Tag Archives: CFS

Inspiration Monday: My Own Little Patch of Earth.

Roses in my own garden.

Roses in my own garden.

One of the things I want to be doing this year, as part of my quest for EASE , is to try and reduce the amount of pain I experience on a daily basis.  And after quite a lot of trial and error, I have discovered that the kind of pain I have at the moment is actually EASEd by movement.

I’m concluding that a main source may actually be the slow atrophy of my muscles over the last 17 years of ME/CFS.  If you are too exhausted to move, your muscles degrade.  Its a major issue for anyone with this illness.  When I had influenza a couple of years ago, my daily yoga practise went by the wayside, and since then, apart from sporadic efforts at walking, I’ve been able to do very little.  I hadn’t realised how much the yoga had been helping back then until I developed back problems, because all my core muscles have wasted so much.  My body can’t hold itself up properly  anymore.  With shooting pains in my legs and hips as well, I’m having to face the fact that if I don’t haul myself off the sofa at least a little bit once a day, I am doomed to a painful existence.*  And that’s not what I want.

But how to find something that motivates me to get off my bum without wrecking the delicate energy balance I’ve had to cultivate in order to function?

The answer came to me this morning:

Just look out of the window, Rebecca.

We have a nice, good-sized, south-facing garden that we have really done very little with since the first year we moved in.  This autumn, it efectively got abandoned as a result of ongoing ill-health and wrinkly-wrangling commitments.

Which is a shame, because I made a lovely garden in the house where we lived before.  It gave me a great deal of joy and healing, and is one of the things that the new owners still treasure.  But when we moved here, I just didn’t connect with the garden in the same way.

Gardening gives me the opportunity to get out in the fresh air, get my fingers in the soil, and soak up all that good prana, even though I don’t like getting mucky, if I’m honest!  It is enormously satisfying when you have finished to be able to sit back, and look at the work you have done.  It is tangible evidence of your efforts.  You can do a little at a time, and stop when you have had enough.  Even a brief walk around outside, picking up a few stray leaves, or doing a bit of dead-heading can make someone in my situation feel so much better.  A little bit of movement in the fresh air gets the blood going and the muscles moving, however gently.

And you get pretty flowers into the bargain.

Its a no-brainer really.

This afternoon, I’ve been out there, raking up leaves.  I didn’t do much.  Just enough to allow me to connect with the muscles in my arms, back and legs.  Just enough to feel the blood in my veins.  Just enough to get my cheeks pink in the nippy air, and the smell of wet earth in my nostrils.    Now I’m inside, I can look out at what I’ve achieved.  The garden is still a tip, overall, but I can see the newly flowering primroses in the bed by the gate.  They were covered with big oak leaves like tanned hands before.  Now they are winking at me, little creamy-yellow faces in the twilight.  Hope that Spring will come.

And yes, my arms are wibbly from the effort, and I feel like I might need a lie down, but I also feel refreshed and loosened up.  I have done something creative, something to nurture myself and the earth on which I live.  That feels nice.

Maybe I’ll get some plant catalogues and start planning what bedding I’ll put in in the spring.  Maybe I’ll work out what I can do with that disastrous centre bed that just isn’t working.  Maybe I’ll work out a humane way to get rid of the moles.  Maybe I’ll get some winter pansies to put in the hanging basket by the front door.  Maybe my peony will flower this year.

With a garden, anything could happen.

Happy Creating,

EF

*I feel like I need to add that this current pain is different from the pain I experience as part of my ME/CFS symptoms.  Its different in character and location.  It can be relieved by movement, which my ME pain cannot.  That is why I conclude that its caused by muscle wastage, and not as a result of the disease itself.  Exercise has been touted as a cure for ME, but its not.  It can only help with the associated muscle loss.  If you are experiencing serious pain yourself, I feel I should encourage you strongly to see a doctor or medical professional before you commence any kind of activity which might exacerbate the problem.  Don’t make yourself worse!

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Inspiration Monday: Silence

pat oxburgh b&w

Husband sitting in the partially ruined church at Oxburgh, Norfolk

I was reading the chapter on silence in Christina Baldwin’s book ‘Life’s Companion: Journal Writing as Spiritual Practise’, and it immediately rang bells for me. I have a particular reason for this. Let me explain:

One of the symptoms of the chronic illness with which I live, ME/CFS, is sensitivity to noise. Some days are better than others, but there are everyday sounds in modern life that can create physical agony for me. And no, I’m not kidding.  I mean, I get actual pain. A cold electric current feeling up and down my spine and a nauseating icy pain in the back of my skull. Unpleasant to say the least.

For the first three years of my illness, I couldn’t listen to any music with a beat at all. Every thud of bass was like a knitting needle jabbed into my neck. No pop radio, no rock, no hand jiving in the car to the Stone Roses or the Pet Shop Boys. No Elvis.  No Beatles.  Nothing.

I couldn’t listen to anything much. Mozart and Bach worked, a little Handel mixed in. Beethoven proved too noisy, as did anything after him, although I did find I could handle some Vaughan Williams. Opera was right out, so goodbye to my favourite tenor, Placido Domingo. I just couldn’t bear to listen to him anymore.

Most of the time, though, any kind of noise was painful.

So for three years I avoided places where the music was piped, and had to ask friends who listened to music perpetually to turn down their stereos, which was mortifying because they just didn’t understand.

I adjusted to a world without music.

I learnt a different way of listening.

