Tag Archives: ME/CFS

Post Number 200!

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Flow at Ardnave, Islay.I can’t quite believe I have written two hundred blog posts for this site since I started it on 18th April 2013!  Thats quite a lot of information to write down, and I’m fairly proud of myself for managing it.  And I am grateful to everyone who has read, supported, commented and subscribed.  Thank you so much!

That said, you will have noticed that posts have been a bit scarce lately.  Please don’t think I have forgotten you. Nor have I run out of enthusiasm for blogging.  I am determined this isn’t going to be one of those blogs that just stops, mid-conversation, and hangs there, never to be continued.  I don’t want that.  Besides, the work of creativity never ends, and neither does learning about it.

Nevertheless, Post Number 200 feels like a turning point.

I dont really know where I am going with this blog, any more than I know where I am going with my life.  I’m always talking about seismic shifts going on in the background, I know.  That’s the kind of life I like to live – one in which I am constantly in a process of of Becoming.  But right now, well, I feel as if I am changing right down to my very DNA.

Let me explain.

At the start of the year, I decided to take part in Sas Petherick and Meghan Genge’s Heart and Hearth Circle, and just after that, something extraordinary happened.  I decided to sit down and do a Goddess Card reading, as I often do.

The card I pulled that day was Kali.

(Cue meltdown.)

Kali is described by Juni Parkhurst in the book which accompanies the pack as follows:

“Kali is black, full-breasted and bloodthirsty, and dances on the bodies of her enemies.  She is alive with power.  She is creator and destroyer.  She is not a goddess to mess with.”

No, indeed.  Kali frankly terrifies me. Parkhurst goes on:

“Drawing this card puts you on notice that major changes are taking place.  Structures around you may crumble and fall, leaving you temporarily lost.  Remember, however, that destruction must sometimes come before creation.  The old, tired, redundant parts of your life must fall away in order to create space for the new and vibrant life that is coming…”

No shit, Sherlock!  Since Kali appeared on my desk that day, its been one darn thing after another.  My mother was taken very ill in January, and I travelled across the country to look after her and help coordinate her treatment (she’s lots better now, thank goodness!).  Shortly after that, Husband was diagnosed suddenly with diabetes, which necessitated a stay in hospital, and a major shift in lifestyle and mindset for us both.  Then I had a bout of profound anxiety and depression, followed by a heart problem (luckily that seems benign!).  And for the last three weeks I have been prostrate with some kind of virus that has affected my throat and reignited my ME symptoms, leaving me utterly exhausted, and unable to mentally process.  Throw in elders with dementia to care for, and constant travelling, and its been a very tough five months.

All this has resulted in some very profound soul-searching, and a readjustment of everything I previously deemed important. In the face of the (admittedly distant) spectre of losing my dear other half, so much that seemed crucial to existence now appears totally and laughably irrelevant.  While he continues to respond well to treatment, I am all too aware that he is a similar age to that at which my father was diagnosed with terminal cancer, a sobering thought.

All this is a lot to process, and when one’s brain power is reduced by illness, there isn’t a lot of juice left over for anything else.  The result has been what I would describe as something of a story drought.  Not writer’s block.  I’m perfectly capable of writing.  But I’m finding that no new ideas are being delivered in the usual way.  I’m a person who is used to fresh stories popping into my head on a daily basis.  I’m never short of new ideas.  Except now I am.  So this is something of a surprise.  I am determined not to be phased by it.  After all, its understandable given what I’ve been in the midst of during the last few months.  I’m in subsistence mode.  Life is just sucking up all my neurons at the moment in order to arrange basic survival.  There’s nothing left for cave paintings at this point!

I suppose I must have invited Cosmic Intervention into my life on a grand scale by opting for the Heart and Hearth Circle, and signalling that I was ready to get ‘spiritually naked’ as it were.  I’m not sure I realised what I was signing up for, but do we ever?  Life has changed beyond belief in the last five months, and so have I.  And I don’t know what is going to come out of it.

But it will be something really, really good.

So as we move into the next 200 posts together, I hope that you will stick with me through all these upheavals, this drought, and whatever comes out of it.  My brain is currently toying with new sewing, quilting and illustrating ideas.  I am keeping afloat by journalling and pursuing a version of Natalie Goldberg‘s writing practice.  And I will keep you posted as to what emerges, though my missives may be a little less regular than they have been for a while.  I know you understand, and I shall look forward to sharing this new life adventure with you in the coming months.

