Just like the so-called “spring,” my body can’t decide whether it’s coming or going. This month I’m back pumped up on the steroids, have finished another week of the gross Septra, and am trying desperately to maintain a little perspective. Everyone I know seems to be in a bit of dire straights. The ups and downs of life are just barreling downhill and not seeming to climb back up, so I’m spending time hugging, giving advice, hopefully being there, listening, and putting my heart out to be held by those who might need a boost or two. Friends are important. You know who you are. I wouldn’t be here without you. I only hope that I can give a little bit of that back to you when you need it.
It’s been a relentless twenty months. TWENTY MONTHS. I can barely manage to type that out. I’m chubby and puffy and feeling more than a little prednisone-crazy these last couple weeks. I’m not sleeping, of course, but I’ve finally found my groove again when it comes to reading, and I’m going to get caught up here over the next few days. We’ve been watching some great TV, and I’ve been enjoying some BBC shows on my iPad as I ride the stationary bike in the evenings. A terrific show called The Hour. Luther, which freaked me out, and then Wallander, wherein Kenneth Branagh is perfection. It’s all to say that despite the sheer stress of the last couple weeks of feeling truly horrible yet again, I’ve managed baby steps in the right direction: biking in the basement 3-4 times a week, lots of books read, lots of time spent with the baby. Now if I could only get my body to cooperate with my mind, and make me healthy, we’d be climbing back uphill in a moment.
The other night, lying in bed, I thought that there’s so little that I can control at the moment. Not my health, not my life to an extent, and not my mind from wandering all over the place and back again. I know I put so much pressure on myself to be doing all of the things that I did before I had the RRBB. To try and keep pushing forward, to keep moving at a pace that I recognize, and I’m failing, miserably. Making myself miserable. Making my husband miserable. All the while claiming to be happy, in a sense, because I have everything in life that equals my own personal sense of happiness. The long list that I made all those years ago: a job that I enjoy (for better or for worse), a rewarding career, a family, a nice house, a solid marriage — these are all things that I value. I would be floundering without them. Yet, I’m feeling dragged down and drugged out, moody and dangerous, unable to pause for a moment and just take a deep breath — and that’s the fatigue of dealing with the disease leeching into every aspect of my life. I can get through the days. But I don’t want to, if you know what I mean.
So, my epiphany.
The big things I cannot control. I can’t will the disease away. If anything, worrying about it, being frustrated and sad, only feeds the fire. I have to find a way to just be in it without letting it completely overwhelm me. I need to make my life smaller. Not bigger. I need to change tiny things every day until I’m feeling better, more like myself. That’s the real tease of the disease — for two or three-odd days over the last few weeks, I felt alive, like myself, not dragged down in the mud, not exhausted, happy and ready to take on the challenges of life with a toddler, a job, a household. And then, bam! I’m back to feeling horrible, ill, exhausted, more tired than I’ve ever been in my life, old, old, old.
So, small changes.
Something everyday that makes me, well, me. Small changes. Big thoughts. Right?
Deanna, you are awesome and I miss seeing you. Maybe we can have a date at the park with RRBB and some books sometime soon! I, too, loved The Hour, but then again you and I are both McNulty fans, right.
Right!!
Sounds like you’re doing all things exactly right!
FYI: I spend a lot of time with my aunt, who is developmentally delayed and a type 1 diabetic who has already lived out her expected life span. She takes insulin 4 or 5 times a day and still experience diabetic seizures and failing eyes site, and kidney disease etc. We’ve been close since I was a kid. She’s 60, and has spent most of her life living in institutions and taking heavy medications. Watching her navigate life and happiness has taught me a few important things about managing my own life. I suspect, although very different, your experience of disease and her experience of dis/ease share some common features that are relevant to everyone. One of the biggest lessons I’ve absorbed from having a family member living with serious illness is that there is no such thing as healthy and together. We are all, eventually, disabled and health concerned. If we are not born with disease or afflicted in early life, at minimum we all do age, and so our need and dependence upon others is critical to our well being. Leaning on your friends and loved ones is appropriate and necessary, and I hope you do more of it at this challenging time. Also, when I am overwhelmed by life, responsibilities, myself, I go small, as you said. I streamline my days, and go hour to hour, task to task. You’ve obviously developed amazing skills for managing your own days. Keep it up! (and by the way, none of my friends with young children feel like their lives are in control, or manageable.) Surrender rather than wrestle with it?
XO