Category Archives: illness

The Friday Review: September Reflections

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Andrew Gormley sculpture on top of Blackwells Art shop in Broad Street, Oxford.

Today is the first day of meteorological autumn, and it feels like it out here in Darkest Norfolk, where the nights have suddenly become chilly, and the elderberries are hanging in heavy, bloody bunches in the hedgerows.  It marks the end of a summer we have barely experienced, and not just because of the weather, which has, frankly, been ruddy awful here.

At this time of year I am inclined to be reflective, and this year all the more so, since at the end of the month I will turn 50, an age at one time I seriously never thought I would reach.  The same day will be the first anniversary of my mother-in-law’s death, after a long struggle with dementia.  There’s a lot to think about, as you can imagine.

This summer, I haven’t been very present on this blog for many reasons.  We’ve been in the process of clearing out mother-in-law’s house, ready for its new owners to move in, which has been a long and arduous project, requiring a great deal of travelling, complicated emotions and memories, and an uncountable number of visits to the city dump and various charity shops.  I won’t bore you with the details except to say that two old ladies living in a large three bedroomed house for 28 years can accumulate A LOT of STUFF.

In the midst of juggling estate agents and solicitors, my husband was called in for a routine hernia repair operation, which went well, but immobilised him for a period.

Then, inconveniently in the middle of his recovery, I went down with what was subsequently diagnosed as Menieres disease, a condition of the middle ear which causes tinnitus, pain, hearing loss, debilitating balance problems and bouts of vertigo.

Anybody who thinks vertigo is just being scared of heights needs to be corrected.  It is when the balance mechanism in your inner ear goes haywire and your brain can’t orientate you in three-dimensional space.  The result is like having your head in a washing machine.  Vomit-inducing.  Try having a bout of that regularly for six weeks, and I think you’ll know why I haven’t been writing much.  Thanks, however, to the wonders of modern medication, I am now able to function like a normal human being again, an unbelievable relief.  I have even got my hearing and ability not to walk into large pieces of furniture back!  The fear that I might never hear again, that I might lose my balance permanently, has also faded.  Which is nice. And my husband is fully recovered, so that’s nice too.

My doctor told me she didn’t like the term ‘disease’ when she diagnosed me with Menieres.  She said it didn’t accurately describe the condition.  For me it described it perfectly.  The dis-ease within my skin.  The sense of being unbalanced, literally and metaphorically, as I negotiate this transitional phase of my life.  The stripping back of the extraneous.  There was no energy for anything unnecessary.  No energy spare for anything other than the basic functions of life.  Standing up.  Lying down.  Walking.  Eating. Sleeping.  Seeing.  And most demandingly of all, hearing.

It is amazing how, when life is cut back to the bone like that, when things you take for granted suddenly become unstable, lots of things simply are no longer worth the effort, and some are even intolerable.

I am no longer inclined to take any shit.  I am no longer inclined to care what other people think.  I am no longer willing to tolerate a victim mentality, either in myself or others.  I am no longer willing to do anything but be grateful for every minute of every day.

Yes, Menieres changed me.

The last year has been spent in the aftermath of Alzheimers, midwifing my husband through his grief, and coping with my own mother’s diagnosis with the same disease, an event which rocked my world off its hinges completely.  The trauma of caring for someone with that horrible affliction cannot be underestimated.  I am still dogged by the memory of my normally affectionate and amiable mother-in-law screaming down the phone at me that I was a thief and a liar, and in league with a secret government organisation that was trying to kill her.  Such memories are not easily processed.  By the end of this month, the house in which she spent her final years will be moving into new hands, and we will no longer have to face the feelings of dread driving into the village, which came from our weekend visits to care for her, not knowing what fresh dramas awaited us.  Not having to drive up that road any more will help, I think.

Alzheimers changed me.

This time last year, another life changed radically too.  My niece Phoebe was diagnosed with cancer, a rare and most serious kind that caused catastrophic blood clotting so desperate that her leg had to be amputated.  Her courage in learning to walk again, facing many surgical procedures, and now conventional chemotherapy after the months of oral chemo she has already been through, continues to astound me.  I’m sure she wouldn’t say she was being especially brave.  She is 32 with a lovely husband and two little children to live for.  She just wants her life back.  To me she is an inspiration.

Cancer has changed me too.

Through all this I have written, even if somewhat intermittently.  I have written in my journal, doggedly trying to stay sane through its ink-stained pages.  I have scribbled many writing practice sessions.  I have reflected and plotted in my writing notebook.  I have rediscovered myself after the blinding snowstorm of caring for my mother-in-law, and managed to cling onto myself in the subsequent whirlwinds of Menieres and family problems.  Through writing, I have remembered who I am, and then discovered I am more than I thought I ever could be.

And that is where I am now.

Changed.

I am not sure this chrysalis phase is over yet.  There is plenty more change to be negotiated, not least my own mother’s decline.

But just now, things are stable. Optimistic.  Grounded.  And, thank goodness, not spinning!

So I begin September, my birthday month, hopeful, and in the process of transition.  A transition that I hope to share with you, dear reader.

Thank you for sticking with me.

