A Balancing Act: how I’m managing the daily currency of Spoons

 

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.

many spoons 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.

©2019butyoudontlooksick.com
  • Christle Waugh

    I have many difference diagnoses or labels, as I call them. And I’m sure more to.come as the Drs continue with tests. IBS and fibro and degenerative disk, and ..oh the stupid list goes on. Anyway.. I have just started using the spoon theory daily.. No one I know even takes the time to really understand it.. But I sure do. I have been in a “pill fog” for almost 3 days now. I hate pain meds,hate nausea meds, hate anxiety meds. But sadly, since people expect things from u when they don’t understand…I have apparently pushed myself where I have a negative number of spoons. I cannot sleep due to the pain,nausea,and all else..and tho the pills do nothing to ease the symptoms, at least they mess with my mind enough so I just don’t care. I just sleep. I don’t want to be that person. But right now, there is no choice. Well meaning people say ..go to the ER if its that bad..what they don’t see is that the ER is just me sitting in a waiting room for hrs, sitting in an exam room even longer,just to get pumped full of more mind numbing meds and instructions to see my Dr.. Not worth my time and the effort it requires to go. So glad there are others out there that get it..since no one in my world seems to.

  • Thanks, I too live with IBS and pmdd.

  • I second that!

  • Another Tara

    This whole spoon notion really helps me a lot. I have had increasingly more frequent bouts of IBS this year. I used to have one or two a month and now I find myself with one or two or more a week. It is really taking a toll on me. I felt really thwarted today. I felt fine this morning and was very excited to drive to town with my husband and do a few very light errands and then come home. About a half hour in, the IBS started. I tried so HARD to remain positive and to push through and try to do what we set out to do. That 20 minute ride through the country from town to our house with no bathrooms was really hard. And then I spent the rest of the day in bed/bathroom. Couldn’t make dinner. Could barely get up to give candy to the trick or treaters.
    I need to try this spoon notion. Thanks for sharing your story.

  • Tara

    Thank you for this article. I may need to do spoons myself. I have Fibro,Bi-polar, IBS and triple scoliosis. I run my own small family farm, or try to with Chickens, Horses, Goats and I also have dogs on top of that. I have to force myself out of bed most mornings to get things done as I have everyone on a routine. I have found this helps with the brain fog that comes with all this. Though while I do so, I make sure to stop and relax and enjoy as much as possible while just being still. I have one goat nanny who will follow me around and while I am sitting she will stay close to me while I pet her. She seems to remind me in her own way when I need to just stop. Unfortunately, though I have a husband and two children, they seem to understand this less than the one goat. I may have to get them to read this article as well so maybe they too can understand what life is like for me.

  • Kathy Meredith

    I truly appreciate your concept of the spoons for daily tasks. I call them coupons for myself as I have SLE Lupus and am very aware that each day is different. Some days are good, some bad. What I have learned from the limitations of my disease is that I really prioritize on what Really matters. I’ve often said that to myself that I would be embarrassed to think I risked a flare due to my worrying about getting the baseboards cleaned or the garage organized again. I feel that it is an opportunity to live my life fuller and I don’t get as rattled about things I cannot control. Of course , I have my meltdowns and frustrations, but I am more focused on my health and my spirit.

    Thanks for all you do….

    Kathy M. Tampa, Fl

  • Tammy

    Thank you so much for coming up with this great idea, and for sharing it with us! 🙂 While I’ve grasped the concept of “spoons”, I’ve never thought of actually finding a way to physically allocate them in order to plan my days. I have fibromyalgia, dysautonomia, IBS, major depressive disorder, neuropathy in my legs, degenerative disc disease and two benign spinal tumors. (Wow, that looks depressing typed out like that….LOL) My days are quite often a failure of the tight-rope walk. Perhaps this will help. Again, thank you so much!!! <3

  • Jennifer

    OMG!! It is SO hard to explain to people why sometimes i act normal and the other times i might as well b dead! I get so tired of hearing “it is all in your head”! I have Fibro, depression, IBS, RLS MCTD… I know I am forgeting something just not sure what! Thank you so much for this article. I will be having my family and freinds read it. I hope they begin to understand! THANK YOU!!!

  • Sacha

    Wow, just found this blog and your article was the first one i read, and it made me cry. I’m 33 have a genetic conective tissue disorder called HMS, S-curve scoliosis, pmdd, bi-polar, degenerative disc disease, arthritis, a heart condition, fibromyalgia, Then I ruptured my T-12 Vert. in a car accident 9 months ago was paralized from the waste down and told I would never walk again, well I have 6in. rods in my back and learned how to walk again….fell on my knee, had to get 5 knee injections, and developed rsd b/c of the fall. Just fell on the way to the bathroom at 2am and broke both my radius and ulna, so at least I have a cast to show for that, but the rest of the pain isn’t visable and i hate it!
    I am still learning how to walk, but my kids r 3, 8, n 12 and it’s so hard to explain to them.
    Thanks for the article

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  • I have IBS, Lupus and Bi-Polar. I have struggled for years to make sense of my lack of ability to get stuff done. Thank you so much for sharing your story! I’ll be signing up as a spoony!

  • Thank you all for your comments. I’m so happy to hear that my article struck a chord with you.

    Shannon – you are the first person that I’ve come across with the same troublesome trio of Fibro’/IBS/Depression as me.

    Karen – it’s not easy to strike the right balance. I’m still learning but am at least enjoying life more. Wishing you luck and patience!

    Wishing you all lots of spoons.

    Thanks for reading.

    theWriteRach x

  • Sherrie Nelson

    I have Fibro, chronic severe depression and asthma – thank you so much for writing his – – it’s so hard to explain to people – friends and family, that want you to do something or go somewhere and you don’t have the energy – because if you do that, then you won’t have any reserve for something as simple as fixng something for dinner!

    I try to be active – somedays when I get out of bed, I know it’s gonna be a “low spoon” day – because I am hurting so badly that I don’t think I can stand it – but somehow, I make it through that day, and hope tomorrow will be better.

    Bless you for your story –

  • Great post! I have Fibro and IBS as well, and I’ve also tried to explain to people that I start the day with much fewer “energy points”, and therefore run out much faster than the average Jane.

  • Karen Bradshaw

    I really enjoyed reading your article. I have Cystic Fibrosis which requires as much physical activity as possible to keep the lungs working properly, but also now have a circulatory problem which means activity leaves me swollen and disorientated. Hence a very difficult balance and needs almost constant assessment to see if I am capable of my planned activity. Spoons may help!! Best wishes

  • Hi there,
    Thank you so much for putting this into words. I have Fibromyalgia, IBS and depression as well. I run a non profit group that rescues dogs in the States. It is a struggle everyday to keep up. You have given me a wonderful way to plan my days. Thank you so very much!