Imagine your car has been running a little sluggish lately. It’s older and rundown, but it still gets you where you need to go…most of the time. You kinda wanna have it checked out, but money’s tight and the last time you took it in, the mechanic made you feel like an idiot. So you keep putting it off.
Then one day you’re driving along and you run out of gas. You’re coasting on fumes, trying to eek out that last little bit to the gas station. But you’re also overdue for an oil change, not sure when you last had the fluids topped off, and it’s a HOT day. Suddenly smoke comes pouring out from under your hood. Your car shudders to a stop and lets out the most horrible noise. You didn’t even know metal could groan. You’re still a couple blocks away from the gas station, you don’t have roadside assistance, and you’ve just realized you left your wallet at home.
Think of how frustrated you’d feel sitting in that broken down car. You can’t fix it or trade it in, you’ve just gotta find a way to patch it together once again. How many breakdowns before you get really angry? How many times does this happen before you start screaming about how life isn’t fair?
Now imagine your boss/parents/friends are calling to find out why you’re late again. Instead of coming to help, they tell you to just get out and push the car to the gas station. They send you links to tutorials on changing your own oil and articles on the benefits of electric cars. When you try to explain your circumstances, they tell you you’re not trying hard enough. If you really wanted your car fixed, you’d take their advice.
How long before you dissolve into tears?
Imagine this playing out every month, every week, every day. Imagine your car breaking down EVERY SINGLE DAY and you are powerless to stop it, too broke to afford repairs. What would you do?
Now imagine it’s your body…
This is the reality of chronic illness.
My body is a rusty, old jalopy. My tuneups and oil changes are trips to a slew of doctors and the Remicade infusions I receive every six weeks. Most of the time, this car makes it through. But just like you’ll never know how long that belt will last before it snaps or how long you have before your transmission starts slipping, I never know when a flare will hit me.
Things like stress, colds and allergies, travel, and weather can all trigger a flare. Sometimes I can push through the pain for a little bit, but it always catches up to me. Then I’m the smoking heap of metal on the side of the road.
I do my best to take care of myself as much as I can. I take my oral medication and vitamins every morning and evening like clockwork. I have regular checkups with my doctors. I exercise as much as I’m able, usually walking each day with my little doggy and yoga a few times a week. I have stretches from PT that I do every day to keep the tendons in my feet from getting too tight and to strengthen the muscles in my chest and back to support my breathing. I see a therapist weekly to work on stress management, as well as coping skills for depression and anxiety.
But deep down my body is still rusty and far older than my 33 years.
There is no cure for Rheumatoid Arthritis or any of the other autoimmune conditions I have. There is no fix, I can’t just go out and buy a new body. I must keep patching myself up the best I can, add a few more dollars in gas, another quart of oil.
And cross my fingers that today isn’t the day I don’t end up smoking on the side of the road…
As you might have guessed, I’ve been a smoking heap these last few months. Each time I thought the flare was easing up, I’d be thrown back into the thick of it, beaten back by overwhelming waves of pain.
I’ve worked hard to be gentle with myself, to practice self-care, and to rest like the doctors tell me to. Unfortunately, that impacted my writing a great deal. If my wrists were up to some typing, the rest of my body was screaming from sitting upright. If I could sit up, my wrists and arms hurt from trying to type. So I cut myself some slack and looked for release in other creative outlets as much as possible. And I napped. A lot.
I’m still flaring, still fighting back waves of pain and swollen joints. I talked with my rheumy about my options and this week I took my first dose of Methotrexate. It’ll take at least six weeks before we’ll see how it helps me, so I’m on continued orders of rest through the holidays.
I’m determined to not sink into the dark that so often accompanies a flare for me. I’m crafting when I can, snuggling with my doggy often, and coloring my cares away when my hands allow it.
I’d like to say I’m back, but I know putting expectations on myself only furthers my frustrations when I can’t meet those expectations. So I’ll simply say that I’m here. I’ll write when I can and rest when I can’t. If you’d like to see what I’m up to when I’m not writing, check out my Instagram. My smart phone has been my constant companion lately, and I’m often posting pictures of my projects, my doggy being cute, and the times I say “Eff the pain!” and go out with my husband.
Because sometimes you have to live, no matter how beat up you feel.
**My undying gratitude for all your support, love, and patience. I hope to be back to me soon!