Sending Spoons - I Hope You Are AWAP

'Sending Spoons'

© 5/11/16 by Shiloh Moore

8"x10" Zentangle Pitt Pen and Paper Collage

Cards and products with this image can be bought here from Redbubble

This card is a Zentangle Collage called ‘Sending Spoons,’ for my friends with chronic illness. 

There is an analogy used to describe life with chronic illness by Christine Miserandino called 'The Spoon Theory.' (read in full here: 'The Spoon Theory' written by Christine Miserandino for www.butyoudontlooksick.com )  Christine has Lupus, but many with a variety of chronic illnesses and 'invisible' disabilities identify with it, and affectionately refer to themselves as 'Spoonies.'  

In her analogy, spoons symbolise energy (also pain threshold.)  A person with chronic illness only has a certain amount of energy per day, so only a few spoons.  Every task takes a certain number of spoons.  Often, you don't know how many spoons you will have throughout each day so you must be wise with how you spend them.  If there's something you have to do that day, you must keep enough spoons for the task. You might have to give up doing something else in order to have enough energy to do what you need to do.  You learn to prioritise what you spend your ‘spoons’ on.

Many with chronic illness also use a phrase to sign off messages with - 'I hope you are AWAP'.  AWAP stands for 'As Well As Possible'. 

So I came up with this pic 'Sending Spoons' using Zentangle patterns on spoons, with the phrase 'I HOPE U R AWAP.'  

(I also like how there's 5 horizontal spoons, so to me, I also see a mini musical staff!  Energy is musical!)

Thanks for using your spoons to read this.  Sending you spoons, and I hope you are AWAP!

Life with ME: Spot the Difference - "Weekend Girly Coffee Date"

LIFE WITH ME:
SPOT THE DIFFERENCE - 

‘WEEKEND GIRLY COFFEE DATE’

© 2016 by Shiloh Moore 

Prints of this work can be found at my Redbubble site here:
Spot the Difference PART A  - Image
Spot the Difference PART B - Words
 http://shilissimo.redbubble.com

Today, Sept 27th 2016, is the second international day of action by #MEAction promoting awareness and change for the #MILLIONSMISSING (around 20 million people worldwide) with ME, Myalgic Encephalomyelitis.   Note that the Australian day of action will be held in Melbourne in 2 weeks, on Wednesday 12 Oct 2016, from 1-2pm at Parliament House, East Melbourne, Vic, 3002 Australia.   

More information about the campaign, and ME, can be found here: http://www.meaction.net/

This 'Spot the difference' cartoon is my contribution to spreading insight into the disabling condition that I have had for more than two and a half decades.  

Here is the wording to go with the illustration:

LIFE WITH ME:
SPOT THE DIFFERENCE - 

'WEEKEND GIRLY COFFEE DATE'

 © 2016 by Shiloh Moore 

PERSON A:

“You look great!  But you don't look sick.
I feel tired all the time too,

maybe I have chronic fatigue? Hahaha!”

30 something married mother
+ career woman:

1) Frazzled long hair from morning gym session

2) Pretty dress + make-up

3) Heavy jewellery

4) Favourite perfume
5) Large slice of cake

6) High heels

7) Feet sore from standing and walking all morning

8) Shopping bags from browsing before coffee date

9) Barely able to sit still

10) Car keys for driving

11) Coffee date is the 5^th of 10 events today

=  Is healthy but overworked

PERSON B:

(Smiles awkwardly)

30 something single woman with no kids
+ no job:

1) Bed-hair, cut short because it causes pain

2) Comfortable clothes + no make-up - no energy for fuss

3) No accessories as they trigger pain

4) No scents or chemicals as she is sensitive and reacts
5) No cake due to food intolerances

6) Flat shoes with orthotics

7) Feet sore from standing at all

8) Just got up at 10.30 in time for coffee

9) Barely able to sit up long enough for a brief cuppa

10) Driven door to door by a carer

11) Coffee date is the only non- medical outing or visit from a friend all week. 
She will need to go home to rest immediately after.