(And incidentally, I really, really recommend the Heart and Hearth Circle.  I’ve learnt so much, and Sas and Meghan are wise and wonderful.  And I’ve met such lovely kindred spirits too!)

Happy Creating, EF

Creative Recuperation

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Statue by Anthony Gormley on the top of Blackwells Art and Poster shop, Broad Street, Oxford.

Statue by Anthony Gormley on the top of Blackwells Art and Poster shop, Broad Street, Oxford.

We just got back from a demanding time in Oxford, and after the difficult fortnight we have had, I find myself feeling emotionally as well as physically exhausted.  So when I found this post from Jamie Ridler this morning, I realised I had to make a concerted effort to have some healing time.

One of the hardest things to accept about our creativity is that it often comes and goes.  There are times of bounty, when the Muse is flowing and there are so many ideas coming into your head and out of your pen that you feel like you could get hysterical just trying to keep pace.

And there are the droughts.  The times when nothing new has come for months, and you feel like you may never paint or write or dance again.

One of the things that my ME/CFS has taught me, and continues to teach me, is to go with that flow.  There are times of the year when our bodies need downtime, and times when our tails are up and we are full of energy.  Any woman knows this from her menstrual cycle.

The trouble is that we live in a 24/7 culture that requires us to be ‘on’ seven days a week, twelve months a year, and our biology just hasn’t evolved sufficiently to keep up with that. (We’ve only had the lightbulb for a hundred years or so, remember?)  We simply can’t be  in action continually.  We aren’t machines.  We have to stop and rest.

Resisting that PUSHPUSHPUSH productivity mindset is a constant practise, but if you are intent on living a truly creative life, you need to take account of not only your own biorhythms, but also your creative rhythms.

It is time to be gentle with ourselves.

Because if we don’t make time to be gentle with ourselves, our bodies will remind us that we must in no uncertain terms – often with the red traffic light of major illness.

So this week, I am resolved not to make any particular demands on myself. I will be journalling, and watching some old films, eating nurturing food, and taking lots of naps.  Maybe I’ll even paint my toenails, which always cheers me up!  I am going to take it one day at a time and listen to what my body needs.  By doing that, I know my mojo will come back eventually.   I just need to give it some space.

Happy creating – or resting, whichever you need to do right now,

EF

 

The Tale of the Soapy Otters

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The view from my pillow

The view from my pillow. Sorry its a bit blurry, but that’s how I feel right now.

This is my life right now.

Lying in bed, sleeping, reading, writing, staring out of the window, watching the clouds, listening to the wind.

I’ve had a real health crash.  I’m back to the ‘having to sit down to brush my teeth and wash my face’ stage.  The ‘having to go back to bed after my shower because thats all the energy gone for the day’ stage.  The ‘oh, shit, how the hell did I get this bad again?’ stage.

Today, I’m regarding myself as lucky.  My brain has picked up again, so I am able to read once more, but to start with it was impossible to take anything much in.  There was that horrible feeling of staring at the page and knowing that the letters and words so familiar to me were completely unintelligible, that even if I could understand them, they wouldn’t stay in my mind long enough for me to make sense of the author’s ideas.  Words become like soapy otters on days like this.  You’ve no hope of catching them.

That’s the hardest thing for me to handle about this illness, I think.  The soapy otters. 

Because I am a reading addict.  I was the kid that read the back of the cornflake packet at breakfast every day (even the list of vitamins) three or four times, just to keep myself entertained.  As an adult, I need to have something to read continually with me, or I get twitchy.

And if I am not reading, I am writing.

Being deprived of this capacity on however temporary basis is agony.  I feel lucky that it doesn’t happen too often anymore, because when I was first ill, some 17 years ago (Gods!  Is it that long?) it was pretty consistent for months. I couldn’t even listen to the radio because the sound hurt my ears, and I couldn’t understand what was being said anyway.

I’m grateful to be better, believe me.

Not least because the soapy otters are harbingers of major changes.

They herald a time when I am forced to lie down and face my thoughts.  They offer me a time to rest and recuperate, but also to realign.  My body may be rusting like that of the Tin Man, but my soul is in hyper space.  Things are shifting.

Soul shifts seem to come in spurts for me.  Nothing for a long time, and then everything all at once.  Maybe that’s why I am so exhausted.

