I had a crazy busy week. Long hours. More running around than I’ve been used to. So much going on at work that my head was spinning by the time I got home each night so tired that I’d crawl right into bed to prepare for doing it again the next day.
So today? I’m off today. One of the amazing things about my employer is the number of paid holidays. We are closed the Friday before Memorial Day as well as Monday. I get one extra day without an alarm going off. Four whole days to get my head back on straight before it all starts again on Tuesday.
Am I out running errands or exercising or socializing? No. No I am not. I’ve declared today an official day of rest and the universe rewarded me with a gray, chilly day with which to enjoy the crap out of, totally guilt free. I’d feel too guilty doing this on a sunny day. Me and my creatures are snuggled up with a good book. We may all just stay here until tomorrow morning!
I’m trying to get better at not beating myself up for not being super woman. I’ve said it before and I’ll say it again, my job takes a lot out of me. It exhausts my brain with the constant thinking, problem solving, management, maneuvering and strategizing. It now also tires me out physically from the increased amount of walking I’m doing in my new office space. I’ve also been trying really hard to get back to more of a regular routine. I can work from home and be quite effective. It just messes with my mind and lord knows I don’t need one more thing messing with my broken brain. When I’m there, I’m useful. And happy.
But being there, in my office, has also allowed me to get back to loving my home. My personal sanctuary begins to feel like a prison when I’m cooped up in it by necessity, instead of choice. When it’s by choice, mostly, like today it feels good again. It reminds me that I’m happy here. That this is really one of my most favorite places to be.
I’m beginning to see a light at the end of this long, dark tunnel that I’ve been in since diagnosis. I am beginning to see something that looks like a new normal. It’s not fully realized just yet. I still have to figure out basic things (like how to travel without wanting to die) but the things I love are starting to look like they used to again.
I’m laying in bed, writing a blog post, snuggling with kitties and preparing to do a little reading. It’s exactly what I want to be doing. And it feels kind of great.
The journey you travel after diagnosis is fraught with loss. Everything starts to feel like a loss after all the waiting and wishing to feel better. You start to wonder who’s life you’re actually living now. You start to wonder if you’ll ever just be happy again.
I know better than to think I’m out of the woods. I know there will be days ahead when I feel bleak and hopeless, just as I have felt in the last two years.
There is magic, though, when you start to let go. When you’re not beating yourself up so violently for doing what you need to do, what your body requires you to do. There is magic when you realize that your body isn’t a separate thing from you – it is you, it is your vessel and your home. If you take care of it more (and I’m not talking about eating right and exercising even though I know I probably should) instead of hating on it, it starts to stop hating you back.
After my second infusion of Ocrevus this week, I jumped right back into my old routine. I felt slightly less fatigued. I kept up. I definitely slept a lot to fuel the pace, but I kept up.
Me and my body deserve this day of peace. We’re gonna go now and focus on enjoying it.