ByShi: Myalgic Encephalomyelitis

Showing posts with label Myalgic Encephalomyelitis. Show all posts

Sunday, January 22, 2017

Obama Care

'Obama Care'

Jan 21-22 2017 by Shiloh Moore

14x20cm Pitt Pen on Paper

Products with this image can be bought here at Redbubble

I am an Australian with multiple chronic health conditions. My life has been saved by our world class health care system multiple times.

My main condition though, ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) is largely neglected worldwide. I have friends with ME in the US.

In March 2012 a couple, Courtney and Bob Miller, at a town hall meeting in Reno, Nevada, asked Obama to increase the funding and research for ME in the US. Obama promised he would investigate what the NIH (National Institute for Health) was doing about ME, and he kept that promise to elevate the priority of ME/CFS in the US.

We have just seen the next president's Inauguration and marches for women around the world. I was not well enough to march, but instead I turned the TV off and drew Michelle and Barack Obama in gratitude for the impact they have made globally. I drew most of this portrait while lying down.

I stand with healthcare (especially treatment of people with ME/CFS,) women's rights, race relations, multiculturalism, LGBTI rights and with the marginalised.

The world is watching, with bated breath.

'Obama Care' process photo

22 Jan 2017 by Shiloh Moore

Facebook @byshi.art

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Photo of Michelle and Barack Obama - credit unknown. I printed it from the website:

http://www.newsbusters.org/blogs/katie-yoder/2014/12/05/nausea-alert-barack-and-michelle-obamas-love-story-coming-theaters

Sunday, November 20, 2016

Sending Spoons - I Hope You Are AWAP

'Sending Spoons'

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!

Tuesday, September 27, 2016

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'

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/bysh i

Sunday, March 13, 2016

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’

(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

Saturday, September 5, 2015

...What If All Goes Well?

'...What If All Goes Well'

5/9/15 by Shiloh Moore

Wording digitally added to

'Mixed Media Background'

Something I've been saying to myself when my mind whirrs with fear of what's to come...

"Oh but, my darling... What if all goes well?!!!"

...

Wednesday, August 5, 2015

Inner Journey

'Inner Journey'

A4 Pitt Pen on Watercolour Paper

In June 2014 I drew this image of my inner journey - a personal piece, working from right to left, journeying from my wounded inner adult, to my inner child. Firstly my inner adult was crying, hugging herself for comfort, then on her knees weeping, then crying out. Secretly this was how my inner adult was feeling at the time. I was more than just frustrated with living with severe long term chronic pain and illness, deep down I was hurting.

This drawing was a breakthrough. As I moved through the positions of my wounded adult, I finally came to an image that brought me great comfort - even delight. Finally, I embraced my inner child. I bent down to pick her up and she reached up to me for comfort. At this moment we both needed each other to heal. And we now had each other. I felt whole. In my imagery we went on to dance with each and have something I hadn't experienced in quite some time - fun!

I published this image of my inner adult and inner child on my blog at the time, entitled 'Embrace Your Child' on Sunday July 6 2014. At the time the full image of my 'Inner Journey' was too personal for me to share. Now I feel I can. The journey from my hurting adult to embracing my child is a healing journey that I continue to feel in a cycle.

I love reaching that final image of me embracing my child - it is so healing for me. When I'm struggling I picture this image and it gives me great comfort.

Tuesday, December 31, 2013

where there is life there is hope

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

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)'

The pastel images:

Green Pastel

Pink Pastel

Tuesday, September 17, 2013

My Precious Body

'Resting Peace'

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'

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.

Sunday, September 15, 2013

Sympathy Blossoms

'Sympathy Blossoms'

4"x6" watercolour and pitt pen card

A friend asked if I had any cards for the purpose of Sympathy cards. I realised I didn't.

I haven't been well enough to get out the acrylics and do a big painting, but I thought I could try a small watercolour.

I've been noticing cherry blossoms and how beautiful they are and wanted to paint them. I didn't have 'real life' ones so I drew from photos.

I have been reading a beautiful book by Marie Williams, called 'Green Vanilla Tea.' Marie's husband Dominic struggled with Alzheimer's and died in his early 40's. The book is a memoir accounting both the incredible struggles and the wonderful memories of life with Dominic and their two sons Mike and Nic. The love in their family is powerful. It is touching to read.

Cover of 'Green Vanilla Tea' by Marie Williams

(used with permission)

http://mariewilliams.com.au//

I have 'met' Marie Williams online and I dedicate this sympathy card to her and her boys.

I drew the blossoms on my sympathy card, guided from the photo on the cover of the book 'Green Vanilla Tea', only from the other direction and with other colours.

I chose the colour of the blossoms inspired by cherry blossoms in a photograph by a friend, Josie Eldred of -love to be young photography- . I am a huge fan of her beautiful photography - she does the most amazing macro work, and it's even more amazing because she, like me, struggles with ME (Myaglic Encephalomyelitis) and has done since a very young age. So her work is out of passion and painful determination like mine. I loved her macro shot of cherry blossoms

in pink and this inspired the colours of my cherry blossoms on my card.

