I didn’t want to write about this or to be in the position to write about this..yet here I am and I am a firm believer in taking what you have and finding the truth and wisdom in it. So I’m going to tell you about something that I keep mostly to myself with only the occasional Facebook status update asking for some healing vibes. I keep it to myself for many reasons, but today the reasons I am sharing it outweigh the personal reasons for keeping it to myself. Today I hope that I can be a mirror for the shame, the shadow, and the light of living with chronic pain. I hope that those of you who live with it will know it is okay to feel how you feel and do what you can do and leave the rest.
I suffer from chronic pain. I have chronic sciatica and there is suspicion that I probably have fibromyalgia as my pain seems to go to other places in my body, I get sharp searing pains out of nowhere, like I’m being shocked, and just a general achiness and I tend to have flare ups of “something”. I have what I call traveling pain. It can be very intense in one area for a long period of time and when it is done with that area it will move to another. In just the past year, I had pain in my heels for months, when that subsided, it moved to severe pain in my head for about three months (I ended up in the hospital) and now my back and hip have been pretty unbearable for a couple of weeks.
Despite this, I launched the sanctuary, I’m doing my art (sometimes live, eek!) and I am immersing myself in the things that matter to me, but I have to tell the truth about how the days go for me because I know for so many of you..it is hard to move around throughout your day and do all that you want to do and enjoy your beautiful life when pain lives in your house.
When Pain Lives in Your House
It is hard to explain what it is like to be in pain all day long at levels of about 6-10 on the pain scale and how hard it is to feel this pain with every movement and every step. It is as if you have an invader in your body who continuously attacks you. And maybe it is because of my abuse history, that this is how it feels for me. Or maybe you feel this too..I don’t know, but I can only tell you my story and how it goes for me.
It feels relentless, angry, hard, stiff, sore, aching, saddening, frustrating and overwhelming and when it gets really bad, all you see, feel, hear, touch, taste is that pain that won’t let you loose. You want to throw your hands up and say I surrender, I give up, leave me alone or fight back and say, what do you want from me!
You wake up and it is there, you go to bed and it is there, it refuses to go away or stop, it becomes a part of you. So much so that if your pain is at a 5 or 6, it’s a good day and you are used to this level of pain so even though you are in pain all the time, you don’t even give it much attention when it is on that level…you only give it attention when it gets really bad. And you can’t help but be in a relationship with it, talk to it even, perhaps try to get it to subside in some way, perhaps reason your way out of it, or pray your way out of it, or research your way out of it. Something. It is an unwelcome resident in your house every day, every moment of the day and sometimes it leaves you alone enough that you can get some work done but it is never quite gone. When it goes away a little, you feel happier, relieved and perhaps you hope that maybe, just maybe it really is getting better and perhaps you allow yourself to hope that one day it will be gone for good. And then when it gets really bad all over again, you feel betrayed. And some of you, may even blame yourself and think about what you might have done that made the pain level rise again.
Your energy is low because let’s face it, pain drains you, the avoidance of pain drains you, the trying not to move too much or move the area or areas despite the pain. There is a lot of compensation physically to avoid the pain which puts a strain on other muscles and parts of your body. Then there is the mental and emotional drain of the thoughts you are having as a result of the pain. The guilt you might have because of all the self help books that say you create your life, that you can heal yourself and here you are back in the cycle of pain, feeling like you didn’t get it right again and if you just had better thoughts, or thought more positively, or just forgave, or just…whatever the book at the time says..then maybe you wouldn’t be in pain.
And then there is the trying to explain it to anyone what is going on with you. How you can’t stay at an event too long, or go for tea at Starbucks because sitting on those hard chairs is torture right now, or how taking a nice long walk is excruciating and will probably leave you feeling worse for days. Walking should make it better won’t it?, they ask and you kind of try to explain how movement makes it worse…but unfortunately they still don’t quite get it, not because they don’t want to, but because they can’t understand really, unless they’ve been there.
This week my daughter asked me to come down the stairs the other day and help her with something…as I came down the stairs reluctantly, I said, “it is painful to go down the stairs” and she looked at me like I had horns on my head. I get this a lot and I would imagine it can be frustrating for a son or daughter, or spouse or partner to constantly hear you moaning and groaning about your aching back. They love us but they really wish we could be more present and more engaged and they probably feel a measure of helplessness too.
And then there is that fact even though your body isn’t working all that well and is in a constant state of pain, your mind is fine. I am as alert as I can be, my creative juices are always going, I have lots of ideas and things I want to execute and lots of fantastic things on the horizon. And even though I’ve done quite a bit despite the pain, I often wonder how much more could I do if I wasn’t in pain, if I had more energy and sometimes I get frustrated that I have to go slower than I would like.
So you find people that understand and commiserate perhaps over your aches and pains or perhaps you isolate yourself altogether because you really don’t want to talk about it..you just want to deal with it by yourself. And you are alone in it.
You’ve gone to every doctor you can think of and some of you have an actual diagnosis and some of you don’t, either way whether you have been labeled as having a disease or it is a mystery, pain is pain and you live with it. You may even go to a physical therapist, or a chiropractor, or a naturopath, or an osteopath or a rolfer, a massage therapist, a pain managment doc, you may even be on meds that provide some relief but leave you a little loopy or a lot loopy and sometimes you get some measure of relief for a while, but the pain soon returns with a vengeance.
