I'm sorry, I sobbed. I'm helpless.
That's where you're wrong, she told me. You're not helpless. You need help. There's a big difference.
--Vanessa, remembering a conversation with her mother, in Jodi Picoult's Sing You Home
So if asking for help doesn't mean one is weak, why is it such a hard thing to do for some of us?
I never liked asking for help, even before I got sick. I've always been fiercely independent. But when you have a chronic illness, and especially if you're a parent with a chronic illness, it becomes crystal clear even for people like me that we all need help sometimes.
Of course, even if it's crystal clear, I still am apparently learning that lesson.
This week, I had some pretty thorough autonomic testing at the local medical school. I'd had a tilt table test at a different hospital a couple years ago and was diagnosed with dysautonomia by my cardiologist, but this new neurologist wanted some more thorough testing done.
I thought the hardest part would be the preparation: I had to stop taking almost all my medications for two to seven days before the test. Since I'm still on a break from pain meds, that wasn't the issue. The big challenge was seven days without Advair and two days without my allergy medicine. I also had to stop taking Nortriptylene for seven days, which meant that my headaches were a daily occurrence and the severity ratcheted up several notches.
And that was all hard. I spent a big chunk of that week sleeping most of the night in my recliner because it was easier to breathe that way.
The testing included another tilt-table test, but also a bunch of other stuff including testing my ability to sense both cold and vibrations in both hand and foot, a sweat test and a couple tests that monitored heart rate and blood pressure during both rhythmic breathing and something called a valsalva maneuver. (Boy, did I think my head was going to explode during the valsalva maneuver; it was the one thing that the technician didn't take time to explain to me ahead of time.)
I was toast when it was all over! I should have made arrangements for Scott or someone else to be my driver. At the end, the technician was very leery of letting me drive myself home. I wasn't so sure of it either, but leaving the car at the hospital overnight (i.e. if Scott came to pick me up) would have been pretty complicated. So I reassured Linda, and myself, that it was OK, it was only a few miles home, and I'd be fine.
I was fine. But I was exhausted and feeling lousy, so of course I got lost, and without my cell phone or a working GPS, it meant I spent almost an hour getting home from what should have been a 5- to 10-minute drive.
Why didn't I ask for help? I'm not sure. Tuesday's adventure definitely made me more aware that sometimes it can potentially be a safety issue if I simply try to push my way through pain, fatigue and brain fog.
It's a lifelong process, I guess, to learn how to be comfortable both asking for help and receiving it. I'm better about it than I used to be, but clearly still have a long ways to go.
I'm lucky, though, that I have a husband who willingly helps me on a daily basis in so many ways. And Ellie's at the age where (most of the time), she's thrilled at the idea of helping. And I have local friends who are supportive, too, as well as my online support community and extended (albeit long distance) family.
Could be a lot worse off! :-)
This post was written as an offering for the April 6 edition of Patients For a Moment, which will be hosted at Possibilism. Entries can be offered through midnight April 3.