Because I Have To, but Also Because I Want To

Praise All Scars - Detail of Mixed Media Collage by Crystal Marie

I'm having a hard time focusing today. I woke in all sorts of pain, went to bed last night feeling this way, but this morning it seems amplified. Like somebody turned the volume up, so I can't relegate it to the realm of background noise the way I normally do. 

This is the whole body, nerve endings on fire, stuff that people with chronic illnesses like fibromyalgia experience. It's especially pronounced on my backside today - back of my calves, my legs, my feet, my poor gluts! Spread across my shoulders, down my back, and oddly across the backs of my arms. My cheeks almost always feel this way these days. It's that tingling pain sensation that I suppose is the nerve endings twitching or spasming. 

Yesterday I skipped all three doses of my meds - starting accidentally with breakfast. When I didn't seem to have a reaction, I decided to try going without for the whole day, knowing that after the holidays, I have to go off of them for at least a week to do the labs the doctor ordered. 

This is the kind of pain you can't escape from, like a tooth ache kind of throbbing and pulsating with every heartbeat. It's hard to ignore when it ramps up like this, and yet it tells me the meds have been doing a better job then I realized. The rampant inflammation I've been working with my doctor to try to get under control for years, seems to be connected to the mast cell activity. At least in part. At least that's my theory now, after a day without meds and winding up this inflamed. 

I keep encountering situations where someone tells me how good I look (compared, especially to where I was just a few months ago), drawing the conclusion with their comments that it means I feel good too. Congratulations are often offered, as a celebration. As a way of saying "You did it! You licked this thing!". 

But even without this flare, I have been responding more honestly, that this illness is invisible. I am never fully without pain or exhaustion. Exhaustion to someone without chronic illness is being tired at the end of a long physical day. Or maybe the result of a single bad nights sleep. Exhaustion to someone who has chronic illness is not the same as being tired. It is the whole body muscular fatigue somewhat similar to what you experience with the flu. You know, like that day when the fever has broke, and you suddenly feel better, and you think you should get up and go to work, but then you take a shower and can barely manage to crawl your way back under the covers. That's what it's like all the time for me. Every single day.

Some days it is more severe than others, like it is today, but it is never gone. When you see me, no matter how I look, that is what it feels like inside. It's hard and it sucks. And every day I have to make a choice to get up and get things done anyway. 

How do you do it? They ask. 

I do it exhausted. I do it in pain. I do it knowing full well I will be on the couch the minute I get home, and in bed hours earlier than most. I do it knowing I will not manage to get up at a decent time most mornings. I do it because every time my mom had a migraine, or was ill enough to need to rest, my dad accused her of being a hypochondriac, and I still have that faulty messaging that flares up as often as the inflammation. I do it because I still need to eat and keep the lights on. 

I've been making a really big deal out of the need to transition from doing so many workshops live, to creating online courses to support myself and better manage my health. I announced that the last big workshop I had in my studio, would be the last big workshop in my studio. I announced that I would not travel to teach much at all next year. But the reality of my financial need does not afford me the fast transition that I was hoping for. 

There is a learning curve involved in filming, editing, and hosting online courses that is taking more time than I'd like to give it. I am getting there. And I am really super excited about the ideas for some of the coursework that has been bouncing around in my head, but brain fog from inflammation makes the learning feel like walking through a field of waist high molasses. 

I'm not sure why I felt compelled to write this today. Other than waking with pain levels on high, and energy levels on low. I start to despair of it all. Someone asked recently how I do it. Today I can see that it isn't so much a how, but a why. 

I do it because it is what I have right now. I do it with the hope that the illness doesn't consume me before I can manage to figure out another way. I do it with a smile on my face, through gritted teeth, hanging on and counting the day down by the hour, until the moment I can fall back in bed. I do it with rewards to myself- like days working in bed. And days not working in bed. I do it, not to try to fool you, or to deny reality to me, and not even just because I have to. Though I do have to, as I explained. 

I do it because I love what I do. I love the teaching, and the art making, and the studio. I love the people there, and the people I meet when I travel. I love these things. They make my life seem worthwhile. They give me a sense of purpose. Without them, I doubt I would feel so motivated to rise. I think this illness has made me even more aware how very much I love the things I get to do. Yes, I do it exhausted and in pain. I don't have a choice, but then again, I do. 

I do it because I have to and also because I love what I do.