It's not me...It's me.
The past few months have been more challenging than usual as my pain flares have become more frequent. For most of January, I have been blaming the holidays and struggling to recoup. We were finally able to participate in all the things this last season and I really tried to go and do and be jolly.
Some flares are expected, par for the course. My new normal, post 2016 SI-Joint fusion, has brought on occasional flares. Especially when I overdo it, because yes, that will happen — meaning too many scheduled activities in a row — breakfast out, errands, playdate lunch, afternoon volunteer at the kids’ school and then by the evening I have to bail on whatever planned event for it is now too painful to bend or to take steps or sit in a chair. Or the time when I tested the ability of my new abilities, ie, the Spring Break of 2018 fire-pit, that glorious flame-wielding pinnacle of everything I had worked towards. I dug and tamped and bricked. I was laid up a solid day afterwards (saying this with great sarcasm as before this would have broken me in half and if I had managed to live through it I would have been confined to bed for a month).
I was beginning to feel like superwoman. If superwoman could make dinner, give baths, put the kids to bed AND do something a little extra, a little fun for myself, say, sew some curtains. I’m realizing my superwoman fantasy is sounding a bit suzy homemaker, but I have young kids and these are the things I’m doing these days, so…Super Suzy it is!
But things had moved beyond my new found expectation of the occasional pain flare. It was edging back into old normal. It had left me with a desperate need to fix my schedule. To fix whatever was causing the overdo to my it. I kept thinking, it’s me, I must not be striking a good enough balance yet, I still must be doing too much. I went from barely walking to the kitchen to running all over town and now I’ve gone and overdone it.
I must pause to reflect: the fact that my current state of being isn’t heavy metal decibel 110-levels of pain is a marvel to behold. I live in a constant state of pinch-me-mode even on my worst days. For well over a decade, the decent into the pit of pain was a journey I didn’t think I would survive, could survive. Therapy, anti-depressants, over 30 doctors and my amazing rock of a husband has helped. And sometimes, botox. There have been second and third chances given to live my life, not pain-free, but pain-reduced and it has been enough to keep me on this ball. I am THANKFUL for my everyday. Full-stop.
My confusion has left me fighting the return of depression and restarting my search for answers. My gut reaction has been a rebound of withdrawing from regularly scheduled programming without much explanation. Folks with chronic pain know all too well what I am talking about. Utterly frustrated that I can’t get on top of and stay on top my pain. I had been doing so well. I wasn’t overdoing it, I wasn’t overscheduling. I was making sure my evenings were light if I had full mornings. I was keeping a open day if my evenings were going to be busy. I was striking the balance, steady-as-she-goes. I was Super Suzy, able to make dinner, clean-up, give baths, put my kids to bed AND still have abilities for the other things…to sew the curtains, design the clothes, wallpaper Sam’s dollhouse, work on my book, walk the awesome new Green behind our house, ride my recumbent around the neighborhood, run the errands, put out the trash, pick up the donations, go to the movie, drop off the donations, meet my friends for coffee, go on a camping trip, maybe even take a five hour car ride….the sorts of things that folks do who aren’t conditioned to run every single moment of existence under the scrutiny of “if I do this now, can I walk later?”
But I was back to this place. This place of thieves. This place, dark and muted. Where roughly 20% of the entire world’s population really get what this place is like. It was clearly me. I was doing too much. I had to be. For the past six months, Joe, my hubs, and I have had far too many, “You have to slow down, you have to figure a new schedule, you have to make bigger changes, you have to scale back,” talks.
Thing is, I was slowing down. My January ‘19 looks very different from my January ‘18 from a pain level standpoint, even an activity one. I have altered my schedule. If I tried to build that fire-pit today, I would again be broken in half by the 20th brick. Something else had changed.
