Much of what I learnt about helping my ME/CFS, I learnt in an instinctive, pragmatic way ‘This works...this doesn’t’. It was a technique that worked well for me.
It just makes it difficult to write frequent blog posts. Each time I write about something new, I have to get my brain around what was the methodology or the process I was following 😉.
But sometimes I read something and I think ‘Oh, that was what was happening….that explains it perfectly’. This happened last week when I read an email newsletter by Prune Harris (of www.pruneharris.com) where Prune described three ways of being with exhaustion.
It’s not in any way directed at people with the fatigue levels experienced with ME/CFS but if you are a higher functioning ME/CFS person, the situation she describes will be very familiar to you: ‘your energy level takes a such a nosedive that you feel like cooking dinner or doing one more piece of work is almost impossible.’
But the bit that caught my eye is when she describes three different ways of being with that exhaustion:
Some of you will leap up thinking, ‘Right! I can’t sit around here, I have too much to do’ and rush off to continue the speed of the day, collapsing into bed over-tired and too wired to sink into the restorative sleep you need. (I think of this as ‘Pushing through’)
Others may sink into the paralysis of lethargy that can accompany profound tiredness and feel unable to do anything else, maybe feeling tearful and exhausted. (My code word for this is ‘Lethargy’)
And others still may tune in, feeling the compassion and kindness to yourselves and assess what can wait until tomorrow, and what actually needs to be done and how best to do it with that kindness and care you need to achieve it. (I think of this as the loving, caring, kind way).
I like these words for two reasons:
I feel reassured that I’m not alone in feeling like this.
It’s the second description – the lethargy one – that caught my eye first. It’s a perfect description of how I felt so much of the time I had ME/CFS. It was just that I was convinced I should be doing the first option ‘because my ME/CFS isn’t that bad’ (I did do that option some of the time before feeling the consequences..).
I used to think ‘It’s only me not handling the exhaustion well. It’s only me thinking ‘I shouldn’t be so tired, I shouldn’t be so lethargic’. Such a relief to read something that makes it abundantly clear that what I experience is something others experience too.
My natural view of the world has been for many years a distorted one where everybody (except me) seemed to be effortlessly meeting incredible standards such as keeping on going when tired. My mother certainly did.
I need to be reminded frequently that this superwoman world doesn’t exist, and to be reassured that what I feel and do – or don’t do – is normal. Words like this play a very important part.
When there’s a statement by somebody I admire and respect – and their words are published – those words hold even more sway. A stamp of authority that I can harness to replace the ‘I’m right and you’re wrong’ authority common in my childhood.
These words by Prune Harris tell me:
‘You’re okay, Ali’.
Precious words, indeed.
It opens my eyes to possibilities
Once I’ve been reassured that what I feel is okay, I find it easier to open my mind to ‘What could be’. Prune Harris, by suggesting a third way of being with exhaustion, does that here.
It sounds a lovely way to me. There’s nothing about ‘And this is the way to achieve it’ and at the beginning I wouldn’t want that. But there’s a suggestion – a gentle, loving one – that I can have at the back of my mind, waiting for the right time. Some words that overtime I could have used to change my concept of how I could be.
I didn’t have these words when I had ME/CFS so I had only a hazy idea that if I could be more gentle with myself when the fatigue was at its worst, I would feel better. Occasionally I managed this but Prune’s comment about how this loving attitude to tiredness gives a way of looking clearly at what is essential for you to do would have helped me to realise that does happen and given me another motivator to try for this state.
Let’s repeat those words one more time:
And others still may tune in, feeling the compassion and kindness to yourselves and assess what can wait until tomorrow, and what actually needs to be done and how best to do it with that kindness and care you need to achieve it.
My mind is a ‘Big picture’ type of mind – I work well with concepts rather than detail – so you may or may not relate to what I’ve written here but let me finish with some words from a Mind, Body, Spirit author called Gill Edwards (that I have been thinking about as I quote Prune Harris’s words).
I can’t find the exact quote but here’s the essence:
‘Reflecting deeply on one or two words can be more powerful than reading a hundred books’
Remembering these words over the years has brought me back time and time again from a frantic rush to find ‘the solution’, a desperation to need the answer now. I hope you may find some peace in Prune’s words.
(Gill also introduced me to the idea that I could use books – because of their position of authority – to replace my outdated concepts.)
If you would like to sign up for Prune’s emails, here’s the link to her website. And click here for her articles on ME/CFS which so inspired me (I talk about that in my recovery story)
Warm wishes
Ali
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