A few weeks ago when I looked down at my hand while I was typing some email or other, one of approximately seventeen thousand email I send in the average day I noticed this. This is my mood ring. And it is quite clearly 100% black.
I made a joke about it. I may have even posted something witty on Facebook about it at the time but the memory keeps coming back to me on this the seventh day from the day I will be getting my first Ocrevus infusion on Monday, May 8th. My mood is rather black and I’m having trouble shaking it.
This is always hard. Having MS is hard. There is no way around that simple fact. It’s hard to have your life all of the sudden feel nothing like your life. It’s hard to feel trapped in a body, and sometimes even in a mind, you have so little control over. It’s hard to watch other people who have this disease speak of their daily run or their upcoming plan to climb a mountain when you’re over here trying to figure out how to climb out of bed. It’s all hard. I knew it was going to be hard. I didn’t expect having a chronic disease to be fun.
This is so much less fun than I ever expected it to be. I feel like the hours in each day where I am conscious and useful and enjoying life get fewer and fewer by the day. That’s because they do. Today I was awake a total of 8 hours. I will be asleep again soon in hopes of making it out of the house tomorrow to get to work. I can’t even begin to tell you how much I need to go to work. Not for the work. I can do the work anywhere. I need to go to work to see my people. The people who remind me why I can’t give up. That’s why I need to get to work.
I knew this was going to be hard but I didn’t expect how afraid I would be of the concept of hope. I have been playing around with hopeful thoughts all day, dancing around the edges of my broken synapses, luring me into their grasp with stories of fatigue relief. “I felt like a new person!” Said one woman in one article. “I felt my steady downhill regression start to reverse,” said another lady who’s story sounded a lot like mine (diagnosed as an older person, not having experienced what felt like a real remission since diagnosis). Other articles spoke of improvements in walking! Nobody ever talks about that getting better. These aren’t quacks or some crazy web site shilling bullshit stories – this is coming straight to my email box from MS News Today, a reputable source with scientific back up and links to papers only my new friend Alicia maybe could understand.
I have no idea what’s going to happen or how long this will take to kick in. I just know how utterly, completely and totally dependent I feel with each passing day where my hours in a day get shorter upon the idea that I just have to feel better. I just have to. This is no way to live. I can wait it out. I can do positive things like read and rest and listen to my declining body in order to give it what it needs at any given moment – but I am utterly desperate to feel even a tiny bit better.
One night of super hot temperatures in my house reminded me of the long, hot miserable summer I have ahead of me. The summer that seems to start earlier and end later with every passing year. It took one night of that feeling of oppressive suffocation for me to think, “sweet Jesus. I won’t be able to leave the fucking house for months when the real heat kicks in.” How will I get through that? I will get through it but what will I be like on the other side? Who will I be after more time in my house alone and more inability to even play along anymore.
The best most ironic thing? I love being alone. And this disease is ruining that for me too! I read articles that tell me I’m wrong for my love of my solitude. I read about how too much screen time is ruining my happiness and how I’m doomed, doomed, doomed unless I figure out how to get out there and live my life! What if you can’t make it out there? What if you don’t even really want to most of the time?
Seven days to go and I’m overwhelmed with the fear of being hopeful. I want to hope that this is just what it is, and just what I expected it to be…a super shitty time between meds where things were gonna get ugly and I was aware of it, I am aware of it and that’s all it is. When you’re in it, though, when you’re in your fifth consecutive day of sleeping more than 10 or 12 hours out of the day and resting the other hours that you actually are awake because it feels like your body has been up for weeks and weeks running consecutive marathons – you start to get a little wonky. You start to think, “Jesus Christ. What if it’s always like this?”
What if I’m never a marathon running, mountain climbing MS-er who posts shots of her Fitbit on Insta celebrating how many miles she got in today and how many cups of vegetables she’s eaten or how much she’s out here sucking the marrow out of life because, goddammit, MS doesn’t have her! I’m starting to feel like I’m failing at this too. I’ve failed at being a healthy person and now I’m failing at being a diseased person.
Stop right there. Don’t panic. I know what you’re thinking and I want to put your mind at ease. Rational me, the one who knows better, knows this is just the bad part. This disease is full of bad parts and this is just another one. They come and they go and then there are the times in between when you just get on with it anyway and that’s how it goes.
Irrational me, though, the one who gets really pissed off when I can’t keep my eyes open during the day but I’m wide awake at night or gets super overwhelmed when one hot day makes me feel like actual piles of crap or who gets really fucking pissed off that my accomplishments for the last few days – my “vacation” days – consist of actually showering one time and doing three loads of laundry that were mostly pajamas and yoga pants…irrational me is just so over this!
Irrational me is just over the whole goddamn thing. Because she can’t stop thinking, “Oh my god, but what if it doesnt get better? What if this isn’t just the worst seven days? What if it’s just how it’s going to be?”
Rational me will tick one more day off the countdown. Tomorrow it will be 6 more days in the two month flush – one more day closer to something new and hopefully something if not great then at least better than THIS.
Six. More. Days. Six more days of moods that swing from black to blue to bright green and back to black again from minute to minute. They’re just moods. They’re not going to kill me. I’ve been through this before. I can do this. It’s ok to have hope that things will get better.
In fact, it’s important as hell to cling to that hope no matter how silly you feel doing it. Rational me is a smart cookie. I should listen to her more often.
(On the upside…my nails look a lot better than they did in that hideous pic above because I did them myself this weekend and I freaking love my mood ring! Sage Fox Jewelry on Etsy creates cool stuff that gives me joy – even when it tells me I’m in a very black mood. I am a child of the 70’s after all.)