Posted in "Daily" pages Life

Oversharing

October 4, 2013 - 6:34 am

This is not going to be a happy fun fiber post or a delicious recipe. This is perhaps self indulgent whining about managing chronic pain. Apologies in advance and please skip along.

 

No really, I won’t be offended. I’m just at the end of my tether and need to write. Look at the picture, know that’s the place I ended up after writing this. I live here, surrounded by beauty, with a warm and loving family and a comfortable life full of things that bring me joy. I’m ok, and I’ll be ok.

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I have managed chronic pain for most of my life. I broke my neck when I was 12, though I didn’t find that out until I was almost 40. I had an MRI a few years ago to diagnose pain and numbness in my left shoulder, arm, and hand, and the MRI turned up two badly compressed vertebrae and numerous damaged nerve channels. The doctor said it looked like an old injury, most likely from childhood. And I knew.

There is no cure, only management. I have arthritis slowly filling the nerve channels, irritating the nerve sheaths, causing them to get inflamed. The pain I feel has nothing to do with my hands and arms, it’s just a side effect from the nerve in my neck slowly getting squished. I could get steroid injections but while that would help in the short term, in the long term it would cause tissue degradation and other problems. I have to deal with this for the rest of my life, so until there’s a treatment option that can actually reverse or repair the damage I just live with it as best I can.

As a child I rode horses obsessively, almost continuously. I woke up in the morning and fed my pony, sometimes riding. Came home from school and went for a ride. Frequently went to my trainer’s house after school for lessons and riding. I wasn’t riding easy, calm, well broken horses. My trainer worked with reclaims and my first pony definitely qualified; he could buck more or less anyone off, and did regularly. It was a good ride if I didn’t land on my bum. The first time I managed to ride him through one of his tantrums I’m not sure who was more surprised, me or the pony.

Generally I landed well and bounced right up, but occasionally I did not. I had multiple losses of consciousne

ss, the first of which I remember was when I was 8. Given what we know now about repeated brain injury I worry. But that’s borrowing trouble from the future. The trouble that has come back to pay its future dividend was one specific fall. 

I had a new horse, who didn’t buck. No, she spooked and bolted when she got nervous. I took a fall, and landed badly on my head and shoulders. I thought I had just wrenched my neck; I mean, I could move my fingers and toes so nothing could be broken, right? I got up, dusted off, got back on the horse and rode home. 

That began a period of continuous headaches and insomnia. I couldn’t lie down to sleep, I slept sitting up in an arm chair with my head propped so it didn’t fall over. This went on for months. My mother told me I was being “dramatic” whenever I complained about pain or illness, so we never went to the doctor except for routine physicals. In the middle of this we moved out of state. The pain went on and on, for well over a year. Nothing helped. 

Freshman year of high school my morning class teacher decided we needed to start the day with Sun Salutes so we stopped falling asleep in her class. Several of us got into it, and soon she was holding longer yoga sessions at lunch. I began my yoga practice at 13. Slowly my pain faded. 

That teacher, and forgive me I can recall her face but not her name, was also managing chronic pain. She used movement and breathing exercises to, as she put it, notice the pain and let it go. Pain is information, she would say. It’s your nerves checking in with your brain to make sure you’re aware something is off. If you already know what’s off and have done what you can to ease it, there’s no reason to hold on to that information.

She believed tight muscles were the body protecting itself. She would say to herself and to us at the end of practice when we were lying in Savasana, “It’s ok to be open now, it’s safe. Let the earth carry you, you won’t fall off.” We would practice deliberately clenching a muscle that was restricted, and then letting go. Feeling into ourselves to notice what our pain was protecting, and making it safe to let go. 

It comes and goes in waves. I’ll go months sometimes without a flare-up. and then get struck suddenly by pain that keeps me from sleeping and makes it hard to function. Or no pain, and my hand will just go completely numb. Other times I’ll feel it build up over days or weeks. Those are the worst; it’s like hydroplaning in a car towards a tree. Increasing levels of panic and desperation as I watch the tree coming towards me and try to get control to avert disaster. 

This flare is one of the latter. I haven’t slept well in over a week. Two nights ago I managed a good night and felt rested yesterday, which was wonderful. I had an incredibly productive day, by recent standards, and went to bed with the expectation that I was on the mend.

Today, though, is not starting so well. I woke at 3:30 with my whole left arm numb. I tried doing gentle openings in bed to get sensation back, but no luck. I got up, worked through physical therapy exercises, then yoga, and finally spent some time on the foam roller, and now have curled up on the couch with an ice pack on my neck and fingerless mitts, hot tea & a rice bag to compensate for the cold. It’s chilly this morning, heading into winter.

