Just Another Day – with EDS & POTS

 

Just Another Day pin

 

The world feels off kilter

I’m spinning…..round and round

Every time I lift my head

The snow  descends, engulfs me

At times it overwhelms me

And then, bang, down I fall.

 

Lucy EDS 1

 

Falling, falling, twisting down

How long it takes to reach the ground

Slow motion into blackness

Nothingness

Painless

Floating.

 

Pain, pain, pain

Why am I on the ground?

A twist here and a bend there

Limbs entangled, joints at angles

Unnatural, except for me

Stretch and snap is the norm.

 

Lucy EDS 2

Salt, water; water, salt

Compression to limbs.

Like an autumn leaf

I fall and break

My body fragile, unstable

Just another day with EDS and POTS.

POTS & Me

 

 

 

 

Unforeseen – Life’s Curve Balls – coming fast and furious

It has been one of those weeks where nothing has quite turned out as we thought it would – the culmination of some tricky events that have escalated over the summer.  I can’t write about them yet – they aren’t just mine to tell.  But the impact on the family is great and a dash up the motorway has left this body feeling more decrepit than ever.  Chronic pain is flaring and spiralling.  Emotions are flipping between tears of worry and screams of anger; a lack of sleep and a definite lack of concentration is overwhelming.

I am sorry to have missed Monday Magic yesterday.  This poem that I found by Patricia Grantham seems appropriate!

Lifes Curve Balls - Poem by Patricia Grantham

A Park Visit – Daily Prompt : Glimmer

Someone opened the door today

And out I went into the world.

The sky was grey and the earth was wet

A chill in the air permeated my bones.

Nerves and joints hurt so bad

The titanium inside felt icy cold,

Pains misfiring and doing battle

With the pulses of current sent

To stop them in their tracks

From the electrode sleeping

Against my spinal cord.

Someone fought the cold todaySONY DSC

As the park cafe beckoned,

A small alcove housed my wheels

And provided shelter.

Whilst an external heater,

At the lightest touch of a switch,

Spilt a glimmer of light and warmth

To wrestle with the cold world.

 

Daily Prompt – Glimmer

 

Daily Prompt #Explore – My Brain Fog

How can I explain to you my brain fog, dear friend?

Come with me and explore the opiate shaped holes in my mind

Move inside my skull, around my head and explore

The maze of cotton wool corridors.

Think of what you have just left behind you,

Explore around the next corner,

And then turn back.

But the fog has enveloped that last thought

And we are lost,

To explore no more.

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Drawing by Lucy, Zebra Girl (wasc.uk/zebragirl)

 

Daily Prompt : #Explore 

 

 

 

 

 

 

 

 

 

 

 

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My Guest Post on “You are Awesome” Love Letter – Do You Remember?

Last week I was thrilled to be featured on Angela Noel’s blog “You are Awesome – Celebrating Inspiring People and Interesting Ideas” as her regular Love Letter guest post.

This is actually a poem that I wrote over 14 years ago for one of my closest friends, who had just died after a 2 year battle with breast cancer.  We found ourselves in a situation that I could never have envisaged as our close friendship became one of nurse and patient.  I was recognising signs and symptoms before they were diagnosed, and I encouraged her to accept a referral to my place of work for palliative care.  The day that I called my consultant to arrange for her to be admitted and then called her hubby to tell him, I went home and sobbed.

The next day I donned my blue dress and I went to work to care for my patients and my friend.  I was the nurse in charge and had to be professional, but after handing over to the night shift I couldn’t stop myself from begging the night girls to take good care of her.  She came home the next day, a Saturday, and died at home the early hours of Tuesday morning.  She was 37 and had the most beautiful smile in the world.

Please visit Angela’s post to read my full poem:

Love Letter : Do You Remember?

and have a look around the blog as Angela is one of the most inspirational and beautiful writers that I follow.  Thank you Angela for having me!

The-MondayMotivation

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Post Comment Love

 

Ode to Excess

My lovely friend Cathryn wrote this little ditty that we hope will amuse you all!

Ode to Excess (December 2017):

How many years have we said at this time
We’re not going crazy, just a few gifts are fine.
The kids have so much, they don’t need a thing
We’re lost for inspiration, the money does sting.

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Determined to stick to the rules that we’ve set
We proudly congratulate ourselves not to get
Handfulls of gifts from Poundland to fill
Stockings and boxes, a bitter sweet pill.

Yet here we are a week yet to go
We’re edging close and even had snow.
The doubt starts to niggle, we wrestle our minds
“maybe just one more” gift we can find.
One turns to two to three and to four
Then Amazon calling and banging our door.

Panic sets in, have we equalled the spending
Presents still coming, bank balance bending.
Wrapping in secret, while the kids are asleep
Shoving up lofts and cupboards in heaps.
Convincing yourself the spend isn’t too great
Hiding receipts and getting into a state.

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Last minute guilt buys for mum and for dad
They’ve leant you money all year but if you don’t you’ll feel bad.
Passing the shops and buying one more
Rushing back home to find somewhere to store.

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All under the tree and ready to go
Kids are oblivious how little they know.
As you rock in a corner clutching a gin
Maybe next year you’ll be strong, not give in.

by Cathryn Watters

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I Am Here

I am here,

Do you still see me?

