My Chronic Pain Story

Looking back, I'd often had periods of pain in my life, including living with endometriosis. The difference between then and now was that however painful it was, by and large, I continued on with life. Took a painkiller maybe, missed the odd day of work but functioned well and was getting on with living and achieving the goals I set myself. And then...I went into hospital to have a fibroid removed. It was expected to be day surgery but the anaesthetist shortened the operation because she was concerned about my breathing and the surgeon had left some of the fibroid behind. I was admitted overnight to monitor. I wasn't concerned, in fact I felt pretty good. Went home the next day and had a week of feeling fine. And then I got the tell-tale signs of a UTI. I did what most women probably do - lots of water and fizzy drink and hoped it would go away soon. It didn't. I ended up in hospital with a massive infection that spread to my kidneys and nearly cost me my life. Even after bloodwork came back normal, scans came back normal, I never felt well after that. Mystery pain that might have been bladder pain, no well maybe diverticulitis, oh could be ....I suspect you know how this bit of the story goes. At one point I had been on strong antibiotics for nine straight rounds. I felt awful, everything hurt including my skin and hair. I suddenly couldn't tolerate certain noises and other sensory stimuli, I seemed sensitive to foods I'd never had issue with. I couldn't bend over, couldn't sit at a desk, couldn't sleep well. Simple things like carrying a laundry basket, bending over a sink of dishes, my handbag over my shoulder were now impossible. My clothes hurt me and the sheet laying across my chest at night drove me to distraction. That was some years ago now. There's still no definitive diagnosis -  although fibromyalgia and FND are nominally noted. Doesn't much matter how you label it at this stage - it's just pain.

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At first my doctor said "Well Karen you've just recovered from a 'stonker' of an infection. Give your body time to recover." Except it wasn't recovering. I felt like I was trapped in a body that no longer felt like my own. Fatigue, brain fog, vision issues, digestive issues, neurological issues all set in and my life revolved around a circuit between bed, recliner chair and shower (if it was a good day). The number of days I'd wake up vaguely hopeful only to collapse in an exhausted heap after a shower were too many to count. My world got smaller and lonelier. No one seemed to understand, which in hindsight was probably not surprising because I didn't either. I saw myself as a burden, scared to make plans I might not be able to see through. Alone in my chair during the day or during those wakeful hours in the early morning, my mind started to wander some very dark paths. And that scared me. 

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In fact I was scared of lots of things at that point - scared to eat something that would set off a tummy flare, scared to move in case it hurt me more, scared to hope in case it was all hopeless. And I was also getting angry - why couldn't anyone tell me what was wrong and fix it, why did I feel  healthcare workers were dismissing what was happening to me, why didn't anyone get it (especially some of the very people I turned to for help),  and just why me? I was mourning the life I had led. I was mourning the life I had planned out but now seemed impossibly out of reach. Mourning things I didn't even know might have happened but now surely wouldn't. Pain had stolen my life. Life seemed pointless, there wasn't much reason to get up a lot of the time. 

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Prior to getting sick I'd splurged and purchased a mountain of spring bulbs. There was no way I could plant them all and I didn't want them to go to waste. So one weekend, with me supervising from a chair, Hubby got down and planted them all bajillion of them out. I felt so guilty watching this poor man who hated gardening, digging  while I did nothing - far too guilty to tell him afterwards that there was one mystery packet left over still to be done. I ended up squishing the bulbs into a few pots I had up on benches where other plants had met their demise due to my not having been able to water them. I didn't have a lot (any) expectation they'd grow but at least they were in. One of those pots was just visible from my window,  and one day I thought I spied something growing in it. Surely not? I mustered up the energy to walk down to the pot for a closer look. Yes it was a plant but I had no idea what. That little plant became my focus. Each day I'd walk out to see if I could work out what it was. As the flower started forming and preparing to burst forth, sometimes I'd take a second trip out in a day just to see if anything was happening. And when it finally opened it was the most exquisite Iris.

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Without being overly dramatic, that iris changed (maybe even saved) my life. Somewhere along the way of watching it bloom, I realised I had a choice: I could continue to let my pain define me, or I could take charge of my journey. I chose the latter. I decided that I wasn't going to be passive anymore. I had to be my own best advocate. I started educating myself, learning to assert myself more and taking responsibility for my well-being. It wasn't easy. Still isn't sometimes. But with every small change, I started to see a shift. I swapped my big laundry basket for two smaller ones and wept tears of pure joy as I carried them to the clothesline. A simple adjustment, but it felt like a revelation. What else could I tweak or do differently that would make the impossible a possibility again? Small changes and little victories gave me hope again.

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As my mindset began to shift, I found myself questioning why I'd been put in this position. Could there be a purpose in my pain? How could I turn this struggle into something meaningful? I had coached in a corporate setting in the past and saw how the coaching philosophy might transfer to chronic pain. I'd never heard of health coaching at that point but I knew I wanted to return to study so I could learn to help others going through their own chronic pain journey. I studied Health Coaching, Cognitive Behaviour Coaching, Mindfulness Based Stress Reduction and became a member of the International Coaching Federation. Along the way I also studied independently - approaching everything I saw with a relentless sense of curiosity, hoping to find tools that might make a difference.

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I discovered that while not everything would take the pain away, these tools could help me approach it differently. I learned to listen to my body, to breathe, to recognise triggers, and to distinguish between normal pain and something that needed more attention. I became better at managing my pain - not by making it disappear, but by making it less powerful. I learned that what works for one person might not work for another, and that every journey is unique. I learned if you feel pain, it is real pain. And most importantly, I learned that we all have to keep searching for what works for US, to set boundaries, and take control of our own paths. The only person coming to rescue me was me. I might delegate tasks on that rescue mission but I was the commanding officer.

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I still have daily pain. Some days are really a challenge. But now I have a toolbox of things I can use to help me deal with the pain without a stack of meds. I'm much better at knowing when enough is enough - that fine line on a good day between doing just enough before it becomes too much and tipping over and causing a flare. I have a stack of work arounds so if I can't work at my desk, I know exactly what I can do elsewhere and still feel productive. I've learned to examine myself and see where I use my pain as an excuse and how to turn that around and make myself accountable for achieving big goals again. I have a social life again - and I know how to prepare for going out and doing things so I don't worry about digestive issues or not being able to do an activity. I have reached a point where I can see my pain has led me to a new life, different to before, but arguably deeper and more fulfilling as I focus on my passion to help others on this journey. Thanks to that iris I even discovered a new hobby passion in photography that brings me pure joy.

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I want you to know that I get it. I see you.  I know the despair, the frustration, and the loneliness, but I also know that there's hope. You're not alone in this, and there is a way forward. I've made it my mission to help others on their chronic pain journey - to share what I've learned, to stand beside you, and to help you find your own path to transforming pain and unlocking possibility. You are so much more than your pain.

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