Why I No Longer Disconnect From the World Because of My Chronic Pain

OK, I know exactly how it looks on Facebook. I’m having the time of my life and having so much fun since “giving up” work.

Whilst there is truth in the first part, not everything is all as it seems. This past year I have been dealing with my most challenging days of my illness to date. Just six months ago I was suffering and at my very worst. So I coped by locking myself away from the world, as I had given up all hope from ever having any quality of life again. I didn’t want to see what was going on out there without me. Why would I?

It was becoming harder and harder to accept my new life with chronic pain and an incurable illness. I was despairingly grieving my old life when I was full of energy and could do pretty much anything that I wanted to. It felt like all of the things I once enjoyed in life had been ripped away from me and I was defeated by the belief that I would never be able to do any of these things again. I was destined to be miserable for the rest of my life, stuck in bed forever playing sad songs on my ukulele.

Then, six months ago, a question suddenly burst through me like a magnificent explosive firework. Why should anybody have to miss out on anything in this world, just because of their illness, pain or disability?

Slowly but surely, my thoughts began to change from, “I can’t do that anymore,” to, “I could learn to do it this way!” Instead of giving in to the negative power of my illness, which had utterly consumed me, I decided I would start to embrace the opportunities that present themselves and encourage myself to try. Try to find a way to make it work. If I could adapt to a much slower pace and try to work around the capabilities I have, I could still have a chance at most things.

My first challenge was when I acquired some free tickets for an evening event at a local racecourse for a DJ set performance by Sigma. Some friends had invited me along and I was obviously reluctant. How on earth would I manage standing up all that time during the races, and in a dancing crowd watching a live DJ set? Cue quote from the 90s classic “Clueless.”

“As if?!”

Then, a sudden overwhelming urge to challenge myself took over and was telling me to just try it anyway. The worst that would happen is that I wouldn’t be able to make it there, but why not at least try right? So the goal was set. “I can do this, I can do this if I do it my way,” is what I told myself. Even if I only stayed for half an hour and got a taxi home to go to bed – at least I had would have made it there for half an hour’s fun, right?

So there I was, standing, waiting for the first race with my bet slip in hand. I’d made it there, at least. This by itself was a huge achievement. The pounding of the horses passing by was so exhilarating and the excitable cheers roared louder and louder. Then followed a mix of “Awws” and “Wooos” from the crowd and the sound of betting slips being torn in two all around. I’d been to the races many times before my illness had taken hold, but this time everything felt a little bit more intense. I could hear, smell and see everything as if it was the first time ever. My senses were on fire and my happiness levels were the highest they’d been in months.

I took the chance between each race to sit down further back from the racecourse and rest. I wasn’t missing out on anything as I was too busy soaking up the atmosphere, people watching, admiring all the beautiful outfits.

The time for music soon rolled around. As we reached the stage, the atmosphere was electric and I was pleased that the struggle of my pain written all over my face could be well hidden amongst the crowd. As the music started to boom out from the speakers, bodies of friends and strangers began jumping all around me. I swayed and gently bounced along, hugging myself around my friend’s necks affectionately, but also to physically support my wavering energy. It was incredible – despite the struggle. I felt just like my 22-year-old festival-going self again! As one of my favurite tunes blared out, there was nothing more amazing than feeling the bass booming through my body, distracting me from the usual sensations of my searing pain.

Of course, in an ideal world I would have loved to have stayed in the crowd for longer than 10 minutes, but I knew I had reached my absolute limit and retreated to the grass area at the back to sit, rest and take my meds. There were a few girls with their six inch heels laid in front of them on the floor, so it felt good to know I wasn’t the only one unable to be up there dancing – albeit for poor shoe choices! All I could do was beam with pride of how I had managed to make it through and was ready to leave as the music ended.

This had been a huge turning point for me in my journey and it gave me the confidence to not waste a single moment and began booking in lots of exciting plans with friends. Since then I have been accepting invitations and opportunities left, right and centre!

Whilst I have to remember to rest and pace myself with every activity, it is becoming easier to accept that I may not be able to do things in the same way as everybody else, but I don’t have to miss out anymore!

My illness and pain have not improved. I have to plan ahead for plenty of rest before, during and after activities, and it won’t always be possible to commit to everything – but it’s not about achieving everything. It’s about achieving something, even if just every now and then. Big or small I am learning to praise myself for my achievements and be grateful of every single opportunity to both challenge and enjoy myself.

Please know this: There are always ways to make things work. It’s all about believing in yourself and changing “I can’t” into “I can.” With a little bit of faith and patience, anything is possible.

Follow this journey here.

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Thinkstock Image By: Archv