By Heather Pyne
Every time I wake up with a flare up, before I have even had the chance to consciously engage with “is today a flare up day” my body is throwing warning signs at me. Before I’ve even left that weird state where you’re half awake and half asleep my body is flooded with pain. OK, deep breaths, deep breaths.
I’ve been living like this long enough now to have perfected my response. I wake up lying flat on my back, I’ve always scooted my head off my pillow at some point during the night. So, I lie there like a plank. Breathe in for 4, hold for 4, out for 4 while I repeat to myself that I can do this, that this pain is nothing I haven’t managed before. It always takes a few moments before I can really believe it.
So now that I am vaguely mentally prepped, I begin to move. First, I wiggle my toes. I can hear them cracking as I do so and each movement sends shots of pain up through my legs, through my knees and hips only stopping at the bottom of my back which just feels like a rock-hard knot of numbness. I keep wriggling and the shoots of pain keep happening. At first, I grind my teeth and I have to scrunch my eyes tight shut. Keep breathing, in 2,3,4. Hold, 2,3,4, out, 2,3 4. The pain stays the same, it’s going to and I know it’s going to. I do this not to help loosen joints or decrease the pain this is purely an exercise in tolerance. I keep doing this until I can open my eyes and relax through the pain. It’s going to be there for at least a few days, probably weeks, possibly months so I may as well start accepting it and working with it from the start of the flare up.
Once I can wiggle my toes with controlled reactions I move to the most painful bit, my back and abdomen. I pull my tummy in fast and hold my breath because otherwise I can’t help but shout out in pain. Hold it, hold it, and release. A couple of short breaths because ‘wow that seriously hurt’. Then I push my back down into the bed. This isn’t so much painful but its strange, uncomfortable, nausea inducing feeling. My back has a slightly numb, tingly and tight sort of feeling, it’s incredibly hard to describe. By pushing my back down, I get resistance and proper pins and needles like you get in your foot when you sit at an odd angle. When you get pins and needle in your feet though you can wiggle them and shake them around. Backs don’t really move that way. Repeat, tummy in, *OUCH*, out, catch breath and push back down. Repeat and repeat and repeat. Only once I’ve got myself doing this without having to catch my breath, when I can immediately go from holding my tummy in while holding my breath to breath in 2, 3, 4, hold, 2, 3,4, out, 2, 3, 4, I move on.
The last thing I do is scars over my elbows, wrists & shoulders. When the joints are swollen the skin feels tight and the scar tissue doesn’t have the flexibility the rest of me does. So, I press the scar tissue and move it about to just make it feel a bit looser. It physically doesn’t seem to make a difference but it feels less like my skins going to rip right open when I move the joints beneath it so I do it. Then I get up, slowly, carefully. Roll onto tummy, legs fall off the bed, into a kneeling position while my chest stays on the bed. Arms push, back tries to tighten, push knees and lower legs into the ground. Breathe.
Once I’m standing I know I can master the day whatever it throws at me, yes I might have moments where I yelp out because I move in a way which hurt a lot more than expected but I know at least that I will not be spending the day curled up in a ball crying in agony. I don’t let myself get to that anymore. At the very worst now I can internalise and freeze and breathe in a semi mentally detached state. Perhaps not the best coping mechanism but it works for me.
It’s very different to the morning routine of a lot of people living with chronic pain because it lacks a big medication intake. I still take medication but no longer take pain medication bar paracetamol. I used to take tramadol, nefopam, morphine & pethidine but after a few years these had become barely effective and the side effects were just as hard as the pain. So now, I manage through pain acceptance. I know there’s a point I can push my body too pain wise where I would pass out and as long as I stay below that pain level it’s ok – that does mean occasionally lying on the floor at random times trying to just breathe.
I’m not saying a pain acceptance approach is right for everyone and I’m not shaming people who are dependent on pain medication to manage through the day. All I am saying is that, for me, it worked. I suffered with horrible side effects from the medications, I couldn’t think straight, I was a shadow of myself and now I am not. Opioids are problematic when taken long term. That’s proven, the benefits and side effects have to be balanced out carefully for each patient.
For me, the transition from high dose pain relief to nothing only came about because I fell pregnant. I was not willing to take medication which I felt could harm my children even though medics said it didn’t need to be approached like that. My fear was, that given the level of pain I was living in with medication, how unbearable was this pain going to be when I stopped the meds? I found though that while the pain was worse that I could manage it and that it wasn’t that much worse because my body had grown tolerant to the medication. After so many years the effect it was having was less than when I started on it. That fear was horrible, but I once I had stopped taking it, I quickly found it wasn’t as bad as I expected.
For me, the other big change was about taking ownership for my pain management. I’ve heard so many pain patients saying “Well they can’t just leave me living in pain”. The harsh reality is that often pain cannot be completely taken away and when it can be it the other effects, you’re left with can make life a battle as well. Sometimes doctors will refuse to prescribe stronger pain meds, not because they don’t believe your pain but because they know that doing so opens up more issues, sometimes you reach the top of what’s available and you’ve built up a strong physical tolerance to it so that they really don’t have anything else to offer. There’s not an infinite store of increasingly strong pain medication. By taking a way this feeling of need/entitlement to be pain free I found myself feeling mentally stronger and in greater control of my life than ever before.
The way pain is managed does need to change, every medic knows that but it is definitely not as simple as not prescribing opioids, in fact that would be a completely wrong approach, some people really do need to be on them. The whole discussion needs to be different; doctors need to not approach medication tolerance in a condescending or judgemental manner and need to understand that sometimes, the fear of the uncontrollable pain so many of us with chronic pain have felt is far worse than the pain itself.