Living with a chronic illness can be like walking a tightrope.

I live with Fibromyalgia, Irritable Bowel Syndrome and a depressive disorder. In order to best manage my Fibromyalgia, it’s vital that I carefully pace myself. Too much leads to burn out, but too little activity can also worsen my symptoms. It’s a balancing act. While a gentler lifestyle might suit my Fibromyalgia; it’s a highly productive and active life that best keeps my depression at bay. Throw in my Irritable Bowel Syndrome with persistent diarrhea among the worst of my symptoms and suddenly the tightrope that I’m walking, feels finer than a human hair.

All too often I’ve found myself in floods of tears bemoaning my ability to get through a single week without crashing. I’m naturally driven, positive and someone with plenty of ‘get up and go’. I don’t like to be thwarted but I’ve found that to be an integral part of my diagnoses.

For months now I’ve set out at the beginning of a week, determined that this would be the week I’d make it right across that tightrope without taking a tumble. There’d be no cancellations, no missed opportunities, no more endless days spent in pajamas or worse still confined to bed. I’d be the one setting the agenda. Instead of my Fibromyalgia, IBS and depression calling the shots; I’d be in charge!

Alas, it’s never quite so easy, is it?! Often I’d start out well, but no sooner did I start to find my feet, than the rug was pulled out from under me and I skidded back to square one. I was careful not to give myself too much to do but still I never seemed to get it right. I felt sure there had to be a way to at least hold my ground while my symptoms did their worst, instead of being swept away and left to play a never-ending game of catch-up.

I strongly believe in the maxim there’s no such thing as failure, only a failure to try and I try to live my life by it. However, as Spoonies are all too aware, often our conditions seem not to allow us to try, slamming the brakes on our lives as often as they do.

After yet another stalled day, when not only had I missed an important appointment, I’d also missed my first meeting of a literary review group that I was very much looking forward to joining. I’m book-mad and I’d like to get out more and meet new people. Frustrated beyond belief, I determined that I had to find a way to make a change for the better.

My husband, Simon, hit on the idea of developing a series of Spoon Ratings, whereby I’d rate each of my activities according to the number of Spoons they’d use. He went on to speak about something else but I couldn’t take it in; my mind was racing, a Spoon rating system! I quickly realized that using this system; I could develop a far clearer picture of what I could and couldn’t do in any given day or week.

We needed to set a base line as a starting point and settled on 20 Spoons as an arbitrary daily Spoon allocation. It was the first number we both thought of and it felt right. Simon enthusiastically began to suggest ratings for various daily activities but unsurprisingly, as a non-Spoonie, his estimations were lower than mine. He was visibly shocked when I rated going out to play badminton for an hour as a 5-Spoon activity, likewise going for a half hour singing lesson partly because of the traveling involved. He looked crestfallen until I reassured him that he doesn’t have a limiting chronic illness and so can’t be expected to know. He often tells me that he wants to help me more but doesn’t know what to do. I explained how making himself more aware of the realities of ‘living by the Spoon’ could only benefit me.

I decided that basics such as getting out of bed in the morning when I always feel dreadful, watching a little TV or feeding myself and taking my daily medications and supplements would each cost me 1 Spoon. Exercising for 30 minutes using Wii Fit would cost 3 Spoons, taking a trip into town, by bus or driving, would cost 5 Spoons. An evening out would cost between 3 and 5 Spoons, depending whether I drove or was driven, how active I needed to be and so on.

In the UK there’s a long-running series of TV ads for the credit card, MasterCard. They go something like this:

Man leaves business meeting in a hurry. He’s late and has missed the last train he was meant to catch home for the weekend. He looks distraught, until…. he pulls out his MasterCard and buys himself a cab ride all the way home! A rather smug male voiceover says: “Time spent with the family – priceless. For everything else there’s MasterCard.”

I joked to my husband that just being married costs me an infinite number of spoons! He replied, “Being married is priceless.” I quickly retorted, “And for everything else, if only there was a Spooncard!”We laughed but I knew he was beginning to understand how meticulously we Spoonies must plan if we are to live anything even approaching a full life.

I began to rate each day of the week ahead according to what I had in my planner and basic daily routines. Beside each activity I drew the number of spoons required to complete it. I say I drew a spoon; really the ‘drawing’ was more of a scribbled misshapen circle with a stick attached to it. This was no time for perfectionism!

I knew this could work when I rated my first day. I knew from experience that what I’d planned made for a highly productive day and one that was likely to use all of my resources. Sure enough, when I added up the spoon ratings, they came to 20, the equivalent of my total daily allocation. I’d be ‘maxed out’ with nothing in reserve.

Spoon Ratings help to ensure that I don’t now over-schedule my time. What I’d previously seen as a ‘light day’ has often rated far heavier than is good for me. I naturally under-compensate, believing I can always do more. Using my Spoon Ratings a more realistic picture is emerging.

This being chronic illness, that isn’t the end of the story. Any number of things can and do deplete my daily spoon count; a sleepless night, a particularly severe IBS attack, emotional stress or the common cold to name but a few. Fewer spoons run out sooner. It becomes a choice between starting later and burning out earlier. While that may seem like no choice at all; I’ve come to realize that it’s part and parcel of the management of my ‘new’ life. I’m writing this section propped up in bed on my marvelous V-pillow; it’s way past noon! I slept badly last night as I have for much of this week. I have an ongoing disc problem, for which I’ve been prescribed an anti-inflammatory drug. It’s no longer enough and so I’ve made an appointment to see my doctor, in the hope that more can be done for the pain. Consequently, I began today spoon-depleted.

Experience tells me that while it might not be possible to recoup lost spoons; it is possible for me to mitigate spoon loss. Until recently, I would’ve started out on a ‘bad’ day, feeling thwarted, frustrated, angry and anxious. I’d quickly expend whatever spoons I had, trying to fight back. I’d use up my few spoons simply by carrying out a few basic chores. Time and time again I’d burnout, before I’d had a chance to do any of things I really wanted to do. Most of all I wasn’t finding any time to write. My ultimate passion, my raison d’etre, my means to earn money for myself, had fallen by the wayside.

This morning, I allowed myself to sleep in late. I ate my breakfast in bed and then picked up my laptop. I checked the BBC News headlines and mooched around on Facebook for a while. Before long and almost without even thinking about it, I found myself writing. Once I got going, I didn’t want to stop, working not only on this article but also on a separate smaller project. Despite my health’s best attempts to thwart my day; I’ve found myself enjoying it nonetheless. Spending half the day in bed isn’t ideal; my husband has had to take a planned trip to town without me. But at least I am being productive. I’m working towards my goal of regaining the writing career that illness stole. A bad start has led to an extremely productive day. My derrière is now achingly stiff so it’s time to move on! I plan to spend half an hour exercising with Wii Fit, then take a breather and drink plenty of water before showering and dressing. I’m looking forward to seeing where else my spoons might take me today. I am less frustrated and more fulfilled.

Fibromyalgia is a social beast. He likes to cast his net far and wide and make many friends! His interactions with each friend differ from the next. We all feel Fibromyalgia’s presence differently. We have to manage this relationship however we can, to minimize the negative and maximize the positive. What works for one, won’t necessarily work for another. But by sharing our knowledge of the beast, we are each better equipped to tame him!
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Written by guest blogger Rachel Mort-Adams from www.thewriterach.com She lives in Scotland and is a contributor to many magazines, websites and even has a monthly Column with her local gazette.