Happy Creating,

EF

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Creative Recuperation

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

 

Lemon Lessons

Hilarious card sent by our niece to cheer us up.  It worked.

Hilarious card sent by our niece to cheer us up. It worked.

You may have noticed a distinct absence of Evenlodeness on your dashboard lately.

This is because here at the Evenlode Burrow, we have been struck by a hail of lemons.

Yes, I was ill.  Quite ill. Verging on very ill.

And then Husband got diagnosed with diabetes and taken into hospital overnight.

This was, despite all expectations, a major shock.  Diabetes is endemic in his family, so we can’t say we weren’t expecting it, but somehow seeing him in a hospital bed still felt horribly distressing, not least because he is close to the same age that my father was diagnosed with terminal cancer.  Both my father and grandfather died at the age of 52, and Husband celebrates his 50th birthday this year, so the rational part of my brain sort of went AWOL.

Matters were further not helped by the fact that the doctors can’t decide which sort of diabetes he has.  Type 2 is what you would expect given his age, but apparently his blood tests are not clear.  Trust him to be awkward!  He could be either, so the quacks are going with treatment for Type 2 for the next fortnight, and if the tablets don’t work, reassessment will follow.  Cue uncertainty on an epic scale.

So many people have been telling me how their relatives live healthily with diabetes of either type, and believe me, I know, I know.  Husband’s brother has been living well with Type 1 for thirty-odd years.  I’m well aware that its not a death sentence, and that it could be a lot worse.

But it has still rocked our world.

There are, however, unexpected gifts even in this hail of lemons:

1) Yay for the NHS

Here in the UK, we have the National Health Service, and it is one of our national sports to complain about it incessantly.  But when the s**t really hits the fan, the NHS is there for you, BIG TIME.  Yes, we had to sit in a corridor for three hours the first evening, waiting for a bed to become free.  Yes, we had to wait two hours for a doctor to be free in order to prescribe two paracetamols for Husband’s headache.  And yes, the information we came home with was not what you might call exhaustive, to say the least.

BUT, and this is a HUGE BUT, we didn’t have to worry about paying for any of it, a fact that we were profoundly aware of, and grateful for, throughout the whole process.  We were treated with unfailing kindness and courtesy, and given everything we needed.  Husband came home with equipment and medications without paying a penny.  He can ring up for help any time he needs to.  He has a series of further support and assessment appointments to attend, none of them requiring him to cover fees.

To me this is a sign of a civilised society.  Anyone who thinks people should have to pay for healthcare needs to reassess their capacity for empathy, which is the key quality of a human being,  And anyone who has ever had a sick relative or partner knows just how important it is.

2)  Hey, I just stopped giving a stuff!

When the life of the person who is the centre of your world is threatened, suddenly everything becomes very, very simple.  All the things that seemed so important have now become completely irrelevant.

Please note the use of the word IRRELEVANT.

I no longer care about all the SHOULDS and OUGHTS that seemed so important to my future last week.  I don’t care about having the right filofax or whether the kitchen floor needs mopping, or what people think about the fact that I don’t work, but don’t look sick either.  I don’t care about not having a career at 47.  I don’t care what people think about me not having children or an income.  I don’t care about the piles of stuff we are keeping in the house. It doesn’t matter what people think of how I wear my hair. It doesn’t matter what I think of how I wear my hair.  It doesn’t matter if there is nothing in the house for lunch, or the DVD player gets bust – we’ll just buy another one if we have to. (We did!)

Because its all IRRELEVANT.

3) Pure Freedom

The consequence of all this IRRELEVANCY is pure freedom.

I can concentrate on being here, now, with the man I love, which is all that matters.

This is a freedom I have never been able to give myself.  The freedom to concentrate on getting both of us well.  The freedom to be myself and not worry about trying to start a business or get published or do all the other things that my friends and acquaintences think would be the sign of success, but mainly, the things that I put myself under pressure to do because I don’t think I am enough as I am.

I don’t have to think about any of that now.

My sole intention for the next year will be to get both us well, and to enjoy every single second of the time we have together however the hell I can.

Because nothing else matters.

4) Creativity Caveat

This doesn’t mean I am going to stop writing, or being creative.  Rather the opposite.  It frees me up from all the SHOULDS and OUGHTS.  I can do whatever I like, whenever I like, whenever I am well enough.  And I can concentrate on him whenever I need to.  I can use my creativity to process and express this new journey we are on.  I can enjoy doing it for the first time, instead of making it a labour of OUGHTS.  (In fact, I started a new story today.)  Its just that from now on, I don’t have to apologise for doing what I want.  All that matters is to be happy and healthy with the man I love.

Because when it comes down to it:

from @geraintgriffith on Twitter

from @geraintgriffith on Twitter

I don’t know where this journey will take us.  I hope that you will join me as I endeavour to go on using my creativity to live up to what is increasingly speaking to me as my own motto:

SPEAK YOUR TRUTH

In the meantime, I would like to say a heartfelt thank you to everyone who has supported us during the last week as we have negotiated this crisis.  To all our dear friends, supporters and readers, we owe you a huge debt of gratitude, and I hope that you know that if you ever need us, we will be there for you too, no matter what.

