Outshining the pain

You are the first thing I think of in the morning because you are the thing that wakes me in the middle of the night. Pushing through that gap between dusk and dawn. Spotting a weakness in my armour you steal your way in so I always start my day thinking of you, rushing to pop pills to silence you, changing plans to keep you happy. You are attention speaking at best, crippling at worst.

I live hoping you will lessen your grip, that I can go out for a walk without wondering if each step is a step closer to awakening you. Some days I manage 15 minutes, other days two minutes is too much.

You force me underground, behind closed doors. But I like it there, I have more control over you in that space. You might isolate me but the trade-off is less pain and fatigue… well usually, you do like the element of surprise after all. 

It’s a constant power struggle. Sometimes all I want to do is slip on a dress and a pair of heels, to pop into town on the bus or march into the office like the old me, grab a coffee on my lunch break. I want to feel like a part of society again, rather than this person who skirts along the shadows.

I want to feel like a part of society again, rather than this person who skirts along the shadows. 

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To so many people I am now Rosie, the girl with MS. But it’s worth saying I’m not ashamed of my MS, it is a part of me but that’s exactly all that it is – a part! I am also Rosie the artist, Rosie the advocate, Rosie the writer, Rosie the wife, daughter, sister. To those who love me, the people who’ve held my hand through it all, I have never been anything else.

It’s funny this existence I live with you by my side. On the one hand you’ve fueled me, you’ve pushed me into finding my voice and using it to shout for the voiceless, you’ve put a paintbrush back in my hand and in doing so you handed me a precious gift, for I’d forgotten who I was until that moment. You’ve brought me closer to my husband, united in our experiences of what happens when our bodies betray us – MS for me, two brain tumours for him when he was a teenager. Haven’t we dealt with enough? Where does it end?

If only they understood the only addictive thing about opioids and pain medication is being in less pain

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Recognising pain

The thing I hate most about you is the pain. People try to understand the MS, doctors give you that knowing nod when you explain the diagnosis, but with the pain it’s different. From “it’s all in your head” to “MS rarely causes pain” and telling me that I must be dangerously dependent on my pain meds (if only they understood the only addictive thing about them is being in less pain) and suggesting I go cold turkey and come off everything. Where pain is concerned, I’ve heard it all and indeed I’ve tried most of it because pain sends you desperately scrambling for that elusive cure. 

I love how it’s accepted that I need medication to control my MS, but yet with pain we’re expected to practice mindfulness and meditation and that if we do it well enough it will magic the pain away. God if only! And the thing is, I place great value in both those acts, for mindfulness and meditation help in the management of both my MS and pain, as does exercise, all of which I’d be lost without – it’s a multifaceted approach. 

But until pain gets recognised as a condition and a disability in its own right, those of us living with its destructive consequences, even when accompanied by a diagnosis like MS, continue to fight for the treatment and help we need and deserve in a world that labels us as addicts, depressed, attention seeking and liars to name just some of the damaging lines that doctors have thrown at many of us without a second thought for what chronic pain is like to live with. 

Until pain gets recognised as a condition and a disability in its own right, those of us living with its destructive consequences, even when accompanied by a diagnosis like MS, continue to fight for the treatment and help we need and deserve

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In an ironic twist, I’m living a far more enriched and happier life because of pain – or maybe it’s in spite of, who knows! 

Indeed, a study in the US on chronic pain reported the following:

“The team’s most compelling discovery, however, is how people react differently to chronic pain. One might expect someone with never-ending aches to spiral into a sea of woe, depression, and inactivity. That can and does happen. But the study revealed that chronic pain ironically confers advantages to some people, fueling more positivity, openness, and extroversion, making them more likely to connect with others.

“For the first time, the study shows that the chronic-pain patient not only is suffering from chronic pain, but to compensate for that and cope with it, they actually develop lots of positive emotional and cognitive properties,” Apkarian says. “Their personality changes, in a positive direction. If only consumed with their pain, they would all die by suicide or not be able to survive. Instead, these people live. Yes they’re suffering, but they’re fighting the suffering.”

Live in the moment

I’ve learned that when I’m in pain it’s okay to be in pain, to just sit with it and know that as quickly as it’s arrived, the wind will change direction and it’s grip will loosen. Sure, it’s hard in that moment not to catastophise about the future and feel like you can’t cope. But the evidence says otherwise, it is staring you in the face – you can and will cope because you have done it before and I promise you that you will be okay. And because of that I know that however hard it may get, Rosie, the real Rosie, will always outshine her pain.