I could say I have no idea what caused it, and honestly I’m not 100% sure. I suspect it’s the repetitive motion from the fleece prep I’ve been doing for Spinzilla, but I’ve been trying to be mindful about taking lots of breaks. I did none of it at all yesterday, in fact I can’t think of anything yesterday that should have aggravated it. I sorted and washed a fleece, built a fleece drying rack (which is the blog entry I expected to be writing today), played with the puppy, tidied the house. I actually did my yoga and PT yesterday, something I’ve been sporadic about since the summer. I went to bed feeling accomplished and happy. 

I thought I was over this hump, but instead it’s worse, and it’s gotten into the realm of exceptionally bad– worse than it’s been in a year or so. It’s hard to be creative when I hurt like this; I can’t separate from the pain right now. It woke me up, kept me awake, and now is a continuous roar. It hurts to move, and hurts to sit still. Nothing seems to be working to calm it down. I think that’s why I wanted to write this. I thought I was on the mend, but I’m not. I feel… “betrayed” isn’t exactly the right word. Frustrated, disappointed, angry, resentful. 

I don’t talk about this, ever. People I have lived with know I hurt sometimes, but it’s just not something I talk about. Unless it’s bad enough to impact my activities in a noticeable way they generally don’t even know when it’s flaring up. I don’t find sympathy helps me manage it, and pity or well meaning attempts at accommodating it make it worse. What I need to do, what works, is to avoid things that trigger it, do the exercises that help manage it, and otherwise keep from focussing on it. Distraction, mindfulness exercises, and deliberately not noticing the pain is what I need. Sympathetic, well meaning, helpful people are, ironically, the opposite of help. So I don’t mention it.

Except days like today when my arm is on fire from my neck to my fingers, when I’m so tired I tear up thinking about it, when I’m frustrated that there are things I want to– need to– do today, and they are unlikely to happen. Days like today I want to hit things, I want to scream and rant about how unfair it all is. Unfair. There should be a way to fix this. There isn’t. I have to adjust, to manage it, and today I really just don’t want to. I want it not to be, but that’s not ever going to be an option. 

I have to relax, to accept, to be where I am, and I know this, but I’m really truly deeply pissed off about it this morning. 

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Comments

Kim Smith

October 4, 2013 6:34 am

Well, I hope you’re feeling better by now, but if not, I’m going to tell you the same thing I tell myself when I have a bad run & just want to stop – “Suck it up, Buttercup!”

Seriously though, I understand. Mine’s nowhere near as bad as yours, but I’ve been there. While the 3 disks in my lower back don’t appear to have deteriorated any further then they were 15 years ago, it’s an entirely different story in my neck – and I don’t even have a great story about falling off a horse to explain it, just the ravages of years of not enough movement, too much weight, too much time on my ass at a desk & bad movement/posture patterns. Some days you just have to wallow – roll around indulgently in the pain and frustration and anger and fear, because you are human and not an unfeeling machine. Most of the time, I’m a buttercup &, thankfully, I can usually suck it up and keep on going. Sounds like that’s what you usually do, too (along with all the healthy stuff to mitigate the need to suck it up or wallow).

Hang in there! The sunset (sunrise?) is gorgeous!

Jennifer Leigh

October 4, 2013 6:34 am

Yup! usually it doesn’t slow me down at all. This morning it was intense, though. “Wakes me up from sleep” pain is generally over my ability to just suck up; it interrupts my ability to think and do things effectively.

It’s better now, and I’m getting on with my day, but I can feel that it’s still irritated. Doing all the right things to (hopefully) keep it settled down so it can heal enough to not be in my way. 🙂

Barbara Grissani

October 4, 2013 6:34 am

I am so sorry to read this and I am so sorry to know this is your physical life. I have lived one like this and continue to be very conscious of arthritic joints. You know you are much younger than I, so you will suffer more. I am very sorry, and I miss you. -B.

Jennifer Leigh

October 4, 2013 6:34 am

It’s ok. The intense part is mostly over now, at least for today, and hopefully if I just take it easy for a while I’ll be back to normal. It doesn’t slow me down much on an average day, just when it flares up like this.

Miss you!

Deborah Robson

October 4, 2013 6:34 am

A friend of mine knows an absolutely superb pain doc in Texas. It took her years to find him, and the results have been what one might call a miracle. I’ll drop you an e-mail. It can be good to know where resources are, even if they are not convenient: maybe that knowledge leads to something closer.

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