The other side of chronic pain

I write about pain a lot. I wouldn’t be much of a chronic illness blogger if I didn’t. But in the last nine weeks, my body has been through the worst flare I have ever experienced. I have spent 74 days stunned to silence by the amount of pain in my body, whilst similarly marvelling at the amount I’ve been able to carry on as normal, despite everything being so much more difficult.

When my chronic pain symptoms flare, I often turn to the blog and write about all the feelings. I talk about sharp pains and dull aches, numbness and hypersensitivity, migraine and vomiting, but I rarely focus on all the other things that accompany physical pain. Now I feel like adjusting the spotlight and writing about the other side. Sadly, pain tends to dominate everything and so I haven’t been able to write for about two weeks – and this post has taken me about a week to put together.

When you’re living in a world of pain, there are certain things you do to get by. You cut corners wherever possible to make the day that little bit more manageable, and you indulge in the things you know will help. Over the past two months I’ve spent obscene amounts of money on taxi fares to avoid unnecessary walking or public transport; I’ve bought thermal leggings and long sleeve tops to try and protect my skin from rough textures and keep my bones warm; and I’ve had two aromatherapy massages to give my body a little TLC in dark times. In short, a flare up is expensive. I dread to think how much harder it must be for those who can’t afford a taxi or an indulgent massage.

In the last two months I’ve also drunk more wine and bought more comfort food, I’ve stopped any small amount of exercise I was previously managing, and all the things I know I should do have gone straight out the window as I just stick to the basics to get by. I’ve gained some weight and my skin’s deteriorated; I feel like it’s glaringly obvious that I am unwell by the lack of colour in face, the lack of effort I can be bothered to put in to my appearance and the nervousness with which I carry myself – prepared for a painful nudge by a stranger or over-enthusiastic hug from a friend. But, from what I hear, no one has been able to notice anything different. From the outside, everything is the same.

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I’m currently switching between three different medications, none of which are doing anything good. They’ve been responsible for my vomiting during a work meeting and vomiting on the underground (a new chronic pain life low), cancelling plans with friends and a full day in bed when I should have been eating roast dinner with my in-laws. At no point does this hellish concoction of meds dent the pain, but the ever-popular ‘let’s wait and see’ approach is advised by my GP.

I count myself incredibly lucky that I don’t suffer from depression alongside my flare ups. I feel slightly anxious about everything, but only in a slightly melodramatic sense – I worry a long day at work might result in my death. Something like that. It mainly makes me want to stay inside, wrapped up in a warm room of cotton wool balls until I feel strong enough to go outside again. Of course, that’s how I feel but it’s not what I do. What I do is get busier than usual, working in a different city one day to the next and making extra plans with friends every other day. Apparently I’m even more of a moron than usual when I’m in a flare.

Above the cost and the anxiety and the time spent with my GP, all of this is just exhausting and frustrating. Deep down, I know I’m not approaching it in the right way. Flares are a common part of the fibro cycle and as chronic pain patients, we’re used to them. Even so, grinning and bearing it and hoping it will pass is not the answer. We all know that. So today marks the start of a new approach; I will eat healthily, I will exercise mildly, and I will rest. I will rest at every given opportunity until my pain levels are manageable once again. If the meds happen to do their job during that time then, bonus.

Let’s wish me luck.