Selena at Oh My Aches and Pains, the next host for the Patients For A Moment blog carnival, asked people to blog about the parts of having a chronic illness (or dealing with it) that frightens them, and how they cope(d). (If you're interested in submitting your own post on the topic, visit her blog to get the details, but submissions are due by the end of Sunday, Oct. 10.)
I try hard not to focus on the things that scare me, especially as they relate to my chronic health issues. I'm a worrier by nature, and it's way too easy for my worrying to spiral into anxiety, which of course just makes everything worse.
But I think there are three things that scare me the most:
1. Intense new symptoms. Let me be honest here -- every time I get new, seemingly unrelated, symptoms, I freak out a bit. And since it usually seems to happen in the dark of night, I seem to end up in the emergency room more often than I'd prefer, especially if it's frighteningly intense pain that I can't get under control with pain meds. That's happened twice this year, in January and again in June. The latter ended up requiring my gallbladder to be removed (and I'm so happy that it seems to have been a real resolution to that incident) in late July. The former developed into bloody diarrhea that left me completely panicked, but by the time I had my colonoscopy two months after onset of symptoms, there was no sign of the cause of the problem. Have I mentioned how much I hate unanswered mysteries?
2. Flare ups. After more than three years into my mystery illness, I've noticed a bit of a pattern, although it doesn't seem to stop frightening me when it happens. Essentially, weird things happen each winter/spring, getting progressively worse so my world shrinks to my recliner, my bed and doctor appointments. Many, many doctor appointments, that usually involve a new round of tests. I think it scares me because I never know how bad my pain levels will get and whether it's going to end up being my new "normal." Winter/spring weirdness turns into summer misery (I melt in the heat), and I panic, feeling like my pain levels will never get back under control (and "under control" is essentially wherever my coping levels are, since the pain never goes away entirely and I've mostly given up on the idea that it ever will). Then summer turns into autumn, the weather cools, and either I feel better or I've gotten used to the new normal and I once again feel like I'm coping.
3. I think the scariest thing, however, is worrying about Ellie, and how having a sick mommy affects her life and the way she sees the world. We were headed home from visiting some friends in the opposite part of the city from us, and as we passed through downtown, I pointed out the building I used to work in before she was born. (I never intended to be a SAHM, but the economics of two working parents didn't make sense when looking at the money I'd be bringing home versus the daycare expenses. And, well, I liked it, and it had been a long time since I'd enjoyed that job.) "You used to work?" she asked, with utter disbelief. And like so many of you other sick moms have shared with me, she has no memory of the 2.5 years she spent at home with me before I got sick. As far as she's concerned, I've always been on the periphery of her life.
For the first two, I cope by trying to remind myself to take each day at a time. Yes, when I'm so flared that I can barely feed myself because it hurts too much to hold a utensil and I'm sleeping 18 hours a day or more, it's easy to panic and think "This is how it's always going to be!" And that's terrifying. Who can think about getting through 40+ years like that? So I try to focus on getting through the next 10 minutes, the next hour, the next day. And that helps. A lot.
At times, I'm also a fan of better living through chemistry. I started anti-depressants after it became clear that this wasn't something that would go away in days or weeks, and I've been on them for almost three years now. (I used to think it was inappropriate to use anti-depressants for situational depression that made sense. I mean, who wouldn't get depressed when they get sick and don't get better? It's normal. And yet, I now think that if the depression lingers, even if it's normal and situational and (in theory) temporary, suffering through it doesn't really help anyone. And why suffer if there's something you can do about it?) And when I get the crazies from the periodic Prednisone courses that are the only things that make the pain go almost entirely away, I have both Klonopin, an anti-anxiety med, and Ambien, a sleep aid.
For the third? I haven't really found a way to overcome it other than to continue to visit doctors and undergo tests and not give up on finding a diagnosis and, hopefully, a treatment for my mystery illness. One thing I can do for Ellie is to teach her to persevere, even when it sometimes seems hopeless. I also try to focus on enjoying the moments with her, and not worrying too much about the ones I can't be there for. Like for the trip we took to Disneyland last spring: I chose to go along for the trip even though I knew I'd end up spending the bulk of time in the hotel room sleeping or resting. I very seriously considered saving the money and sending Scott and Ellie to Disneyland alone. But if I had, I would have missed everything instead of much of it. Because I was there, I got to share in the magic with Ellie, and that's something precious. She's never going to be 5 years old and believe in Disney princesses again. But I got to be there with her, even if it was only for small bits of the days. And that's something for both of us to remember and hold on to.
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