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

Chapter 1: Giraffe Family

 

 "Chapter 1: Giraffe Family"

inspired by a photo by © Dave Jenike/Cincinnati Zoo & Botanical Garden

By Shiloh Moore July 2015

Mixed media

 Collage papers (including 'Chapter 1' page from a 'Babysitters Club book', and scrapbooking papers of music, leaves and hearts, and Paper dotted with ink using bubble wrap)

Layered with tissue paper,

then coloured with Watercolour

Image of drawing combined with background image using 'Picmonkey' online editing

Lots and lots of my friends are having children, so I've been drawn to pictures of families and pregnancy and children.  I was looking through Pinterest and found an amazing image of a family of giraffes.  There were no credits for the picture, but I google image searched and found this:

Giraffe Family

© Dave Jenike/Cincinnati Zoo & Botanical Garden

 

Firstly I drew an outline of my picture: 

Outline by Shiloh Moore 13/7/15

I was thinking of drawing the spots on the giraffes using zentangle patterns, but decided I'd like to try using mixed media, and to use the effect of bubble wrap dots to give a spotty effect.  I was not sure it would work, but was willing to give it a try!

I set up the backgroud papers:

 

I chose to use a page from 'Chapter 1' of a double-up of a beloved 'Babysitters Club' book  I had, to give the title 'Chapter 1' as the start of life as a new family with the baby Giraffe.  Those books bring me good memories of my childhood.

 

I had to lighten the image for the outline to stand out.  So I covered it with with crumpled tissue paper to give it a textured effect.

Here was a basic preview of what it would look like.  I was worried you couldn't see the spots.... But then I added colour.

Here was the background effect in colour.

Then by computer I added the drawing of the giraffes to complete the effect.  I don't know how to manually transfer the image onto the background, so in real life all I have is the background image, plus the plain outline drawing.  If anyone knows of a way to transfer them together manually, not just on the computer, that would be ace!

So here is the final product.  I'm not entirely sure the bubble wrap texture came through well enough, so I'm not entirely happy with it.  But it was a fun effort.  I may go back to the original drawing and draw in some spots with Zentangle techniques afterall.  But for now, I'm utterly exhausted and in a tonne of pain so I must ban myself from doing more for a while!!!! Happily so though :)

 

 

 

Living With ME and FM Series - Lying Down

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

copyright 2011 by Shiloh Moore

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.