=  Has moderate ME (Myalgic Encephalomyelitis) and FM (Fibromyalgia Syndrome)

Shiloh Moore can be contacted on her webpage here:  www.shilohmoore.wix.com/byshi

Poem: 'I Dream Of Simple Things'

Some healthy people ask what it's like to live with severe ME/CFS and Fibromyalgia.  Living with severe chronic illness my dreams are simple.  Conquering basic tasks become monumental achievements and things to be celebrated.  Here I try to describe just a few of my dreams:

‘I DREAM OF SIMPLE THINGS’

© 2016 By Shiloh Moore

  (13/1/16)

 

I dream of doing simple things

Even chores and basic tasks

Like to do things independently

And not always have to ask

I’d like to really cook

And not just have to defrost

To eat sitting up with company

And painlessly consume without cost

To have a daily shower

And shave my legs with ease

Clean my teeth for two whole minutes

Tame my wild hair to look less teased

To do all my own shopping

For groceries and necessities

To buy my own choice of things

And treat myself occasionally

To be able to sit up for visitors

Not to have to lie down all the time

To go out for coffee or a social meal

And stay for a decent while

To create art while sitting up

With no need to lie down throughout

To have freedom to fearlessly create

Without a long term pain payout

To type while I can sit up

For as long as I wish each day

To use a phone to text and talk

Without dead arms, neck cramps, and strain

To walk a fair distance and stand

Without instant pain and feeling faint

To exercise and feel good

To help with my Diabetes and weight

To need less than fourteen hours sleep

And to wake up feeling strong and refreshed

To feel bright and alert every day

Rather than tired and needing rest

To lie down perfectly still

Yet to feel no intense constant pain

Is an experience I have forgotten

And can only dream of knowing again

To be able to joke and to smile

With no face pain limiting my laugh

To talk comfortably, to be truly me

Is this really too much to ask?

My dreams may seem very simple

But I’ll celebrate if any come true

The truth is I appreciate all I can do

And I try not to fear losing that too

Disclaimer:  Feel free to share this link, but please do not reproduce this poem without consent from the author. Shiloh Moore can be contacted at her website at:   http://shilohmoore.wix.com/byshi

Poem: "A Place That I Go"

From age 16 to 23 I wrote poetry, and in 2004 self published a book, 'Stranger In The Moving Chair' (still available to buy via the contact page of my website http://shilohmoore.wix.com/byshi )  The last poem in the book was the last poem I wrote.  It closed a chapter to my life.

I wrote a few more poems 6 years later, but again stopped writing, and focused on artwork. 

2 nights ago I felt I'd really like to write something again, and while lying down, I got out a pen and paper.  I usually write free verse (not rhyming,) but I wanted to see if I could write something that rhymed.  It poured out of me, and 20 minutes later this was what I had written: 

“A Place That I Go”

© 2015 By Shiloh Moore

17/11/15

(Age 35)

Despite constant pain and

Despite all the fears,

Despite the frustration

And the many tears

Over all these years

I have slowly grown,

To accept, and know a place

I can go on my own

Where fears are calmed

And inner peace pervades…

Where I love my life

Despite the pain that invades

I feel ‘held’ by hope

By strength, in reflection

And am ultimately moved

By a strong connection:

Despite the isolation

And no ability to travel

To see the sights nor

Be involved in person

Nor ‘contribute to society’

On a monetary level

Or to live my life

To its full potential

I long for a life partner

To share life and to intimately know

And I grieve for our children

Whom we’ll never nurture as they grow

In my fantasies

I have the strength and the power

To talk endlessly with friends…

Or at least for more than under an hour

Despite all this I feel I belong

To this universe, and to all humanity

Even in deafening solitude

I feel innate purpose, I feel free

I am grateful knowing this place

Where I not only merely exist

But live satisfied with all I have -

This gives me strength to persist

It's hard to imagine
Living this way
For the rest of my life...
Till I'm old and grey

So I live in this moment,
And block out the pain
I go to this place
Where deep down I'm ok.

