Notes From A House Frau XIX

Thoughts When The Last Time You Slept Well Was Two Tuesdays Ago

The RRBB cracks me up these days. Here's a picture of him on his activity mat, where he plays everyday for about a half-hour or more before getting cranky and not enjoying the company of his baby-friend the octopus any longer. We've started dressing him in real clothes when he leaves the house as well -- although that's hard to do when sleepers are the best things ever, especially if they have a zipper. And a picture of an elephant. Or feet that are fashioned into "shoes." The whole idea of cuteness just goes into overload on a daily basis in our house. Multiple strangers stop me when I'm out and about and comment upon the beauty of the baby -- and some, without permission, natch, reach in the stroller and touch him. I try not to get annoyed. But it's hard when everything is annoying me these days because I'm so freaking tired.

The being tired isn't the RRBB's fault entirely. Sure he's still waking up once or twice in the night, but it's mainly the fault of the prednisone that when I am up, I can't seem to get back to sleep. Or, I can't get to sleep at all and then there's no point in lying there being miserable -- I might as well get up and read and make more to-do lists than listen to both of the men in my life snore away happily. Oddly, it doesn't make me angry at all to not be sleeping these days, a little grumpy, a little out of sorts, but nothing like the rage that I usually feel after months and months of being on drugs that keep you awake and turn your brain inside out.

Last week I felt a little of the prednisone crazies for the first time. I was a bit down in the dumps thinking that it's been almost six months of really intense treatment for the disease this time around, and I'm over a quarter of the way through my maternity leave. Winter seems never-ending. The snow is still beautiful and we are still getting out and about but my son (my son!) hates hats. He screams when I put them on, screams until he's resigned that I'm not going to take it off, and then screams when his head gets too hot. So I will be very glad when it comes time to abandon his head to the elements and walk around unencumbered by animal-inspired toques.

As I sat up doing a restorative yoga posture called "legs up the wall" in the RRBB's bedroom (because he's still sleeping in ours) reading the other night, yet again after trying to go to bed early, after finally getting the baby down, after my RRHB put down his book and we turned off the light, and I discovered that sleep was like the mystical South for early explorers -- something on the horizon to be expected but never experienced -- I just felt sad. Overwhelmingly sad. And for no reason. Sometimes, I think the trauma and the stress of the disease comes out of my body in sadness -- the ache of my poor beleagured organs can't express themselves and so I just get sad, sad, sad.

It's hard not to feel the pressure of the physical changes of the disease. Hard not to feel frustrated when you see people who gave birth the day after you looking like a million bucks on Oprah (don't make me say who; it's embarrassing enough to be watching Oprah), and you've still got a paunch and your hair is terrible despite a cute new hair cut and you've got a pooch and your stretch marks are still purple and tiger-like and you haven't had a shower in two days because your RRHB is working and you've got the baby and haven't talked to anyone in days and are kind of lonely and it's 2AM and there is no sleep in sight. See, sad.

And I tried, for about 24 hours, to "Change [My] Life in 30 Days" as per a challenge in Chatelaine magazine. They dared me; I tried -- I ate well (followed their 80% rule and then gave up and went right back to eating three muffins and some organic jujubes for lunch), I "scheduled fun," which sounded stupid even when I was reading it, and could just not bring myself to go on a "laughter date." I'm impressed with the writer's ability to come up with 30 ways to change your life, small things to make your everyday just that little bit better, but they were not the long lasting, calming changes that I was craving. They were a bit too Gretchen Rubin (not bad; just not for me) for my taste. So, I've been thinking of my own 30-day challenge, because, of course, what I need is more to-do lists and ways to improve myself during an already stressful time, something to try next month and to keep track of here. Where I'd start -- create a healthy budget and stick to it. The trouble with these "dares" is that they aren't long-lasting. You do it one day and then drop it the next. My life isn't going to be made better or different or less sad by only having the "pick six" things on my to-do list. Seriously, shut up Chatelaine. When did you get so vapid?

Self-improvement seems like such an easy goal when you've got an entire year of not working. When you're committed to examining every aspect of your life -- not only because you're thinking every day of how your life impacts a wee one in your care, but because you never want to take that life for granted. I'm tired of almost dying every couple of years. I'm exhausted from fighting the Wegener's. I'm feeling like I've had my fill of epic tragedy. I don't want to talk about my life in terms of the things that have been denied to me -- because it's so much better to actually think about it in terms of what my life experience has opened up for me. There's a richness in the strength and understanding that comes from struggle. But sometimes, just for a couple of hours, I wish it wasn't all so blood hard all the time.

A year ago, even well before I was pregnant, I never would have imagined I could walk so far and for so long. But, like anything else in life, the more you do it, the better you get, and it seems that the more I walk, the more I can walk. I'd make all kinds of excuses: my hip, too tired from work, too far, let's just take the car -- and now I get angry if I can't get out and get going. A "block" means at least an hour, maybe two, and while I'm doing things along the way, grocery shopping, to-do list attacking, I'm also pounding out the sadness, leaving it a bit behind as I go -- it's the days upon days that I get stuck in a rut, where I am too down to leave the house, those are the moments when the prednisone wins. When the disease wins. When I am struggling to know myself outside of the diagnosis and the bloodwork and the peeing in jugs and the blood pressure issues and the preeclampsia and the rest of it all. If only it wasn't there in my face every time I look in the mirror -- the "moon" cheeks and the thin hair. If only I could leave those reminders behind as well.

Annywaay, I am rambling. The baby's sleeping still and I'm taking advantage and rolling out words like thunder, and not really thinking through what I'm writing about. Perhaps this is the moment to stop.