A recent Roller Derby training session had left me needing crutches just to get around my poky little flat; and, no, there was no injury involved – merely a compounding of the pain that had been gradually increasing over the previous few days.
Usually painkillers, sleeping pills and rest would allow me to return to ‘my kind of normal’, but this time the pain was persistent. Two days later I was still hobbling and exhausted. Eventually noticing that I had barely left the bedroom for most of the weekend, my husband came to keep me company on Sunday afternoon. As I struggled to find a comfortable position as we watched the remake of Pete’s Dragon on the laptop, I muttered the words ‘kill me.’ A sharp jab to my upper arm made me realise that I hadn’t spoken as quietly as I had initially thought. Once the film was over, my husband returned to his duties in the mini ‘studio’ and I turned to a playlist for solace.
As I lay there, tugging at the frayed edges of the Kinesiology tape that was holding my knees in place, I got a pleasant auditory surprise. This wasn’t just a song I loved, it was one of those songs that I always feel pressed to listen to on a loop – a song whose delicate coloratura is so tangible you can almost taste it.
In a sudden rush of emotion I was reminded that when it seems as though the illness is doing nothing but taking, it could actually be clearing a path. That is what compelled me to consider some of the upsides of my disordered life.
1. Living In The Present.
I mentioned in my very first post that one of the things I missed most from my old life was my own ability to be spontaneous. I was wrong. Spontaneity is all I have – it’s the ability to plan ahead that has atrophied. We are constantly bombarded with guru-lite sound bites telling us to ‘live in the now!’, but for those of us with chronic and fluctuating illnesses we can’t help BUT to live on the ‘now’, as we can never tell what tomorrow (or even the next couple of hours) will bring. The body that feels relatively okay at this moment may soon lose the ability to move its limbs correctly or support its own weight. That isn’t to say that we’re completely hedonistic, rarely considering the consequences of our actions. On the contrary, we often know all too well the steady hand of ‘cause and effect’; but if I have both the time and the energy to go skating, why would I postpone it when experience has shown me that ‘well enough today’ doesn’t always translate to ‘well enough tomorrow’. Putting something off until a later date is a luxury many of us left behind a long time ago, which is why…
2. It’s Easier To Separate The Wheat From The Chaff.
Some things in life are necessary – like laundry and vacuuming. But some things are, as we would say in south London ‘so extra’. If you plan to wear an entire basket full of clothes, then by all means, iron a basket full of clothes: but if the majority of those items are going to get shoved into a wardrobe, only to be pressed again when needed, is it really necessary to expend all that energy at once? Being forced to live in the ‘now’ also makes us realise how precious and limited time and energy really are. Utilising our limited resources to increase our levels of joy is a vital act of self-care. The laundry still gets done, the floor still gets vacuumed, but the books are all over the place and the desk looks like an explosion in a paper factory – because I decided that my stamina could be put to better use increasing my happiness quotient at a movie theatre. Like I’ve said before, even in a poorly executed Alien ‘prequel’, Fassbender is worth all the spoons…
3. Max Jury.
“Wait a minute, your royal highness – isn’t that a little specific?” Well, allow me to elaborate…
In the opening paragraph, I mentioned a song that shook me out of my self-pitying state – that song was Max Jury’s ‘Christian Eyes’. But if I hadn’t been so, so ill, it may never have entered my orbit – it took a perfect storm of events for that song to cross my path, and my illness sat firmly at the centre. Long before I was officially diagnosed, my husband could clearly see how difficult and draining it was for me to travel home from work (it’s actually a lot easier to travel home during rush hour than at ten or eleven at night, which was generally my finishing time), so he decided it would be best if he drove me home. It was in the car that the ‘perfect storm’ occurred. We were about ten minutes away from our front door when the first chords rang out through the speakers. They stood out instantly as something gentler and more intimate than the usual rock, punk, and metal that would normally be played on that particular station. As corny as it sounds, the song was simply beautiful – and I purchased the EP from the iTunes store before the car engine had stopped purring.
I have literally not heard that song on the radio since, which leads me to believe that I experienced a real moment of providence. Were it not for my illness, I would have been standing on a crowded bus listening to Queens Of The Stone Age (don’t get me wrong, I freaking LOVE that band) in complete ignorance of a song I now feel I cannot live without. Much as it may have pained me to admit, Fibromyalgia granted me a gift that day.
Give it a listen – I’m sure you’ll be as impressed as I was.