The pain overwhelmingly aches

But deep within my soul

I know of this place, where

Within this life, I feel whole

Disclaimer:  Feel free to share this link, but please do not reproduce this poem without consent from the author. Shiloh Moore can be contacted at her website at:   http://shilohmoore.wix.com/byshi

'May Peace Be With You' 2016/17 Calendar

'PEACE Dove (May Peace Be With You)'

2016/17 18 Month Calendar

© 2015 By Shiloh Moore

A4 Spiral Bound 

The calendar costs A$25 including postage within Australia.
Overseas postage available on request.

To order, please contact Shiloh at her Website Contact Page Here:  

http://shilohmoore.wix.com/byshi

Inside: 18 months including:

 'Dragonfly'

© 2013 By Shiloh Moore

Featured in May 2016

and

 'Busy Owl'

© 2011 By Shiloh Moore

 Featured in June 2017

Including 3.6cm x 2.8cm rectangles to write in.

Finishing with:

'PEACE Dove (May Peace Be With You)

© 2015 By Shiloh Moore
Featuring an overview of 2017 

On the back:

Collage of some (not all) of the Included Artworks

All artworks © By Shiloh Moore

Over the past year my health struggles have been building and truthfully, quite scary.  Over the past few months in particular I have not been well enough to create any new art and have been in bed most of each day, in constant excruciating pain.  

With every ounce of being I have put energy into creating this calendar, with generous support from my folks and friends at greenridgepress.com.au  Back in 2004 Greenridge Press also generously printed my book of autobiographical poetry, 'Stranger In The Moving Chair,' of which I still have copies for sale.

All artworks included in the calendar have been created over the past 5 years while I've been housebound - at best able to sit up for less than 4 hours throughout a day.  

I am so happy to be able to spread love into the world this way and be a presence in peoples' lives even from afar. 

May Peace Be With You.

where there is life there is hope

 'dum vita est spes est (where there is life there is hope)'

Pastel image copyright 2013 by Shiloh Moore

An amazing man with very severe ME for decades now, recently wrote to me 'All is not bleak though, ...' 'Where there is life there is hope.'  

This blew me away and the quote (taken from the latin 'dum vita est spes est') really connected with me.  

I haven't been well enough to do any big painting or major artwork, but the quote inspired me to sit up to do these two quick (2 minute) pastel drawings, to bring the Latin phrase to life. 

I like to contemplate life and hope as the new year approaches.  May 2014 and beyond be filled with peace, love, joy, hope and as good health as possible. 

 'dum vita est spes est (where there is life there is hope)'

Pastel image copyright 2013 by Shiloh Moore

The pastel images:

 Green Pastel

copyright 2013 by Shiloh Moore

Pink Pastel 

copyright 2013 by Shiloh Moore

My Precious Body

'Resting Peace'

copyright 1998 by Shiloh Moore

Watercolour on A3 paper.

I painted 'Resting Peace' 15 years ago when I was 18 and dependent on a wheelchair to leave the house, recovering from a full year totally bedridden barely able to talk or eat or sit up.  My mother bathed and fed me during this time and even this was a mammoth effort for me.  The blues and purples in the outside of the picture represent the ease of the world, the beauty outside of my body.  The reds of my body represent pain and discomfort, blood stagnant and aching all over.  This was my rest.  I would try to tune out the pain in my body and see if I could notice and take on the outside stimulus of the gentle blues.  Mostly I was overwhelmed with the pain.

At this time I hated my body as all it brought me was pain and exhaustion and thousands of terrible symptoms.  I felt caged in this body, trapped, being tortured, no way out...  

Now, 15 years later and still experiencing extreme pain constantly, I realise it's not my body that confines me and causes me grief.  My poor little body is so weakend by this powerful illness and yet it still keeps going, keeps fighting, keeps me alive to experience the love, small joys and simple pleasures of this wonderful world.  It allows me to experience existence.  

My body is not a cage trapping me in torture, it is an amazingly strong and resilient beautiful marvel coping with a massive load while still helping me experience this life, which beyond the illness is precious.  My body's a fighter, powerful and valuable.  Oh little body how I love you.

