I have been in an excruciating pain flare for about three weeks now. You can see it in my face. You can see it in the face of anyone suffering from chronic pain. I don't know how anyone can see an expression like this and still think that we're all faking it. Could they really still tell me, "But you don't look disabled?" I do look disabled if, by disabled, you mean suffering horribly. I am suffering horribly.
I tried to start a little #painface hashtag movement on Twitter. All I succeeded in doing was attracting porn bots. Apparently the term "painface" is super sexy. Knowing that overwhelmed me with visions of why I'm disabled in the first place: rape, child rape. The pain triggers the PTSD triggers the pain triggers the PTSD... and the evils of the world are a part of all that.
It started when I got that cold that everyone was getting. Beau and my step-sons have long since recovered. But the two weeks of coughing hurt my back badly. Still, I thought a few visits to my physiotherapist would get me back to my normal levels of pain and life would go on as usual.
I thought I was on the mend. (Note the red rashes on either side of my mouth though: a sure sign that my body was already under extra strain.)
We had our little non-Christmas Christmas, with presents under the Tiffany tree, beside the shabbat candles, the kiddush cup, and the Aboriginal carving of a hummingbird for healing.
Hummingbirds mean a lot to me, both symbolically and in reality, in their tiny little bodies at my feeders. This feeder is above my daybed so I've been watching my birds a lot, and trying, and mostly failing, to photograph them.
I've also been photographing kitty paws ...
... and kitty noses.
Before the pain got really really bad, I still managed to get out a bit. One fine day, Beau and I went to our local park to cheer me up. Normally, when we go there, I walk part of the way, usually with Beau riding my scooter next to me so I can get back into it when I'm tired out. But on this outing, I knew there was no way I was going to walk at all.
Things were bad and I knew it.
It was nice to see what I think of as my mountains in my park. But it was also sad to know that I used to jog round this park a few times on my way to the gym. Those days are long over.
On my scooter I even don't move enough to generate the extra body heat needed to stay warm in cold weather. That's why you see people in wheelchairs and on scooters with blankets around their legs. It's freezing on these things!
I was feeling very sorry for myself. I wanted to walk and walk but I couldn't. Why not? Oh, right, Smother sold me to pedophiles when I was a kid and they destroyed my back. Yeah, that's a happy memory. It really brightens my days.
I was out in the world but the world felt out of reach.
I do my best to bring the world to me. One day, I dressed up as hummingbird bait, hoping to attract a hummingbird to my hand. It didn't work, but one did fly around my face and chirp at me, scolding me for pretending to be a flower.
(Note more signs of the stress on my body: my blueish lips and the pinched look around my eyes.)
Hummingbirds are very territorial. A wee battle ensued right after I took this photo ...
... which is why I was so shocked when this happened a few days later.
So I went about my days, trying to deny how agonizing my pain was. The pain in my ribs got worse and worse. Bras yet again became torture devices. I stopped caring what I wore or how I looked. When that happens, you know I'm in serious pain.
I started screaming from pain just trying to get out of bed, or when I moved "wrong," or when Beau touched me ever so gently. I needed and still need help with everything: making my coffee, washing my hair, sitting up, putting on my socks.
It was becoming pretty clear that I was in the middle of a major pain flare. Outings were out. Heat on my ribs was in.
In the midst of all this, I learned that my beloved, 97 year old, great aunt had died. I feel terrible that we didn't get wedding photos to her before her death. I know she was looking forward to them. She did know that, since she was just too tired to fly out to our wedding, I'd worn an opal pendant to the wedding in honour of her; she and I were both born in October and we both love opals.
She was my grandmother's little sister and, given how much horrendous abuse there was in my family, she was the only family member with whom I was still in contact. Her mind and memory were completely sharp right up to the end. Whenever I wanted to know something about our family's history -- from when my grandmother hit menopause, to whether it was true that she rode a horse to school -- I just asked her. I'm very sad that she's gone. And it brings up all kinds of feelings about my family that I'd really rather not think about in the middle of a pain flare.
Remember, it was my family's abuse that caused both my physical disability and my PTSD.
It's really no surprise that this pain flare caused the worst panic attack I've ever had. I woke in the middle of the night, in so much pain, I felt like I was being kicked in the ribs by big men wearing hiking boots. My pain was the same pain I felt the times my back was being injured, while I was tied up and tied down, beaten and repeatedly gang raped. I felt utterly trapped in my pain and in my body, tethered, held down, suffocated, helpless, used. I'm still reeling from that. And my body still feels bound.
So I do what I can to comfort myself in the midst of this horrific pain and these horrific memories of the pain's cause. Beau bought me this tiny little doll because it's just like one I had as a kid.
I put her in one of the teacups we used as centrepieces for our wedding, and wrapped her in the embroidered hankie Beau had in case he cried (which he did). Looking at her looking safe and happy is meant to make me feel safer too, even as my body is still brutalized by all that was done to it all those years ago.
