn the signals our chronic illness constantly and continually sends us, we can actually learn how to control it better. We can learn what helps, what doesn't, and when we need to call in for back up. That's why keeping a chronic control spreadsheet is so helpful - you can actually see the patterns emerging, and the evidence you need to act will be in black and white.

Of course, it's one thing to be able to pinpoint the signals, but it's another thing to interpret those signals as warning signs and take appropriate action. Don't convince yourself the symptoms will just go away on their own. Don't assume your doctor doesn't want to hear from you in between appointments, if you're flaring. And CERTAINLY don't convince yourself that whatever s/he has to say will be something you don't want to hear. Maybe you've heard it ten times before (that you need a change in medication, you need to slow down, you need to be monitored more often), but one of these days, it's going to make sense. All of the signals are going to point in the same direction, and that will be your chance to do something about your disease. To make it better. To start living well. To stop fighting - and to start living.

2 comments:

Toni said...

Hi Sara,
Check out my blog if you'd like
www.lupushope.blogspot.com
Be Well!
Toni

Sara Gorman said...

Toni - I'll be sure to check out your blog - thanks for stopping by!