Victoria Payne. like myself, suffers with Joint Hypermobility Syndrome, which effects the entire body but often leaves you looking perfectly fine.
In this poem she expresses how it feels to live with this invisible illness daily, how it can effect even the smallest of daily tasks. I particularly like that this poem shows the appreciation of those around us who show support as they struggle to understand what is going on as we urge them not to give up on us.
I think a lot more to be gleaned from this poem depending on the individual as it highlights aspects anyone living with a chronic condition could relate to; whether physical or mental.
I'd like to thank Victoria for allowing me to share her personal feelings.
In this poem she expresses how it feels to live with this invisible illness daily, how it can effect even the smallest of daily tasks. I particularly like that this poem shows the appreciation of those around us who show support as they struggle to understand what is going on as we urge them not to give up on us.
I think a lot more to be gleaned from this poem depending on the individual as it highlights aspects anyone living with a chronic condition could relate to; whether physical or mental.
I'd like to thank Victoria for allowing me to share her personal feelings.
Sharing The Pain.
Oh my arms do ache as I write down this prose
Most days it feels like the pain goes all the way to my toes
Bring me back lazy days lying in the sun
Or the age when being flexible meant so much more fun
Living with aches and strains and all things stretchy
Remembering a day without pain seems so sketchy
From my head, to my ankles, hips and back in between
They say it would help if I could be more 'lean'
But extra movement above the essentials feels unfair
It even kills me each morning just to blow dry my hair
So please understand how hard it can be every day
When all I want to do is stay in my bed and lay
I know you may find it hard to understand
That even the slightest pain in the knuckles, the hand
Can be overbearing, and so unforgiving
But still have to work, still make a living
If only you knew how hard most days it becomes
Just to text and email, how much it strains ones thumbs
Childbirth may have been so much faster and slicker
But ageing of the pelvis and hips comes much quicker
My pelvic floor and backside have certainly seen better days
My moaning and groaning you must hope is a phase
Shoulders forever, feeling so strained
My legs constantly looking blue veined
Cramps in my arches, IBS in my tummy
Hereditary illness, blame my flexible mummy
Bunions will scream, Bulging discs take my power
It even pains me just to stand in the shower
Tired and sleepy I need to relax
Even those days that I rest to the max
So just bring me your patience, comfort, understanding
Even when you hear my joints creak more than the landing
You know it's me, 'crackling' just walking downstairs
The lack of sleep again bringing nightmares
Thank you for listening, for just being here
Not having you close to comfort is my biggest fear
I know I go on, my frustration and tears
Must be hard work for so many years
But knowing you're here to carry the weight of my head
Even on the days it feels heavier than lead
Gives me the strength to be strong, keep me moving
Your love and support it just keeps on proving
Thank you again for holding my hand and weak wrist
Even though my pain must never seem to cease to persist
Most days it feels like the pain goes all the way to my toes
Bring me back lazy days lying in the sun
Or the age when being flexible meant so much more fun
Living with aches and strains and all things stretchy
Remembering a day without pain seems so sketchy
From my head, to my ankles, hips and back in between
They say it would help if I could be more 'lean'
But extra movement above the essentials feels unfair
It even kills me each morning just to blow dry my hair
So please understand how hard it can be every day
When all I want to do is stay in my bed and lay
I know you may find it hard to understand
That even the slightest pain in the knuckles, the hand
Can be overbearing, and so unforgiving
But still have to work, still make a living
If only you knew how hard most days it becomes
Just to text and email, how much it strains ones thumbs
Childbirth may have been so much faster and slicker
But ageing of the pelvis and hips comes much quicker
My pelvic floor and backside have certainly seen better days
My moaning and groaning you must hope is a phase
Shoulders forever, feeling so strained
My legs constantly looking blue veined
Cramps in my arches, IBS in my tummy
Hereditary illness, blame my flexible mummy
Bunions will scream, Bulging discs take my power
It even pains me just to stand in the shower
Tired and sleepy I need to relax
Even those days that I rest to the max
So just bring me your patience, comfort, understanding
Even when you hear my joints creak more than the landing
You know it's me, 'crackling' just walking downstairs
The lack of sleep again bringing nightmares
Thank you for listening, for just being here
Not having you close to comfort is my biggest fear
I know I go on, my frustration and tears
Must be hard work for so many years
But knowing you're here to carry the weight of my head
Even on the days it feels heavier than lead
Gives me the strength to be strong, keep me moving
Your love and support it just keeps on proving
Thank you again for holding my hand and weak wrist
Even though my pain must never seem to cease to persist
I don't write lots of poems but find they flow more easily when it's about things important to me. For example my children's husband and some friends birthdays, valentines day, awful commutes, that sort of thing, when I'm in the mood, will blast a few lines.
Having not long being officially diagnosed with JHS I joined some of these FB pages and felt it a real support with so many people out there that understood, I thought I'd put something together that might help others feel it's not just them (and always helps to get the moans off your chest!)
I suppose [this is] directed at anyone, partly my family and friends; [and centres around] JHS conditions; including, bulging discs, IBS, bunions, restless leg syndrome and a load more odds and sods that are no fun putting out there on the web!
I've already started the next one; as I say it comes easy when it's on your mind all the time!
- Victoria Payne