You cannot un-taste the sweetest, richest, most amazing dessert you have ever had the pleasure to partake. Those few months after full healing of my latest surgery, they changed my everything. They gave me superpowers. I could fold laundry AND put it away. Take that, uh, archenemy of superwoman. I could tackle that fitted sheet against the corner of the mattress, I could lift that sucker up and make that bed. Watch out world! But it was oh so much beyond that. I was present for my children. I could laugh. I was wife again to my husband. The mental ram that is taken up to manage pain is something folks without chronic pain cannot understand, and I mean that with no disrespect. There is no space available for anything else. It is every second of every moment of every action, “what does 4 mins after, 4 hours after, 4 days after, 4 weeks after look like, after said task.”
I know it can be a challenge to empathize unless you are living it or very close to someone else who is. Too much of wellidajusthave judgments gets in the way. It’s natural but not helpful. I have been told more sun, better sleep, more d3 and try planking more times than I can possibly count. What did those plus-30 doc’s know anyway. And I know it comes from a genuine place of wanting to help and be supportive. That is awesome. Sometimes seeing our own limits to a thing is half the battle of understanding how to help. It’s okay to just say, “man that sucks, I really can’t relate and I don’t know what to say, hug?”
My right SI (sacroiliac)-Joint fusion was surgery number six, excluding minor procedures and countless shots. On the skeleton, the SI-joint is in the pelvic girdle (section that looks like a butterfly) that connects the ilium to the sacrum (section of the spine above the tailbone). A few screws, joint movement stopped, and voila, less pain. In theory. It’s never that simple, it’s not as if your body isn’t connected in a zillion ways via bone, muscle, tendon, ligament, cartilage, arteries, veins, blood, cells, I am not a doctor, clearly leaving things out, nature vs nurture, chicken and egg, what did you eat for breakfast. So many factors impact why my joints revolt and yours, perhaps, did not.
This week I went to see my doctor, which it’s been more than a year. I think he comes in at number 27. He’s saved my life more than once. I’m the only Bibby patient he’s seen, I guess not as common as Jones, and he tells me every time he sees my name on the patient roster he doesn’t know if he should leave the country or throw a party. He says I fascinate him. He removed a metacarpal boss from a 17-year, badly healed break. He fused my triscaphe joint. He fused my SI. Then he said, “go forth and live your life and may I never see you again.”
I described the changes in pain frequency as he looked at my x-ray. Then he pointed, never a good sign. Post-op damage to my lower vertebrate from the fusion. It can happen, the stress of a moving joint beside a joint no longer able to move can create problems. Nerve compression and joint degeneration. Where there used to be space in my L-5 vertebrate, there is no more. He ordered an MRI to see where things are, and said he’d call me at home as soon as he got the results. Dr. L doesn’t call folks at home. The last time he said this I was on an operating table three days later and couldn’t hold my daughter without sitting down for four years.
From the time we are born till the good Lord calls us home, we deal with life. This is just more of my life. However, there is a visceral reaction that comes with realizing more surgery, more intervention might be needed sooner than later. Fear, panic, all the worst scenarios arrested me and for 24-hours after my appointment I was frozen in place. I didn’t breathe.
I woke up today with the sun, with the frost. It was beautiful outside. I carried my daughter to the couch as she emerged from the moonbeams that found her in the night, I helped my son make his breakfast. I drank tea with a wonderful friend, as her daughter meowed at my cats in the next room. I love my life and our home. Whatever is coming, I can handle it. We will handle it. My first fusion was survival mode. We had no clue what to expect, had no reference to handle the whiplash and my poor husband had a ten-month old, a four-year old and a deadweight, drugged-up 33-year old to manage. We now live in support mode and because of that, the first thing to show up — that fear, that panic, that worst case — dissipated as the sun warmed the frost.
Turns out it wasn’t me. I wasn’t overdoing it. I didn’t need to hunt for clues in my wacky-off-the-rails schedule. At the same time, it was me. I have found, over the years, reasons to appreciate my beautiful pain. If God gives me more reasons, I know I can handle it. Just might need some hugs.