My diary has taken a hammering since I’ve been able to write again.  Pages and pages.  So has my writing notebook.  And that big notebook you can see in the picture?  That’s my wellbeing workbook.  That is where I write down what my body needs, what my heart and soul need too.  My diary is for my thoughts and feelings.  My workbook is for my vision and planning.  For working things out.  It is my wellbeing memory.  And yes, I like to use brightly coloured pens in that one, not just to draw attention to certain paragraphs and concepts, but because I like them.  They make me happy.  Yay for Papermate Flair pens, I say!

You’ll notice there is another notebook in the picture, too, a black one.  That’s my current writing notebook.  And yesterday, I actually was able to write something in it.  A scene from a story.  I felt so proud of myself.

And when I have exhausted my Bloglovin’ feed, I’ve got books, though they are a bit more resistant to my brain at the moment.  I don’t know why I find the written page harder to understand at times like this.  The electronic one is definitely less ottery.

At the moment I am rejoicing in Danielle LaPorte’s wonderful ‘The Desire Map: a guide to creating goals with soul’, a title which is a bit of a misnomer because actually its about core desired feelings which really hits the spot.  I’m a person who finds it hard to connect with feelings, so using them as a life compass is a huge and thrilling idea to me.

The other book is  Tami Lynn Kent’s ‘Wild Feminine:  Finding Power, Spirit and Joy in the Female Body’, which is feeling more like hard work, but I think that may because I am so resistant to the material.  One of my intentions this year is to connect more to my womanness, and thats why I am reading this one.  I think its going to cause a revolution.  I’ll let you know how I get on with it.

And now, after writing all that, I’m exhausted again.  Sorry, I had better wrap up.  I just wanted to share with you where I am, the good and the bad.  And on the whole, while it is an uncomfortable and frustrating place to be, I find that actually I am deeply grateful for it.

But before I go I want to leave you with an unbearably cute photo of an otter sleeping:

Sea Otters can sleep on their backs in the water.

Sea Otters can sleep on their backs in the water.

Yes, I know he’s not soapy, but I couldn’t find one that was.  Which is probably for the best, don’t you think?

Happy Creating,

EF

Inspiration Monday: Intention

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On Ardnave Beach, Islay.

On Ardnave Beach, Islay.

Hello dear friends.

I just got back from a weekend looking after mother-in-law and aunt-in-law.  It wasn’t how I would expect to spend the Valentine’s Day weekend, but actually it was a chance to show love in ways other than romantically.  I did mother-in-law’s hair for her.  I gave aunt-in-law a manicure. I made them pancakes, something they would never be able to manage themselves.  Husband cooked us all a slap-up roast dinner.  On Sunday, Husband and I took some time to visit the centre of Oxford, and soak up the beautiful architecture and bookshops.

It was a weekend filled with all kinds of love.

Now I am home, with a week stretching out before me, and the need to take account of my own health and wellbeing.  I’m in the middle of a ME/CFS flare-up, which means taking a lot of time to rest and sleep.  I couldn’t do that while we were away, just caught enough sleep on the hop to keep going until we got home.  Now I’m flaked.

One of the things I find it helpful to do is to set an intention for the week. I usually do it on a Sunday, but circumstances dictated otherwise this week.  So this morning I am sitting here in bed, considering what should be my priority for the coming seven days.  These are a few of the activities I have in mind:

Rest.

Self care.

Some quality time with Husband.

Doing some drawing.

A bunch of pink roses.

When I’m up to it again, cooking some luscious vegan food.

Catching up with some writing I want to do.

Reading a new book, which arrived on Friday – so excited about this one, as I think it could make a real difference to my health and creativity.

Maybe giving myself a pedicure.

Of course there are a dozen other things I would like to do, and hundreds of OUGHTS and SHOULDS which I am ignoring.  It’s hardly a ‘To Do’ list.  I don’t like Goals, as I’ve said before.  I can’t set targets because frequently unexpected health problems prevent me from meeting them, which only leads to despondency.  Instead I give myself Intentions.

For me, an Intention is the spirit in which I go about my daily life, the ethos that guides me in choosing what I am going to do next. It is a way of nurturing not only my own wellbeing, but my creativity too.

My intention this week is ‘Rest and Recovery’.

I will do this week whatever needs to be done to look after myself, and to gently feed my soul.

What is your intention this week?

Happy creating,

EF

 

Deep Breath

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The view from my bedroom window.

The view from my bedroom window.