With love and gratitude to you all,

EF

 

 

 

The Tale of the Soapy Otters

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

What to do when Life interrupts (again)

I have to go travelling once more.  My mother is ill and I am needed to go down there to look after her.  My brother and his partner have been doing a sterling job, but its really hard and they could do with a bit of respite.

This is what you do when you have to.  You go and pick up your shovel.   And you get to work.

I need to remember to look after myself, as well as her, whilst I am there.  It is so easy to forget that you can’t care for someone else if you are exhausted and sick yourself.  And I can get that way very easily.

(Witness two hours spent in a freezing bathroom in the early hours of this morning with a poorly tummy.  Trust me to choose the coldest night of the year so far to have a stomach upset/nervous meltdown!)

I’m taking my creativity with me, though.

I’m going to have to be creative about how I get her to eat and drink enough (and drinking enough is a real issue with old ladies.)  I’m going to have to be creative about how I keep her entertained and lift her spirits. (Hello Scrabble, crosswords, endless episodes of Miss Marple.) And I’m going to have to appear to be relentlessly optimistic (even though a part of me inside is a gibbering toddler afraid of losing her mummy.)

I’m tired just thinking about it, and thats without the fact that I only had three hours sleep last night.

But there are thousands of people out there right now who are doing exactly the same thing.  Caring for their elderly relatives.  Coping with looking after those with chronic illness or dementia.  Wrestling with the health care system.  Trying to face inevitable grief.  People like you and me.  A silent army of carers that is only going to get bigger.

In the face of this upheaval, I don’t know when I’ll have the chance to post again for a while.  I ask you to bear with me. I’ll be back soon, I promise.  The nib of the pen doesn’t stop moving, after all, and neither does the Muse,

Happy Creating,

EF

 

Learning the Lessons

Footprints Ardnave 1I have to admit to being a bit nervous about posting again.  Which is silly, really.  But last week’s battering has really knocked my confidence, and the events of the intervening days have been a rough ride.

But just when you think you can’t cope anymore, the Universe hands you a rose.  This time in the shape of Pola’s loving and kind comment on my last post:

“The reason I’m writing is to let you know that I really appreciate your talent in writing. I appreciate your devotion to your craft and your desire to help others in developing their own style and creativity. So whatever you decide, I just wanted you to know that I think you’re an important voice in the world of writing and that I hope you never give up in your endeavor to have your voice heard. This world would be less without it.”

Thank you so much, dear, dear Pola.  I cannot tell you how much this meant to me.

With your words ringing in my ears, I got back on the horse last night, and wrote a new story, 2207 words of trying something new with ‘Lewis’.  It was somehow important to start again with ‘Lewis’ given that it was a ‘Lewis’ story that caused all the trouble in the first place.  I don’t know where the story came from, it just popped into my head.  I don’t know if I’m ready to publish anything yet either, but it feels so good to be back in the saddle.

I was made to write.  I don’t know how not to.

Somehow, I’m going to have to learn to deal with criticism better, from the sort that is justified to the sort that is completely out of order.  Its very hard to do that when you are already in a tough place.

I realised that I posted the story because I wanted a confidence boost.  I wanted some good reviews to cheer me up.  And when I didn’t get them, got the reverse in fact, it knocked me over completely.

Important Lesson #1:  Do not post your fanfics just to get applause.

I posted ‘Not So Innocent’ on a whim.  I don’t have a beta, so it hadn’t had a second reader look at it.  There was no one to tell me that it had dodgey elements in it.  I had doubts about it, I have to admit, but I couldn’t quite put my finger on what they were.  If I’d had backup, maybe I would have seen its faults.

Important Lesson #2: Get a beta reader.

Preferably someone who knows the fandoms I write in, has excellent capacity for spotting my hidden prejudices, and my inability to cope with apostrophes.  I read last night’s creation to Husband (a stickler for apostrophes), which was a very useful exercise (reading your work aloud is always enlightening), but he doesn’t have the time to be a proper beta, and he’s got enough stress on his plate as it is.

I’ve always fought shy of having a beta because I don’t like the idea of the delay it involves.  I’m probably too protective of my work anyway, so having an editor would be good practise in stepping back, and would probably help me handle criticism better.  Plus I’ve had bad experiences with supposedly ‘helpful’ readers in the past.  And I know what a lousy beta I am in terms of getting around to reading other people’s work I’ve offered to read.

If anyone is interested in being a beta for me, and can offer a fast turn-around time, dedication to grammar and a fine eye for possible offending material, please let me know.

Its hard not to feel over-sensitive at this point.  I confess I am still very wobbly.  Things in RL are on shaky ground.  I’m trying to support Husband and his family members as best I can, while dealing with my own illness, and the onset of the most difficult time of the year for me in terms of mental health.  Taking it slow and looking after myself, so that I can look after him, is the best I can do.

Important Lesson #3:  Look after yourself.

And of course:

Important Lesson #4:  DON’T GIVE UP.

So thank you for your continued support.  One way or another, we’ll all get there.

Happy Creating,

EF

Deep Breath

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