#cherry blossom #macro

(used with permission)

website: http://www.lovetobeyoungphotography.com/

facebook: -love to be young photography-

So I dedicate this card, with sympathy especially to Marie, Mike and Nic. Also to all who suffer or care for those struggling from chronic illness, especially those who have lost their loved ones.

'Cherry Blossoms'

Original 4"x6" watercolour and pitt pen on paper

Friday, May 11, 2012

ME Awareness Day

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

Wednesday, May 2, 2012

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

'Do What Gives You Life' Scrabble letters 2012

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

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

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.

Saturday, March 10, 2012

"I Am"

I have been in a bad patch health wise, unable to do any art for a month. I've been dreaming of lots of projects, itching to try mixed media again, and a stencil painting, but I don't have the strength to do either. A couple nights ago I was able to do some drawing lying down, and, while I imagine a grand large mixed media project from it, for now I have used watercolour.

"I Am" A4 Watercolour on Paper (c) 2012 Shiloh Moore

"I Am"

copyright 8/3/12 by Shiloh Moore
While my body's wracked
With pain and exhaustion
of an indescribable magnitude...
Unable to do anything but lie here,
Hours, days, weeks on end...
I am...

I am the flute goddess I've always dreamed of being
I am flying free,
Filled with unearthly beautiful music.
I am beyond this broken body...
I am content and at peace.
I am okay.
I am...

Wednesday, January 18, 2012

Living With ME and FM Series - Lying Down

'Living with ME and FM Series - Lying Down Collage'

This is what the majority of my life is like. I sleep on average 14 hours a day, and most of the rest of the day is spent lying. To me this is natural - it is how I have lived my life in private since the age of 15. When people see me sitting up it's for a brief outing after which I return to the lying position. These illustrate my life in bed:

1) 'Lying With Fibromyalgia' - copyright 2011

by Shiloh Moore
I have pain always. Even lying down exacerbates the pain. Sitting and standing are always painful. When I'm in a bad pain flare lying gets unbearable too. I continually have to change positions until I'm in the least pain. Resting alone does not take the pain away.

2) 'Lying Reading' - copyright 2011 by Shiloh Moore

This is a rare pleasure. It is painful to hold books, difficult to concentrate and take in what I am reading. I go in and out of 'reading space'. The precious times I can read are priceless!

3) 'Lying Listening' - copyright 2011 by Shiloh Moore

I often listen to soft music. When first bedridden I used to choreograph dances in my head. But even thinking of this was exhausting so I'd have to stop the music. Other times my sound sensitivity would trigger complete exhaustion and drain my energy so again I would have to turn the music off. Nowadays I can usually handle music softly to pass the time.

4) 'Lying Writing' - copyright 2011 by Shiloh Moore

When I'm up to writing I most often write lying down. When I'm not well I write pressing matters in note form. When I'm going well I'll write a letter or journal entry. When I finished high school and attended uni briefly I did all study lying down.

5) 'Lying Typing' - copyright 1998 By Shiloh Moore

When I was bedridden in the 90's and was slowly improving, I wrote my book, typing on my laptop, lying down. I knew how to touch type so I'd close my eyes and type, then check and save my work.

6) 'Lying Talking on the Phone' copyright 2012 by Shiloh Moore

I take most calls lying on my bed with a headset on the phone so I don't have to cramp my arms holding it.

7) 'Lying Pondering' - copyright 2012 by Shiloh Moore

Last year when I first released these images, 'healthy' friends commented how it made them realise I did everything lying down. They didn't realise that most of these things I did on 'good' days. Most of the day I need to rest completely - and by 'rest', I mean fully switch off and do nothing. No TV, no music, no talking, nothing. I wanted to add this last picture to illustrate what I 'do' most of the time: 'Lying Pondering.' Most of the time, in the silence, and for hours on end, I have perfected the art of lying in solitude, thinking, pondering, and processing. I think deeply and most of the time I am bedridden, I am surprisingly not bored. My thoughts entertain me, I am busy thinking through my grief until I accept how things are, and then I ponder life and am grateful and happy just to lie there and 'be'. After all, I am a human 'being' not a human 'doing'.

Over the past year I have been able to sit up more - but this is still limited to about 4 hours per 'good' day. But I am so grateful for this. I can sit up and make cards or paint or socialise for brief periods and this brings me such joy. I still call it 'sitting up', never 'sitting down' as it is always an effort and never 'relaxing.'

I still have pain flares which set me back for no reason for weeks or months on end. But when they ease, and I can sit in relatively less pain, life is so much easier and more fulfilling.

So there's an insight into the life of someone with ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) and Fibromyalgia.

Note on Awareness Day, May 12, 2013:
I would like to add that when drawing this, it felt like I was drawing the mundane of daily life. It wasn't until I showed it to my mum that I realised this is not how most people live! Living 'upright' all day is as bizzare to me as lying down all day is to most people. I have lived this way since I was a child/teen so I barely remember living any other way.

Welcome to ByShi, Art by Shiloh!