Those of you who suffer chronic pain know exactly what I am talking about and probably spend many days living as I’ve described.
The Great Shame
The truth is I don’t want to tell you all this (and yet I do). I don’t want to whine, or complain, or have anyone feel sorry for me, or to be treated any different, or to have people be less likely to do business with me or not take me seriously because of it. And I am sure anyone who lives with pain everyday probably feels the same way. We want to be productive members of society and contribute as much as we can.
And yet there is a great shame that keeps us quiet and suffering in silence. We have parts of us that say you should be better, you are supposed to have it together or get it together already..and being ill in this way is an outward sign that we don’t have it “together” (whatever that means). And so this is how it goes, this cycle of fighting it, of being ashamed, of doing more and more even when we should really rest, of wanting to give up trying to fix it, of blaming ourselves for it (maybe if I ate better, or moved more, or did more work on myself, geez, more?)
Sounds hopeless doesn’t it? And yet I am one of the most full of hope people you will ever meet. This what’s it’s like to live with chronic pain. I’m laying it out as fully as I can because this is like the dirty little secret us spoonies don’t like to talk about or share and when we don’t share, when we stay silent, we suffer in pain alone.
We experience anger, depression, anxiety, frustration, overwhelm, hope, relief, joy, love everyday often very much like anyone else but perhaps a little more intensely because of the pain. But there is something that lives in us very strongly and that is hope.
We hope for moments in which we can get to the art table and complete a page or canvas and sometimes it takes us a few days, but our hope keeps us coming back. We hope to be there for our families, to be able to hold our children and grandchildren. We hope for little things like getting the laundry done without going into a flare. Some of us are young or have been living with this since we were younger. Some of us are older. My chronic pain started at the age of 30 and I am 42. My 84 year old landlady does not ache like I do and walks a lot straighter. Having chronic pain makes you feel different because you are but the spirit of us is the same. Even when we are curled up in our beds, under the covers in pain we have hope and our minds wander to the next beautiful thing we will make or do. We refuse to be eaten up by this, and swallowed up to the point where we no longer exist. Each day we push past the pain in some way to do what we need to do and what we want to do.
Some days are better than others.
What we consistently often do not do enough of..is nothing, is sit in silence, is lay on our beds and focusing on our bodies breathing deeper and deeper breaths into the parts of us that ache. What we don’t do enough of is feel our feelings and really be with them. What we don’t do enough of is give ourselves a break and permission to do nothing but be with our bodies or just do nothing.
The truth is it is hard to go into the fire. To go into our bodies and focus on those parts that ache is going right into the fire..we’d much rather avoid. What I am finding is that in those moments that I can breathe into my back, my leg, my hip, perhaps even move it a little, rocking it back forth and gently as I can…I am facing my pain in a way that I have never faced it before. I am meeting my pain. I am saying I know you are there, I feel you, I’m with you. This is very difficult when we have spent years hating it, but for me this compassionate attention is going a long way.
Lately, I’ve introduced another aspect to this cycle…it’s the do- nothing, or mindless-nothings in between breathing and moving that part of my body. I will spend some time stretching, breathing deeply, being with and then I will go and do another mindless activity or semi mindless (lately I’m watching the whole Son’s of Anarchy series, drawing, painting when I can, playing scramble on my iphone). Why mindless? We spend way too much time in our minds, thinking, worrying, berating, shaming, blaming ourselves..we need to unplug and although formal meditation is an amazing way to learn how to do this..I like the distraction from my own thinking in between being really present.
I am allowing myself the time to just be in it and out of it, knowing that when I can do other things, and put my mind to other matters, I will, but for now in these moments of experiencing pain at a 9..there is nothing in the world that I need to be doing..nothing. I just need to let myself recover and do what I can and when it is time to shut off, sometimes I only need a few days of this, sometimes a week or two or an hour here or there..I can give myself permission to do lots of nothings and practice my deep breathing and being with myself and being with the feelings as they arise and go back to a healthy and fun distraction because the truth is I don’t need to face my pain and be with it every moment of the day. I think we would go bonkers if we did.
For the last two weeks, I’ve challenged myself to 7 minutes of focused breathing daily. I’ve drawn about 20 faces. My shadow is thoroughly enjoying the heck out of the dark side of Son’s of Anarchy. I’m connecting with my lovely peeps of Facebook..I’m facebooking as someone just told me. I’m streaming a live Art Along once a week. I’m present to my amazing one on one clients. I’m taking care of my sanctuary and the beautiful women in it. And that is it…and that is enough.
Even though my ego wants more and has a whole list of things I need to be doing, I’m going to keep saying, “It’s okay Stephanie, it’s okay..do what you can dear girl, do what you can. You are doing it perfectly..you can’t get it wrong.”
I’m going to keep breathing and facing and being with my pain, enjoying my mindless-nothings, dreaming my big dreams and making dents into them as often as I physically can, and living in my beautiful house of hope.