Samhain is past, and we are well into the Mourning Moon, a time of releasing the old, and accepting our own power. Here in rural South Norfolk, we’ve had soggy and unseasonably mild weather, which has lately meant long days of grey skies and continual downpours. The last of the trees to shed their leaves, the oaks, have begun their brown weeping. The landscape is smudged khaki and brown and yellow, the edges blurred by autumn mists.
A fortnight has passed since my last post, a space during which I have been trying to recover a little of my strength, and some of my thinking capacity. The first week was one of complete surrender. After it, I felt more rested than I had in a whole year, I think.
The second was more tense, punctuated by a day-long dash to Oxford and back, to take the elders to the doctors for important assessment and treatment. Seven hours in a car, split in half by four hours of pushing a wheelchair and repeating myself every ten minutes, was enough to exhaust almost all the good will my body and I had built up between us. Since then I have been lost in a hormonal, anxiety-ridden mist, feeling OUGHTS and SHOULDS mounting up like an impending avalanche over my head. Add to that the impending doom of the Christmas season, and life-changing news from several friends, and I’m not sure I’ve come out of this much recharged.
Let’s just say, this has been a time of reassessment and reflection.
While I have come a long way in my year of ‘DARE’, I’m not sure that I can face another action word year. After ‘REVOLUTIONARY’ (2013) and ‘DARE’ (2014), I’ve attracted way too much change into my life for comfort, and I think I need a rest, thank you, Mrs Universe. I’ve decided that next year, I need a gentler world to ease my way. ‘BALANCE’ or ‘NURTURE’, perhaps. Or even just ‘EASE’. A reminder to be kinder with myself, something that, like most women, I find difficult to allow myself to do.
Tectonic shifts are happening in my creative life too. The relief I felt at giving myself a rest from blogging caused a delicious upsurge in other creative outlets. I immediately went off and made the back door curtain I’d been meaning to sew for the last six years. I’ve been hand-quilting a Christmas stocking for my guide-daughter too, which is enormously satisfying. I hope I manage to get it finished in time. Being able to sew again feels fantastic, although I had a few scary moments trying to remember how to thread my sewing machine!
I’ve decided I need to be using my journaling practise in a much more systematic way, too. I want to try a lot more guided journaling, by which I mean journaling from prompts rather than the simple stream-of-consciousness method I have always used. I’m feeling the need for more deep self-exploration, and I want to use my creativity as an integral part of the work I do with my Gestalt counsellor on a weekly basis to effect this.
I haven’t stopped writing, in the meantime, even though I haven’t been blogging. I’ve got two big fanfics on the go at the moment, great sprawling things that seem to be growing every time I look at them. My head is full of scenes stored up to be written out. That’s not a brilliant way of writing, especially when my head is so blurry. The other day, I sat down to write a scene, only to realise that of the two emotional points I wanted the characters to thrash out, I could only remember one.
A bit not good.
The result was some serious re-evaluation of my notebooking habits, which I still haven’t resolved, but hope to share with you soon.
As well as putting some conscious intention into my reading habits, I’ve been contemplating a new original writing project too. In the wake of the In/Famous Engagement, and the storm that followed it, I came to the conclusion that I needed to get away from fanfiction. And yes, I know I’ve been saying this for ages, but sometimes it takes a big event to push us to make real changes. So much is shifting in my life right now, and I want to move on to something fresh. I don’t think I’m going to be able to give up writing fanfics, nor do I honestly want to, but there is an idea knocking at my door, scratching at the wood like the ghost of Cathy in ‘Wuthering Heights’, and it won’t go away. As I used to say to my school friends:

‘I think I’ve got a story coming on’.

And finally, I’ve got some ideas for non-fiction that I want to have a go at. I think the phrase is ‘watch this space’.
Thank you, dear readers, for sticking with me through this break, and throughout this bumpy year. While I know it is only going to get bumpier for a while, I’m grateful that you are with me, listening to my ramblings. It is good to know I’m not shouting into the unresponsive darkness.
Happy creating,
EF

Taking a Breather

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sussex churchI’ve decided I need to take a short blog break.  I’ve been struggling for a while with my health, and in the last week I’ve really ‘hit the wall’.  I’m in a lot of pain and my energy levels are extremely low.  My ability to think is compromised, as is my sight, and there comes a point when pushing myself to write posts, and worrying that I haven’t, is counter-productive.

Knowing me, however, as soon as I give myself permission to rest properly, I’ll have a huge creative surge and come back with a pile of goodies for you.  I hope so.  At the moment, though, all I really want is to regain at least a bit of my health.

Don’t worry, I’LL BE BACK!

Happy Creating,

EF