Fibromyalgia is a tricky condition and an even harder game to master. There are no fair rules, no egg timer trickling away or cheat cards to give you a leg up, it’s a lawless land with little reprieve. There are no shortcuts and no guidebook; it’s just you struggling to keep your head above water in a sea of nonstop pain.
While you learn to manage the pain, you never stop playing the game – pay to play. You get out of bed in the morning, that’s one point. You brush your teeth, and that’s another. You stand in the shower for ten minutes and that’s three points gone. Getting to work? That’s another five snatched away. You took a flight of stairs instead of the lift? That’s a penalty. You thought you could go on a night out? Batten down the hatches and take away every point because you’re bedbound now.
You see the hardest part of the game is figuring out how many points you have in play. Some days it’s just a handful, on others you might have a hundred but you never know until it’s too late. Every action has a reaction and fibromyalgia is no different, except its response always bites.
People with fibro live their lives on a tightrope. We set out with hope in our hearts and keep everything crossed that we don’t just fall straight off. We change our entire lives to fit around the jagged hole that chronic pain has carved out. Commutes take longer, sleep extends into days and hours are set aside for rest, stretching and an endless stream of hospital appointments.
Fibro changed my entire life. It started at 14 and evolved into nonstop pain when I was 20. At 18, I still had the energy to study for exams and work 30+ hours a week in a busy bar. Even thinking about those crazy hours makes me tired, that lifestyle deserted me long ago.
Nowadays my whole life is a plan. My priority always has to be pacing myself, there are no other options or I’d never get out of bed at all. Every action I take needs to have a reaction plan, as well as a spare.
So please try to respect people when they tell you that they need to bail, take a break or just rest! In the past, I've dealt with countless guilt trippers who made me feel weak or boring because I chose to leave an event early or cancel.
Chronic pain is no joke and unless you’ve experienced it, you have no concept of what it takes to manage it. Trust me, we are not exaggerating when we say that we're in too much pain to get out of bed or to leave the house. We are not bailing because we do not have a choice in the matter.
We don’t cancel because we want to; we do it to protect our bodies from further damage. We don’t take the lift because we’re lazy; we do it to prevent an even more painful future. We don’t leave early because we choose to; we have to do it to ease our symptoms. Every action we take has to be proactive and preventative. We play a very delicate game every day, and you will never fully understand the rules, so please exercise a little empathy.