When I'm in a lot of pain I now talk to my body, encourage it kindly to keep going, thanking it for surviving thus far, asking it to continue.  The other night I couldn't sleep due to pain so I lay awake talking to my body giving it love.  I wrote this:  

"My Precious Body'

copyright Shiloh Moore 15/9/13

Precious brave body

keep fighting

You deal with so much

such a heavy load

for such young shoulders

Keep on Keeping on

Look after you

Stay strong - 

You can do it.

You live so broken

so frail

so invaded

yet you survive

and continue to live 

using great strength.

You experience life so richly and deeply

even when you are forced to have bedrest,

hour after hour, day after day

My body:  You Belong.

There is purpose for your being.

How powerful and strong you are

Despite feeling so helpless

frustrated and overwhelmed,

pained and utterly exhausted.

You are amazing

You are precious

Keep fighting beautiful one

Oh little body how I love you.

'She Flies on the Wings of her Friends'

'She Flies on the Wings of her Friends'

(c) copyright 2012 by Shiloh Moore

Mixed Media on Paper

Completed 18 May 2012

 In gratitude to all my family and friends who lift me with their love, support, thoughts and prayers and help me fly.

ME Awareness Day

 "Be...Together = Comfort" (c) 2012 by Shiloh Moore

When in pain and exhaustion of an indescribable magnitude

It hurts too much to talk

But the comfort of your

Company is powerful.

May 12 is International ME (Myalgic Encephalomyelitis) Awareness Day

'Learn To Choose Your Pain' and 'Do What Gives You Life'

'Do What Gives You Life' Scrabble letters 2012

on 'Butterfly Abstract' (c) copyright 2008 by Shiloh Moore

 

‘Learn to Choose Your Pain’ and ‘Do What Gives You Life’

(c) copyright 2012 by Shiloh Moore

I’d like to share with you two phrases I have developed over years of living with Chronic Illness.

First is a phrase I coined when in my teens, for those of us living with chronic illness (but obviously not totally bedridden): ‘Learn to Choose Your Pain.’

With chronic illness, Fibromyalgia and Myalgic Encephalomyelitis, you are always in pain.  You are never pain free.  To keep your spirit surviving,  it helps to prioritise what you spend your precious energy on.  Learn to Choose Your Pain. 

 'Learn To Choose Your Pain' Scrabble letters 2012

on 'Black on Abstract' (c) copyright 2008 by Shiloh Moore

I started thinking about this before I was diagnosed, when I was 14 and struggling to attend school having been unable to play my flute for months.  I came across a strange dilemma:  I had a ‘good’ day, when I had a rare glimpse of precious energy after school one day.  I found myself wondering, should I be a ‘good’ girl and do my homework, or could I spend this energy playing my beloved flute?  Is ‘I had a good day yesterday’ a valid excuse for not doing my homework yet again?! 

After many more years of illness, I learned to prioritise.  I learned that to keep your soul satisfied, sometimes you have to ‘choose your pain.’  Everything with this illness hurts, everything you do triggers a payout.  So choose what you do to cause the pain, and here comes my second phrase: ‘Do What Gives You Life.’

Sometimes it’s worth getting in trouble for not doing homework, to spend that precious energy playing.  Do what gives you life.

Sometimes it’s worth having a friend visit even though the house is a mess.  If you have to choose between either seeing the friend or cleaning, do what gives you life.

Sometimes it’s worth doing some art/seeing a friend/going to a movie or concert/going on an outing in a wheelchair/seeing nature/insert something fulfilling for you, even though you know you will have a payout as a consequence.  Sometimes it’s these highlights to life, the things to look forward to and to remember, that keep us going.  Of course, pace yourself and don’t do something if the payout will be too extreme.  But if you can, prioritise what you spend your energy on and choose to be in the inevitable pain for something that is worth it to you.  Learn to Choose Your Pain, and Do What Gives You Life.

A healthy person can learn from this too.  Within your busy schedule and list of commitments and responsibilities, learn to prioritise.  Say ‘no’ to doing too many things that are draining, nurture your soul and Do What Gives You Life.