PR and energy

How many spoons will I have today?

The spoons in question are an analogy for available energy. If you haven’t read spoon theory, it was developed by a woman with lupus who was trying to explain to a friend what it was like to live with a disability/illness. She used the spoons to help her explain that for many people – especially young people – spoons (energy) were limitless. However, for people living with illness or disability, there are only a limited number of spoons (energy) available to them each day, meaning that careful choices need to be made.

As she says: “the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.”

I find spoon theory incredibly useful as fatigue and low energy is one of the aspects of my PR that I struggle with. Part of the problem is that, like my flare ups, the fatigue is also really variable. When I did my mindfulness course, we were encouraged to keep a diary to help us with pacing. For many people this was invaluable as they were able to clearly see a link between doing too much and an increase in their pain or tiredness. Typically, however, it wasn’t so straightforward for me. What might floor me one day, might not be a problem the next. To complicate matters even further, I don’t always get any warning signs. It’s not like I KNOW how many spoons I’m going to be able to play with today (or this week). Unlike the fuel tank of a car, which lets you know when you’re down to the last quarter of a tank, my body doesn’t always tell me that I’m running low on spoons, only when I’ve run out.

The spoon theory is also important in helping me remember that everything takes energy – not just physical exercise. Thinking, working, talking, socialising, cycling, zumba-ing, getting out of bed, phoning friends, cooking… they all need a certain number of spoons – some more than others.

As with my pain, the variable fatigue and limited energy makes life difficult to plan and I find that really hard. Cancelling something because I’m in too much pain is one thing, but somehow cancelling because I’m just ‘too tired’ seems a lot worse, and makes me feel as if I’m being unreliable. I also find it hard balancing work with social and fun things. If I put all my spoons into working, then there are no spoons left for exercise or other fun stuff. While many people are striving for a good work/life balance, for me it seems all the more important. There’s nothing worse than spending the week working hard, leaving me with no energy left to leave my bed at the weekend.

The type of work I do also makes a difference. Training and facilitating takes more energy than writing and editing. Meetings aren’t too bad, unless they go on too long. So, when planning my working week, I need to take this into account too.  Conserving energy is why I sometimes spend the day working from bed if I’m going out in the evening. Or why, at the end of the day, I prefer to hang out in bed than in the pub or sat in the living room.

What’s particularly hard is that I’ve always been a doing sort of person. I’ve never been one to spend every night at home in front of the telly. I’ve always enjoyed gigs, the cinema, and hanging out with friends. I could probably find something different to do every night of the week. I frequently fill my diary up with interesting and fun stuff, and then realise that I’ve planned in too much and that something is going to have to give.

I often wonder that how much of my fatigue is down to getting older, and how much is down to the PR. I guess I’ll never really know.  I do know that looking and planning ahead is a crucial aspect of living with limited (and variable numbers of) spoons.  A party on a Saturday night means that I need to make sure that I can spend the whole of Sunday in bed. I may not need it, but better to plan it in, than not.

I’m still learning about how to live with limited spoons.  I’m  still learning about prioritising, still learning about balancing and still learning how to be okay with having to cancel stuff if the spoons just run out when I might not expect it.  Although I can’t control the number of spoons I’ve got available to me each day, I still have some control over what they end up being used for.


5 responses to “PR and energy

  1. Pingback: Tired of being tired | My Palindromic Life

  2. I have just been diagnosed with PR today and came across your blog while trawling for more information. The fatigue part of my symptoms is what I’m struggling with most, but also what the doctors seem to care about the least. Thanks for making me feel half normal again.

    • Thanks for your comment and I’m really glad that you came across the blog and found it helpful. My rheumatologist didn’t even acknowledge that fatigue WAS a symptom. It is definitely one of the hardest things to adjust to, and to live with – and hard for others to comprehend too. I hope that now you’ve a diagnosis you can get some sort of treatment programme in place. The facebook PR group is also very supportive and useful and I would recommend it.

  3. Have just found your website, what a joy! Was diagnosed two weeks ago and this site is by far the best site I have come across. It makes me feel “normal” (hate that word!). I, too, find the fatigue so much harder to cope with, and I was always able to push myself so far. I feel in ways I have to mourn a part of myself lost to this blasted condition.

  4. Pingback: A Day Without Spoons | My Palindromic Life

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