Friday, April 1, 2011

We All Get By With A Little Help From Our Friends

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.


WinnyNinny PooPoo said...

I sooooo understand. While in Cleveland once I had to have psychological evaluation in another part of town to qualify for the study I was participating in, so I got over there before dark. Unfortunately I got so turned around because my headache was sooo bad I drove an hour (until the end of the freeway) trying to get the 15 min trip back to my motel. If I was goose I would have flown north in the winter and south in the summer.I hope all the misery was worth it. My Cleveland episodes were.

Never That Easy said...

I'm sorry your tests made you feel worse - that often happens to me as well, but since I don't drive, I always have a ride. For me, it's asking for the time off from watching my niece that complicates things: it's hard for me to say 'keep her home today, will you?' just because I've got to have some stupid tests. It feels like I'm letting her/them down, and since I'd much rather spend the time with her, I tend to put off things more than I should. Anyways - I hope you are feeling better soon, and that your testing winds up being helpful.

Aviva said...

WNPP: Sorry you had similar experience! I think it's good to have confirmation that one of my issues involves dysautonomia, so it was probably a good thing to have the test run again (and the other ones done for the first time).

NTE: Sounds like a similar feeling we share, the desire not to be inconvenient to others, whether it's for getting a ride or saying you can't take care of your niece. :-( Thanks for commenting!

Peter Waite said...

I can relate. So many times I've felt like I wanted to just cling to someone as I went through tests. Without loved ones and friends I don't know what I would have done.