I listened to the birds, the ones that make pretty sounds, and the ones that don’t. I learnt I could set my watch by the rooks in the tree opposite the house. (They all get together and start shouting at one another at 3.30pm, no matter what time of year it is.) They’re funny, like one of those noisy markets where everyone is shouting about their wares.  I’m rather fond of rooks now.

I learnt to hear the vegetation around me too, the creaking trees and rustling shrubs, the fresh new spring leaves and the rattle of the dried autumn ones.

And the animals. The scuttle of mice in the undergrowth, the mewling squeaks the rabbits make, the scrabble of the squirrels on the roof tiles. The buzz of the mason bees under the window in the summer, the drone and thump of the hornets throwing themselves against the window, attracted by the light, in autumn.

I came to realise how much noise pollution we endure, day after day, the constant onslaught of a life lived with continual racket, the radio, the TV, the iPod, the piped music, the slot machines, even the roar of conversation echoing in the cavernous, sound-reflecting spaces of shopping malls. And how much we use recorded sound to blot out our minds, to stop us thinking too much.

The Christian mystics said that prayer is talking to God, but it isn’t much use if you don’t listen for when He speaks back. To hear the Divine, we have to be in silence. This is just as important when the voice that speaks inside us is the big, blousy, shriek as when it is the almost inaudible whisper. The practise of creativity demands that we listen. Sometimes, we have to listen hard, and without distractions.

When did you last spend time in silence? Do you make space for a little quiet time daily? Do you relish that moment when the kids are in bed, and you can sit down at the kitchen table with a glass of wine, take a deep breath, and just listen to the noises the house makes around you as it settles for the night? Or do you fill every waking hour with a constant cacophony to drown out the voices inside your head that are telling you the life you are living is not fulfilling you?

Out of the quiet comes not only spiritual fulfilment, spoken of in all religions, but human creativity. Out of silence come the stories we tell, the fantasies and day dreams that grow into novels, plays, paintings, films, concertos and ballets.

When we cultivate stillness, when we listen, we give our brains space to breathe. And yes, sometimes we then have to face up to the uncomfortable truths of our lives. But often, we have the opportunity to tap into wells of creative inspiration previously unknown to us. Our Muse’s voice can be heard.

You don’t have to take a vow of silence to benefit from stillness, and I’m not saying you should give up the joy of music. (I’m back on it now, and believe me, its one of my greatest inspirations.)

Listen to yourself.

What I am suggesting is that you take time daily to be in stillness. To listen to the sounds of the world around you instead of filling the void with canned synthetic noise. To listen to yourself. It may only be ten minutes, or the time you spend in the bathroom every morning, or half an hour before bed without the telly on. You don’t have to meditate, although that is good too. No, this is a different idea, a way of being quiet with ourselves, a way of listening for the inspiration to come. I know you lead a busy life, no doubt, and that quiet in a city is hard to find. But I assure you, it is there. You can find it. And when you do, immerse yourself in its balm, as often as you can, and allow it to feed your creative life.

Happy Creating,

EF

Outflow: Stand Still and Listen

Shadow Selfie

Shadow Selfie

You didn’t get a post this morning.  You got an empty space where your post should have been.

Sometimes, life gets in the way.

Best Laid Plans, and all that.

I am in The Red Tent.  My Moon Palace.  The Painters have arrived.  Auntie Flo is in town.  And all the other euphemisms you can think of. A weekend spent caring for my elderly and very frail in-laws followed a busy week, alongside a developing cold, has caught up with me, and now my period has arrived.  And there is no juice left.  Nothing spare.  All I can do is lie here and contemplate.  Try to withstand the OUGHTs and the SHOULDs that are crowding my brain right now, pointing their fingers in accusation because of all that is left undone.

Learning to stop is the hardest thing about my illness.

At primary school, our teachers utilised a very simple form of crowd control.  On the first day, we were instructed about the first rule of school.  If the teacher says ‘Stand Still and Listen,’ thats what you do.  You stand where you are, don’t move.  You open your ears and your mind, and wait for the next instuction.  This was ostensibly about the need for safety, but it also meant that we learnt to pay attention.

Over the years, I have forgotten the importance of ‘Stand Still and Listen’.

Today I’ve been wondering whether ‘Stand Still and Listen’ is what my ME is here to teach me.

To listen to my body.

To listen for the pain.

To listen to my life.

To listen to the world and the people around me.

To be still, and know that I Am.

I will be gone soon enough.  We all are, eventually.  Better make the most of it while we are here.  But that doesn’t mean a frenzied whirl of activity, filling every moment with busyness because we are afraid of death.  It means savouring the moment, being mindful of NOW.

I am sure I have spoken on this theme many times on this blog, and I will do so, no doubt, over and over again in future.  I struggle to learn this lesson every day.  And yet, as a writer, I need to Stand Still and Listen even more than most other people.  Because if I do not observe the world around me with quiet reverence, if I do not record it with compassion and objectivity in my mind and in my notebook, then how can I record it in my stories?  How can I make my story worlds into believable places?

Whether you are a writer, an artist, or any other sort of creative, or whether you are someone who does not see themselves as such, take the time over the next week to practise Stand Still and Listen.  Whether you actually physically stand still or not is up to you.  But take a moment to be still and aware, a moment or a day or a week, or however long you need.  Take stock.  Be in the moment.  I promise the world will grow and deepen for you when you do.

With love from the Red Tent,

EF