We came home from Florida and now I understand why people take multiple vacations a year. I’m not a cryer. I’m actually kind of emotionally dry, except I found myself CRYING to sleep, and drinking my coffee in between sobs as I looked out of the window the next morning at the not beach. I’m kind of shocked about this “post-vacation-blues” phenomenon, but I hear it’s a completely normal and short-lived thing. So, laundry goes on.
What’s perhaps made it worse is I wake each morning, my mystery pains creeping back to their previous state of terrible, and I feel rushed to do everything I can- the dishes, wiping cabinets, organizing cabinet contents and drawers, anything that I was physically incapable of doing previous to taking the steroids.
The week we got back to Ohio, I finally, finally, finally met with my rheumatologist and was tested. I’d been waiting two months for this appointment.
I have a debilitating autoimmune disease called Ankylosing Spondylitis.
It’s genetic and there is no cure. It’s a form of arthritis, but not the kind people get because they’re just getting old. In fact, I’ve been (unknowingly) having the symptoms of this since I was 15. It’s pronounced “ANK-yuh-low-sing SPON-d’yuh-lite-us”
Pros: It isn’t affecting my hands, like Rheumatoid Arthritis can, though I do have carpal tunnel that comes and goes. If I lost my hands… let’s just say it would be the quickest way to sainthood for me.
Cons: It affects my spine, my neck, my hips, my legs, my feet. My feet have been the guys who are showing the most outward signs. Other than that, I look perfectly normal and healthy, except that I limp a little, and my usual speedwalking is …not.
I’ve spent the week similar to how I spent the days after Emmett’s Autism diagnosis: grieving in a bizarre way; reading reading reading anything and everything I can about the Ankylosing Spondylitis, connecting the dots of my life that never made sense and now suddenly do, discovering mental turmoil that’s been stewing in my head for years.
“What’s wrong with you? Get up! Why can’t you just GET UP! It’s mind over matter. Choose to get up.”
“Don’t be lazy, just go. Why can everyone else do this and you can’t? You’re a very lazy person. “
“If you exercise, you’ll get better. Yes, you always feel worse afterward, but that means you need it, right?”
“Everyone has problems, everyone has pains. Stop worrying about your own littleness in the world and get things done. Just get it done!”
And then I note the times I’ve been exhausted by MERELY SHOWERING, and watching as I frustrate others because I move so slowly. “Just go, I’ll finish up and meet you there. Don’t wait for me.”
That’s what all of this has been. Im not sad, I’m relieved that it’s not just me. I mean, it IS me, but now I understand why I’ve always been tired, slow Carolyn, and why it’s now worse than ever.
I have cried in anger, weeks ago when everything seemed to reach a summit of hurt and inability, after having to lift my own leg into my underwear; I shook my fists, demanding through tears WHAT IS WRONG WITH ME!? I’ve asked that question multiple times over the years.
So now, it’s like, okay: this is wrong with me…
and this, and this, and this…. and this has been happening to me since I was 15 years old.
So I’ve spent 16 years in varying forms of chronic pain and exhaustion, believing I was just a very, very lazy person, believing I wasn’t doing it right. I was going to confession, confessing my sins of sloth, of laziness, of failing to do my duties as a wife, a mother, a member of society, thinking it’s merely a battle of the will– but in truth, I’VE. BEEN. SICK.
The whole time.
–Now, now, now, cool it.
I’m not a saintly sufferer, here. Yes, I AM lazy. Yes, I have too often failed to be dutiful, to use my time wisely, to be more purposeful in life. I’m well aware of the times I’ve chosen not to do what I knew I had the energy for.
But I’m also sick.
I’m trying to sort out what’s real and whats really been my illness screaming at me all along.
But I’m trying to be more gentle on myself.
Searching Ankylosing Spondylitis on Pinterest brings up a myriad of memes playing to the sympathies of people who suffer chronic pain- and it’s enabling in the sense of allowing people to cling to their own miseries like a teddy bear. While Pinterest actually has a lot more info on ankylosing spondylitis than simply googling, the memes really send out a bitter message for people who suffer stuff like this.
I don’t care if other people don’t understand what my pain feels like, or that I have to recover the next day after grocery shopping, or that I’m confident I’ll never be a soccer mom because I can’t handle the energy it takes to prepare to leave the house except for the weekends (and that’s to grocery shop).
No one can really know how I feel on a day to day basis, and it’s not anyone’s job except a doctor’s. job. (Oh grammar.) —But I do care about forgiving myself for the ways I’ve previously thought I’d failed at being a human being.
AND AND AND! I do care about my ever-renewing understanding about the human person, the increasing compassion I’m experiencing for others, and the increasing hesitation I feel to pass judgement about other people, except concerning spiritual wellness and where the two intersect, of course.
I am of course keeping this mentality from a previous post at the forefront of my mind, offering it up. Trying to see the Heavenly picture in all of this.
I’m in a limbo area: Trying to figure out what is best for me, and still wanting a second opinion. The side effects of the medication I’m “supposed” to take are really, really terrible. Like cancer terrible, or abortifacient terrible, or infection terrible.
I have altered my diet. I’ve always avoided HFCS, and partially hydrogenated oils, and soy, and artificial sweeteners, and low-fat / sugar-free anythings because I know they’re filled with artificial wizardry.
Over the spring, motivated to help Emmett’s gut heal, I learned to make bone broths and ferment vegetables. I make my own kombucha. I don’t drink milk.
I limit my grains, but haven’t totally cut them out.
I limit gluten, but haven’t cut it out entirely.
I eat mostly whole fat goat milk yogurt & nuts, avocados, bone broth meals, some meat, seafood and steamed veggies.
I was taking a strong pro+prebiotic with complimentary supplements, plus a good whole food multivitamin.
I just started codliver oil.
Essential oils, while I love them, enjoy them, and have even been selling them for over a year, are a joke for anything pain/inflammation related.
I’ve been doing this for over a year, and cracked down hard on it months ago… And my symptoms are only escalating. There’s still a lot I could be doing, diet-wise, but frankly, standing in the kitchen cooking and chopping and straining has become yet another thing I hate doing. It hurts to stand, of course. I used to love baking and cooking.
So I feel like I have no options except to try this TNF inhibitor. Which is really risky, in my opinion, and apparently doesn’t last in effectiveness, so I’ve read.
Pray for me?