Such things do help a little -- but not a lot.
And, before you ask, yes, I am in therapy, and, yes, I am taking an anti-anxiety medication. The problem is that the medication works with my own serotonin, and it's hard to produce enough serotonin when I can't move because my body is in so much pain.
After the wedding, I bought a treadmill. I wanted to improve my walking so I could get outdoors more on my own two feet instead of on wheels. I thought it would improve my strength and my mood, and perhaps lead to some weight loss, though that wasn't my primary goal. I did use it some, but this pain flare hit long before I'd come even close to any of my goals on the thing.
The cats love it though.
It was one darned expensive cat bed! But I will get back to it. That I know for sure. I just don't know when. This pain flare goes on and on and on.
Cats love people who are housebound with chronic pain. We've got the softest blankets and the warmest heating pads.
And we're almost always lying down, ready for a good cuddle.
Creatures are a great comfort. Any spoonie knows that. But nothing is a cure.
When I moved in with Beau and the boys, I said it was imperative that I have a room of my own to decorate as I pleased, and to which I could retreat when I was in a bad way. I've done my best to make my view from my daybed a pleasant one, though it remains a work in progress, especially since we've rearranged the room to accommodate the treadmill.
Stuck in bed, I watch a lot of television, anything to get my mind off my pain. I watch a lot of Law and Order: SVU; in it, unlike in real life, victims of sexual assault are believed, the police care, and justice is often achieved. I like fantasy shows like that.
I also watch a lot of Murder She Wrote, but you knew that already.
And I love my birds. I keep trying to take photos of them but they will not hold still! My hummingbirds at their feeders are as close and clear as your thumb is to you now ...
... but most of my photos end up looking like this. I think I need a new camera.
When I can sit up, I amuse myself by looking at pretty things online, some of which I buy ...
... but am not yet well enough to wear out and about.
My hair is absurd. I know I'm not well enough to go and get it cut. Heck, I can't even wash it for days on end. I try to be amused by the way I look, in my nightgowns, with my jewfro completely out of control. Who cares, I ask myself. It's not like I can go anywhere.
But I do care. It does bother me. It's not really very amusing at all.
I'm getting rashes on my face, I'm getting fatter by the second, I can't wash my hair, I can't cut my toenails, I'm too tired to tweeze my brows ...
... and I haven't even tried to shave my legs. (Beau likes to rub them and say, "Fuzzy!")
I'm in survival mode.
I often eat whatever will go down without hurting too much, and that might not be what's good for me. Pain pills shred the stomach and I've been on the strong ones for a while now.
I've also been drinking red wine a bit. It's a pretty great pain killer but I don't want to rely on something so addictive, so I keep it to a minimum. Waffles, wine, and pills: the dinner of champions. I posted a photo of this meal on instagram and it was a hit. I guess a lot people can relate.
I continue to focus on mammalian comforts like scratching my kitties behind their ears ...
... and cuddling with Beau. That's Beau's hand there. He'd crawled into my single daybed with me to give me comfort.
When I look at my wedding and engagement rings, I know I am loved and this does help. Beau's taken to randomly saying "I love you" several times a day. It's his way of saying, "I wish I could do something to take away your pain." I've also taken so randomly saying "I love you" by which I mean "Thank you so much for all you're doing to help me and I'm so sorry you have to do it." I'm proud to say that during this pain flare I've managed to keep from taking my frustration out on him.
He's been so wonderful. He helps me in innumerable practical ways -- cooking, helping me sit up, washing my hair, doing the shopping. These all actually do help with my pain, though I know Beau feels completely helpless.
He also tries hard to make me smile and often succeeds.
He'll try anything to make me laugh. He succeeds in this too. It hurts but it also helps.
One day, I even woke up to discover that Bear, my certified, level 20 trauma bear, now has his own Twitter account! You should check it out.
Of course, the physical comfort of cuddling is extremely difficult to achieve when even rolling over to hug him makes me cry out in pain. (And, yes, chronic pain impedes the sex life, sometimes making it impossible, other times just requiring a little creativity.) One of the few things that seems to help get my mind off my pain is when Beau plays with my hair so he's been doing a lot of that lately while we watch television in our bedroom.
I keep trying to keep my spirits up. The other day, I was able to sit on our deck in the sun for a little bit. But guess what I saw? This poor little Pine Siskin's foot had somehow been torn off. You can see what's left of it dangling below him on the right. I know he was suffering because he didn't fly away from me; birds fly away unless they're too unwell to do so.
Pain and injustice are everywhere.
Lately, my world is stripped of colour and I'm having trouble finding any beauty in it. This was the shadow cast on our bedroom wall one morning. I dutifully photographed it but I didn't feel any joy from it. When even I can't find beauty in my world, you know things are really bad.
And so we do our best, being kind to each other in the shadow of human pain and cruelty, hoping for relief, and garnering a little comfort when we can.