For years, many have described Fibromyalgia as like a toddler throwing a tantrum within them. But to me, Fibromyalgia is more than a toddler, it’s another version of myself.
Fibromyalgia is a completely different experience for every sufferer, but I’ve found that I can work quite nicely with it. When I talk about my Fibromyalgia, I will often refer to it as “she”. And that’s because it is like a person. She’s fiery and temperamental, with an attitude that even I don’t like sometimes. But she’s also compassionate, understanding and so, so fragile. In my head, she’s a small, frail person, unable to stand alone, so lost and so terribly scared.
She needs me to look out for her because no one else sees her. Some don’t even think she’s real. It’s like having the world’s most real imaginary friend. So whilst I look like I’m a perfectly healthy person who’s just being a bore when I turn down invites or leaves early, in reality it’s because my Fibro is tired and I just need to take her home and give her some TLC.
Sure I could try and ignore the tiredness or the pain, but she won’t like it. At all. And she’ll do everything she can you punish you so that you don’t hurt her again. Pain amps up, fight or flight mode kicks in, cognitive function drops, anxiety raises, my patience disappears and she just takes over. I have no control over anything when she acts like that, then I have to try and calm her down.
Ever tried calming down an irrational person who has complete control over your nervous system? Goodness it’s so hard. All the usual tricks I use on a day to day basis don’t even touch the surface. Gym, hot baths, Epsom salts, Tiger Balm, yoga, mindfulness, CBD, massage. It just doesn’t help. So I have to get creative. I’ll up my medication and include my stronger pain killers to numb her a little. I’ll drop my weights in the gym and switch to low weight/high rep so I’m not straining my body too much, just keeping it moving so as to not anger Fibro any further. I’ll visit my specialists ( at the moment I seem to be regularly having chiropractor, sports massage, pain clinic and cryotherapy in the working week) in an attempt to show her some TLC and dial down my nervous system. I’ll avoid staying still for too long so I don’t stiffen. But really I just have to ride it out, try and keep my mindset positive and hope that it doesn’t last for long.
But how she responds when I look after her. It’s like we can collaborate in the most incredible way. She’s opened my eyes to a world where the small things really just don’t matter. I have such limited energy, I don’t want to waste any of it being negative, upset or mad. Whilst she only gives me a certain amount of ‘spoons’ (google The Spoon Theory) a day, she’s taught me how to use my energy in a way that betters my life. Energy spent on a pointless argument with someone is energy taken away from dancing round my room with friends to our favourite song with a goofy as heck smile on my face. I know which I’d rather.
I’ve reevaluated the way I look at materialistic things. Instead of wasting money on stuff that I don’t need, my money goes on experiencing things with people I love. Sure I could have the newest iPhone, or I could go to Italy or Canada or Greece or even Disneyland! Who on earth would pick an iPhone over Disney?! Especially when I already have a perfectly functioning iPhone 7 plus. Materialist stuff doesn’t last, memories do. Especially when they’re with the people who mean the most to you.
I’ve learned to love my body. It’s no secret I wasn’t in the best shape for the majority of my life. I can’t remember not being bigger than everyone else. Even as far back as primary school I remember pretending to be sick and going home so that I didn’t have to find out how many jelly beans I weighed and be compared to the rest of the kids. But when I got sick I was 17st and leaving my bed was torture. Looking after my body through diet and exercise is what healed me. I invest so much time money in taking care of my body. I have treatments, supplements, nutritious food, two gym memberships, spa days, I often travel to warmer countries to help the pain, so. Many. Baths! I may be in pain, but my body has never been in better shape or more cared for.
I’ve worked out at what really matters to me at my core and the impact that has had on my life is beyond priceless. I like to think that maybe I could have found this eventually on my own, but I know there’s a high chance that I never would have have my eyes opened the way they have with Fibromyalgia. My quality life might not necessarily be better because of the pain, but as a person, I’m so much better.
So Fibromyalgia, my little warrior. I’ll always look after you as best I can, I’ll always try to help others see you so they know you’re there, I’ll always try and connect with you, understand and love you. Because you’re a part of me now, and we’re stuck with each other.
Zoë Louise Mason x