My heart is beating

Within my broken shell.

A mind is playing

The words of a lifetime

The will is surviving

To write a legacy well.I Am Here pin

Am I succeeding?

Am I still growing?

In spite of a body

That creaks with pain.

My mind is creating

My will is still flowing

To harness experience

For a generation to gain.

I may be unseen

Not always present,

But can you still see me?

Here I remain.

Claire Saul

School Runs and Shopping Trolleys

My Monday Motivation to remind myself and others that no matter what, I can still make a difference!

Monday Magic – Inspiring Blogs for You!

Good Morning and welcome to another week, another Monday Magic and some more great blog posts to explore!  Monday Magic

Here in England the schools return this week, much to my daughter’s disgust, and it feels slightly odd that we only have one child still at school.  I have almost missed the ritual trip out to buy school shoes and stationary, but my 15 year old doesn’t need me for this any longer.  Note that I have said ALMOST, not really missing queuing up with a numbered ticket in a branch of Clarks along with a bunch of harassed mums and boisterous children……however there are going to be some shopping lists I should think, ahead of the soon to be politics student going off to uni in a couple of weeks.  He is more concerned about his football season ticket and joining the Facebook freshers’ group than how many sets of bed linen and cutlery he might need. Who am I kidding? One set of bedding will last the term, won’t it – there is no way my 18 year old son will change it of his own accord, YUK!

Moving on swiftly, September is Chronic Pain awareness month and naturally with my background I will be mentioning it….just a few times!  This week also happens to be Fibromyalgia awareness week – which falls under the chronic pain umbrella – and Kat writes about this over on Chronically Composed – a Scottish journey with Chronic Pain.  The other posts I have found this week include a back to school guide, an emotive poem about depression (you can see I have commented on it), a young dad struggling with illness and surgery whilst raising his family, and a face that many of you are already familiar with – Danny from Dream Big who is currently concentrating on his Youtube channel and MS awareness.  Plus a great post looking at what is more important in blogging…numbers or friendship?

But to kick off I have kindly been given permission to bring you this fun poem from Anna on Healing Hugs and Hope blog……

An Ode to My Heating Pad

Oh, heating pad,
 your warm hugs ease
my aches and pains.
I need your healing squeeze
When my feet get cold,
or when I get one of my migraines.

From arthritis to subluxations,

you’ve nursed me through.
When I find my muscles tied,
I cuddle up to you.
It’s so nice and toasty,

with you by my side.

Due to my poor circulation,
I’m often very cold.
When my thyroid acts out,
you are too hot to hold.
Still, you know I’ll be back,
  it’s your gentle hugs I’m mad about.
If you love your heating pad so much, why don’t you marry it? Well, maybe I will….

A Silly Poem for People with Chronic Illness by Anna Ottlinger HEALING HUGS AND HOPE

So now time for feet up, cuppa in hand and enjoy some great posts!

https://chronicallycomposed.wordpress.com/2017/09/03/my-fibromyalgia-awareness-week-2017/

https://thezebramom.com/2017/08/24/back-to-school-guide-for-parents-with-chronic-illness/

http://lifesapolyp.blogspot.co.uk/2017/09/dialectical-behavioral-therapy-for.html

http://angelanoelauthor.com/inspiration-motivation/be-awesome-in-real-life/what-matters-more-numbers-or-relationships/

http://channongray.com/talk-mental-health-awareness-stigma/

https://thisreallifedad.com/surgery-going-knife/#comment-332

http://www.homeschoolinsights.com/2017/09/trials-of-chronic-illness.html

http://www.weareholistic.com/mental-health-care/might-call-depression/

 

I really hope that you enjoy these as much as I have – and had a giggle at the poem from Anna. It appealed to me as I really can’t go anywhere without my heating pad!  Please explore the blogs leave some messages and share posts you enjoy.

Claire x

 

SHE….being invincible in pain

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My lovely girl drew this image for me of our pain, different for us both but with the same underlying genetic cause, and these words by poet Ariana Dancu seemed to fit perfectly in rising above the flames of pain.

It has been a tricky week as the family visited my husband’s parents,  but I was too unwell, sporting a chronic dislocation & increased pain, to make the long car journey.  Instead I remained at home where I was able to relax, stay in my PJs and binge watch Netflix, but had to rely on my parents to look after me.  Talk about feeling like a teenager again……

Lucy’s picture really depicts how my different pains have been all consuming this week….and yes, I am still sporting a snazzy velcro sling!  Hopefully there will be a real post tomorrow!

Today, You beat Me

Today, You beat me,

I woke with You again

Wrapped about my back like a lover,

Pulling at my limbs

My shoulders splayed

My joints pulled with gravity.

 

Today, You never let up.

I tried to lose You

But You brashly force out the monster,

The worst version of myself

Cross and bitter,

My loved ones suffer.SONY DSC

 

Today, You rob me.

My time is destroyed,

I cannot sit and idle in peace

For my body betrays me,

As you are with me

Within, trapping me.

 

Today, You beat me.

My body is weakened

And tears have fallen as spirit breaks.

So, so tired, no way back

I am bereft.

Pain, You have won.

 

Claire Saul