|Me and Leo goofing off|
[image: Selfie of me and Leo. He is making
a goofy face; I am not.]
We didn't have as awful a time as many, possibly because we'd had our shots, possibly because luck. My mom, who works at a hospital, confirmed that this is not a flu to f**k with (I am paraphrasing), as her facility has already had several deaths. It is not too late to get your flu shot!
Besides being sick, the flu made me grumpy: Even though I prefer to be home, I resent having to stay home. So as soon as everyone else was well(ish) and back to their regularly scheduled, the-hell-out-of-my-space routines, I resumed my own routine. Which sometimes includes hikes. Which, the first time out, sparked a coughing fit that shut me down and almost sent me back home. Scary, but I was fine.
After that fit, though, I kept feeling light-headed. Like I couldn't get enough air in my lungs. I decided to sleep on it. I thought I felt better after a full night with my lovely new C-PAP machine stabilizing the air pressure in my head, but by mid-morning I was feeling light-headed and sub-oxygenated again, and finally went in to see a doctor just to be sure I wasn't traipsing around with pneumonia (as has happened before).
The doctor took all my vitals, even did an EKG (which, gaah, embarrassing; I just wanted my lungs listened to and my oxygen saturation pinged). All my everything was totally fine.
And then he asked me: How is your stress level? I told him I was fine, we were getting over the flu, I have been on Prozac for more than a year and it is useful ... and then I started laughing like a hyena.
He asked why, and I said, "Well, this is just my life, and you have to understand that no one is to blame and I'm used to it, but ... well my son hasn't really slept in ten days, though he's doing OK. And his respite workers were sick for all their sessions too. And his poor dad had a super-intense week at work and powered through even though he was sick, which had me worried. So yes, I guess I have been more stressed than usual lately."
To his credit, the doctor's eyes only widened for a moment before he snapped back into professionalism, and suggested that I focus on full-diaphragm breathing, and also on paying attention to whether or not I was holding my breath (I was), and finally consider exploring other stress reduction techniques. It may be that the wee dose of Prozac I currently take needs adjusting. It may be that it will take a few more days for me to be 100%.
I think a lot of us parents whose kids need significant support have a hard time talking about our own support needs in a reasonable way. While we do not and cannot blame our kids for matters over which they have no control, it is tricky to talk about why we might need extra space or help without people assuming our kids are the problem, or feeling like we're going for a pity grab. Which, that's all rooted in society's shitty shallow attitudes towards disability, so f**k society for making yet another aspect of living our lives that much more difficult for us.
Mostly I'm telling you about my inability to recognize my own physical stress symptoms to remind you to take extra good care of, and go easy on, yourself when things are harder than usual. Because while there are bucketloads of research underscoring how acceptance and understanding reduce stress levels in parents of kids with disabilities, a positive or pragmatic "I got it" attitude isn't always going to be enough when the entire family's support needs intensify. If we're going to be the parent our family needs and also make it through these tough times ourselves, we need recognize when it's time to readjust.
We need to be aware of how being stressed out affects our bodies, how that stress can manifest in weird or seemingly unrelated physical ways, and be mindful of that weirdness not just in ourselves but in other family members, too.
The factors leading to my not-pneumonia can be considered bad luck only insofar as this country doesn't have a social support network that recognizes and properly provides respite for our families. As I noted to a friend, I have a daydream that Sweden's legendary social fabric provides night time respite workers who hang out with people with disabilities as needed, so that both they and their families get the care they deserve. And if the Swedes have no such program, I don't want to know about that.
(We're all much better now.)
(Remember to breathe from your diaphragm.)
Thank you for talking about this.ReplyDelete