Looking on the Bright(er) Side

A few days ago, Hubby reminded me to try and keep some of my posts light and I’ve struggled for content ever since. Fibromyalgia as a topic does not tend to lend itself to the warm and fuzzies, even though I would normally pride myself on being able to celebrate small achievements or small, special moments. It is particularly hard to come up with a happy or lighter post when you’re in the midst of a flare which I had been in for a week and half, up until two days ago. So, lets think of this as a mixed post-some warm and fuzzy blended with a good healthy dose of the more difficult realities of fibromyalgia.

We have been in a COVID lockdown for the past eleven weeks (….or so. Seriously right now if you told me it was April, I would probably believe you.) Normally Miss Five would be going to preschool three days a week, which would give me time to attend health appointments, do a small amount of paid work and also get some housework done. As parents with small children would know, trying to tidy while those small children are constantly in the house is, for lack of a more eloquent expression, like pooping where you are eating. A parent without fibro would be tired. A parent with fibro after a while can become far beyond that. Pre-fibro, my eye would twitch involuntarily, I would yawn and I would just become fatigued. When I asked some of my fibro peers about their experiences with fibro a couple of weeks ago, to gather ideas about what would be most helpful to discuss on this forum, I was taken by one person’s representation of fibro fatigue. She said “that [fibro] fatigue isn’t the same as being over-tired. It’s like my whole body is cased in cement and my mind is slow and foggy. I’m not choosing to be lazy, but some days it takes immense amounts of energy just to sit up. ” It was the most accurate explanation for the way I experience my own fatigue to date.

It is with this in mind that we then come back to the present. Eleven weeks of lockdown (or so) with Miss Five, I finally started to flare….and continued to flare. A flare nowadays for a day or two is no big deal. I’ve dealt with pain for over five years and far greater than this. But after a week, your mind becomes overactive and hyper-reactive, noticing any small breeze that might pick up and brush against sensitive skin, a shadow passing overhead in the sky which will cause impending pain from an inability to regulate temperature appropriately and so on. It’s an involuntary response from that many days in pain and is completely unhelpful. But difficult to avoid.

So, with my frenemy, Pain, in tow, I was super, super proud of myself, when I had two successful days of “leaning in” with Miss Five. Months back, in early 2021, in the glorious days of pre-lockdown, we travelled to Byron Bay, near the Queensland border. On a day trip to a small mountain village nearby, we sat and drank at a cafe there that embodied a real sense of liberation from mainstream culture. (Which is, for those that know Byron, what it felt like much more in Byron Bay before it became so commercialised!) There, I met an incredible lady, who as a single mum to an only child, explained to me the concept of “leaning in” and being fully present with your child for short periods of time, so that you can then complete other tasks. So, I tried “leaning in.” The issue with this theory with Miss Five is that she expects me to “lean in” for many hours in a row. So we baked a complicated shortbread recipe and nearly forty biscuits later, I was satisfied that I had achieved a good day of quality time with my child. So I celebrated and took the win, as I have become much more adept at doing since I became unwell. And then I flared and rested for hours afterwards.

It’s hard when your body is in that much pain and in the throes of fibro fatigue, to focus on the positives. Really hard. For some of you with fibro, you may still be in those stages as I was at about Year One, when you are so bitter and hurt with the world around you. Whether its with your god, your friends and family who don’t understand or have abandoned you when you needed them the most, or with the care or lack thereof from your health professionals. Whatever it may be-its hard to feel happy or upbeat about much of anything. I don’t know how or when this started to change for me. I think once I started to accept the diagnosis and recognise that this was my life from here on out, I started to consciously try and notice those small moments of pleasure. Because trying to achieve anything as a big picture at that stage was overwhelming. So, I started to be more mindful and present with small joys-the smell of the orange blossoms in the breeze, a meal brought over from a new mum-friend who knew I was struggling, or starting ballet again at the tender age of 35.

I’ll leave you with this to think on. I have a brother who runs marathons. And I am incredibly proud of him. I wish I could run marathons. But I am also aware of my own limitations and know that even if I put in ten times the amount of effort he puts in, I most likely will not be able to run a marathon. Instead, I have been going for hour long walks when I’m well enough. And being able to do that day after day (until a flare stops me), after not being able to leave the house five years ago for longer than fifteen minutes at a time, is now MY marathon. So take this time to consider, what is YOUR marathon? Continue to “lean in” and focus on those moments. It sounds cliched, but like a muscle, over time, that feeling can become stronger the more you try it.

Thanks for reading. Catch you on the next post.

xx Jen – The Girl on Fire.

jenthegirlonfire

Hi! I’m Jen the Girl on Fire. Diagnosed with fibromyalgia in 2016, I started this blog as a way to raise awareness about fibro, share helpful tips and tricks and to allow others around me a space to contribute and share their own experiences with this condition. I am a mum, a wife, a singing and dancing enthusiast and fibro blogger, working hard to achieve new dreams despite a chronic condition.