The unpredictability of fibromyalgia

In the last 38 days I have been to two hen parties and a wedding. All three events were wonderful, but all were reminders that if you suffer from fibromyalgia you can never predict your pain.

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In early August, one of my close friends invited 11 girls to spend a wonderful weekend at Wilderness Festival. It was a chance for the girls to get together, catch up, party hard and celebrate the girl we love and her upcoming marriage to her boyfriend of 14 years. It was an amazing hen party, but it was always going to be hard. Three days in a field camping and partying was something I knew I’d struggle with which is why, like the mature adult that I am, I decided not to camp and instead went home each evening.

I did everything right. Everything. I participated in every hen do activity but behind the scenes I was eating properly, drinking plenty of water, taking tablets, resting my legs, packing lightly. I did everything right damnit.

Which is why, when I left early on the first night, legs shaking and vomiting in the bushes, I was so frustrated. I did everything right.

After a good night’s sleep in my own bed and an incredible boyfriend who cleaned the sick of my shoes whilst I slept (that’s love, right?) I went back for day two. This time I was even stricter with myself, and this time the vomiting was even worse. I eventually made it home, the pain in my head so bad I was convinced I was having an aneurysm and the pain in my legs so bad I wasn’t sure how I was still standing. Needless to say, I learnt my lesson and didn’t go back for day three.

I tried so hard to be okay, but fibromyalgia really bit me in the arse that weekend. I was so prepared for it and had such an amazing time during the hours of good health, yet the end of every day was an utter disaster and it ended up being one of the worst attacks I’ve had in some time.

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The following weekend was hen do number two and this time, it was mine. I actually refused to call it a hen do but when a group of close friends suggested a chilled out girls day with no pressure and no stress, I couldn’t say no.

Obviously, me being me, I then proceeded to plan a day of activities starting with brunch at 10am followed by cocktails on a rooftop bar, afternoon tea by the river, painting pottery, prosecco in the park, pub drinks, pizza and an indie club night. How heavenly is that? It’s all my favourite things squashed in to 24 hours!

Once again, I prepared. I planned the day so I could control each part of it, and I thought about my health at every step of the way. This time, it worked. I had one of the best days I’ve had in a very long time. In fact, I was still going strong at 2am, and though I was sat on a sweaty club floor doing my usual style of sit-down-dancing, I could have stayed longer if it wasn’t for the fact we were acutely aware that at 31 years old, we were almost twice the age of everyone else on the dance floor. Oops.

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The next day, I felt good. Achy, but so good. Why was it so different to the week before? Was it the comfort of being in control that meant I was mentally more prepared? Was it the fibro Gods being nice to me for one day, knowing that I needed a break? Was it luck? Was it something I ate or didn’t eat, did or didn’t do? Who knows. This condition shocks and surprises me day after day, and continues to be as unpredictable as it was seven years ago when I was first diagnosed.

To top off a fairly hectic month, last week was my friend’s wedding. In Tuscany no less! Once again, I prepared like hell. I took every step to manage the pain and avoid all my triggers. At 9pm the pain in my hips was so unbelievable that I sneaked away from the dinner table and went up to my room – so thankful that we were staying at the reception venue. I lay down for an hour, read my book and wondered how I would get back up again.

But I did get back up again, I went downstairs and somehow – don’t ask me how – I partied until 5am. FIVE A.M. How? God knows, but I loved every single minute of it. Is it adrenaline that kicks in and keeps us going? Is it strategic, tactical breaks that help us go the distance? I like to think it’s my body knowing that some occasions are just really bloody important and it knows it just has to power on through. If that’s the case, and let’s hope it is, I’ll be pain free for my own wedding – right?