One of the pains of fibromyalgia is the uncertainty of symptoms. They vary day to day, and sometimes even hour to hour. No matter how hard I try to prepare for the potential symptoms or fibro flare, they get me every time. It doesn’t matter what the occasion or how excited I am about set plans, I am in constant fear of how my fibromyalgia symptoms are going to be come the day of the plans. Even though I know others feel this way, it’s comforting to hear another’s similar fears. It makes me feel “less crazy”. Sarah, from A Life Less Physical, shares her fibro fears in preparing for her big wedding day, and it’s a feeling fibro thrivers are all too familiar with.Me and My #Fibro #Fears - #fibromyalgia #spooniebloggers Click To Tweet
I’ve suffered from fibromyalgia for seven years and I talk about it every week on my blog, A Life Less Physical. But at this time of year, the pressure felt by fibromyalgia bloggers steps up a gear as we try our best to get the message right. As Fibromyalgia Awareness week comes and goes, the spoonie community comes together, takes a deep breath, and hopes that this year will be the year that the medical community really take notice and recognise fibromyalgia for all that it is. For this one week we have our spoonie spotlight and we’re all shouting and tweeting and blogging our hearts out, so today I find myself asking: what’s my message?
As Fibromyalgia Awareness week comes and goes, the spoonie community comes together, takes a deep breath, and hopes that this year will be the year that the medical community really take notice and recognise fibromyalgia for all that it is.
Well, I could try to teach you, but if you’re reading this then chances are you’ve got your fair share of knowledge already; I could try to advise you, but there’s a lot of that going around this week; so instead, I’m going to confide in you as I open up about my own fibro-fear.
I’m getting married this year. My partner and I have been together eight years, and we’re having the most informal untraditional wedding we can possibly get away with on New Year’s Eve. The girls in my life are giddy with excitement and we spend many an hour discussing bachelorette parties (no thanks), veils (also no), first dances (again, no), and white dresses (you guessed it, it’s a no). But for all the no’s that surround our wedding, there are lots of yes’s too. We’re very excited to be declaring our love in front of all our friends and family, there will be huge amounts of food and drink, a night of dancing and speeches to mark the occasion. But there’s one thing that sits under all of the excitement; a crippling fear that bubbles away under the surface of every wedding-related chat I have. Will I be well? Will the stress of the day trigger a flare-up? Will I have to sit at the side as everyone else dances at my wedding? What if I want to leave early? What if I just want to stay in bed?
Every day, fibromyalgia sufferers spend their time quietly managing their pain. For me personally, I manage everything from what I eat to what I wear to what activities I’m doing that day. I work full time, so I carefully manage my schedule, my transport, my footwear, my break times… you name it, I’ve thought about it. I know how to get from the start of the day to the end. I know what triggers a flare up, I know how to delay a migraine, and I know how to manage my pain when things become difficult.
But once, just once, I would like to go through a day without worrying about whether or not I’ll be able to get through it. I want to go in full of excitement and happiness and nothing else.
So when I sat down and thought about this year’s Fibromyalgia Awareness Week, I realised it was the first time I’d stopped thinking about the little things. This time, I was focusing on one big thing. I know that pain or no pain, we will be married and I will be spending my life with someone who very much cares for me in sickness and in health, and does so every day. But wouldn’t it be nice to know that I could pop a pill or do an exercise know that this time, it would actually make a difference.
As you spend the week raising awareness and sharing stories of loss and success, remember that millions of fibromyalgia patients are fighting hard just to get through the day… but some of those days, well, they’re kind of a big deal.
Sarah writes the fibromyalgia lifestyle blog A Life Less Physical. She’s suffered from fibromyalgia since she was 24 years old and, now 31, she blogs to raise awareness and help fellow sufferers know that they’re not alone. Sarah has recently left her city flat in London and has opted for a quieter, calmer life in the British countryside, where she lives with her partner and two cats.
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