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Hello lovely Spoonies
My name is Alison and I have been chronically ill for 2years and 7months. I literally went from being the most-to-least active person I know. It began with a three week fever, undulating temperature, seizures and a myriad of weird symptoms a after course of antivirals prescribed for tiny blisters in my mouth, nose and eyes that occurred and persisted following hospital surgery to remove an infected root canal that has caused my face to swell so severely my cheek forced my left eye to close.
Whilst battling with healthcare professions in the UK my health remains very much in decline. I cannot even classed as an ‘ invisible illness insomuch as I have subcutaneous fat loss more consistent with that of an Aids patient. There are issues with my heart, low blood pressure, elasticity in my skin, veins, venous pooling and a myriad of other symptoms and dysfunctions that I didn’t have pre the viral infection. These render me mostly bedbound and I can’t listen to music anymore I have noise and light sensitivities and when my functionality is at a minimum, I console myself with the rhyming beat and create poetry. This helps me to translate my frustration of incarceration, illness and injustice to the outside word.:red: Please bare with: I cannot upload any attachments……it won’t let me and I have the technical dexterity of a lima bean so I may have to submit them manually copy and paste. S-O–R-R-Y :-/
Kindly regards
allyb (Alison)I wrote this in the early days when I was struggling to make sense my new reality; difficulty standing and sitting upright and the appalling response of the medical profession.
Someone asked which symptom I hated the most………..Maybe you’ve hit a raw nerve or caught me on a bad night; on reflection, I hate most of the symptoms in equal measure
I hate the burning sensation that I get in my head,
Mitochondria malfunction; I’m stuck in my bed.
I hate staying home when I need things from town,
My heart rate goes up and blood pressure down.
I have difficulty travelling; I can’t sit for long,
My muscles are weak when they used to be strong.
I hate being sedentary, so inactive and slow,
When I used to have energy; always on-the-go.
I endure twitching muscles and migratory pain,
I hate my blood pooling, the effects on my brain.
I lose clarity of thought and it slows my cognition,
Causing muddled up sentences and word repetition.
I hate all this resting and having to ‘pace’
I’m just as fatigued and I can’t win a race.
I still have my humour; though it’s just not as fast
And I hate my ‘quick wit’ is a thing of the past.
This list is not exhaustive of the things that I hate
But now I’m exhausted; a familiar trait.Part two: There are the secondary symptoms that I hate just as much
The symptoms are real but the medics don’t look,
“It’s all in my head” and it’s not in their book.
I can have CBT for “false illness beliefs”
My self-respect robbed by the dignity thieves.
The pain of my loved ones; from the havoc it wreaks,
The way we are silenced and made to look freaks.
We have no famous patron, to champion our plight,
Every day is a battle; we must keep up the fight.If I had to choose one; as my list is not small,
I hate the injustice we face most of all.I wrote this as the first year milestone/tombstone approached…..
I was catapulted from health into a chronic illness reality of endemic medical misgiving, sickness scientism and suspicion. It dawned on me that this world of illness incredulity was to be my new home.
I watched those I loved being sucked into this cyclone of spinning uncertainty where there was no sanctuary. As the structure that I had always provided was obliterated, they drifted; carried by the tides of uncertainly, coaxed by the glow of a medical beacon, to be battered by the rocks. This constant ebb and flow of survival and demise brought anger, sorrow, absence, denial and tides of guilt.(They have never seen this)
XxXxXxXxXxXxXxXxXxXx
This anniversary evokes in me, memories of what used to be……
The magnitude of all we’ve lost, of all we’ve gained, what it has cost.
Hidden from the world, our untold sorrow, flattened dreams of each tomorrow
An unjust tragedy of modern day, unrivalled by any Shakespearian play.
There is no going back, no time reversal, we’re not on the stage and it’s not rehearsal
Guilt burdens your mind but it has no place, in the ‘here and now,’ you’re my saving grace
In the desperate night hours of restless regret, please know this and never forget….
It’s all that you are; all you do, the love that you show me that pulls me through
Amidst rubble left behind by this hurricane; my last soldiers standing,… you remain.
As the monotony of the incarceration got to me I felt like a faceless number to the medical profession, they wanted a timeline of my illness yet nothing I wrote seemed to resonate. When I spoke I missed words; nothing flowed and I came over as a half-wit in the little time you get….if I wrote it…it just wasn’t read. So I needed a novel way to pull them up short …so when Doctors asked for my history I just used to hand them this………..
How many hours in 24?
How many hours in 24?
I’m rushing, I m dashing, I wish there were more!
I have work; I have leisure and pleasures galore.
So much to squeeze into this life I adore.Birthday celebrations are a family affair,
A nightmare to organize; to get everyone there.
How many hours in 24?
So little time, so much in store.All of a sudden life grinds to a halt!
My whole body damaged by a viral assault.
How many hours in 24?
My life has been taken, I’m sick to the core.In my room I’m entombed, the air it hangs stale,
Immobile, imprisoned; stuck here in jail.
How many hours in 24?
Minutes become hours; it’s not like before.My curtains are closed when I can’t bare the light,
Nothing to look at, no view in sight.
How many hours in 24?
When your view is the ceiling, the walls and the floor.Others are busy with lives of their own,
Hour upon hour, I spend all alone.
How many hours in 24?
As life carries on but outside my door.Infinite nights, haunted with pain,
A daunting reality visits my brain.
How many hours in 24?
When you cannot shut out the perpetual snore.Each day is a battle, a fight to stay well,
Not enough soldiers, it’s as scary as hell.
How many hours in 24?
I fear time’s running out and I’m losing the war…..This next one was written on the second anniversary of my illness. (Which ironically is valentines day) It was to show my gratitude for all the hard work Dr Diana does on our behalf. As it might have been a teary day; it gave me a distraction.
Dr Diana
You are the brightest star; by far……..
in the medical galaxy of our ‘prettyill’ reality,
you bring hope and optimism for our compromised vitality.
With a tenacity like ‘Tigger’ when it comes to research rigor,
You’re a detective, so effective, on the trail of our lost vigour.
Your passion and compassion clearly shows ‘you have been there!’
It’s not driven by an ego; no……….. it is driven by your care.
Sincere and spoonelicious; you really comprehend
I feel I’m ‘prettyhonored’ you considered me your friend.
The ocean may be big but I know just where you are,
In the darkness of our night, you’re the brightest star; by far.
Last year my middle son was 21yrs my daughter 18yrs and I turned 50yrs within 3months of each other. Pre my illness; circumstances had dictated we had not been on vacation for two years So we had planned to go for a long weekend in Venice, my daughter and I (a promise since she was small) Then a family holiday in the USA where I was to attend a Candace Pert Lecture (My hero)then meet up with my family. When I became sick all these plans were abandoned as I was unable to even go out to a restaurant. This was what I wrote………
September 25th 2012 (50!…. but not as planned)
No flight overseas, no catching a plane,
No new adventure on unknown terrain.
No weekend in Venice my daughter and me
No pavement cafes and steaming hot tea.No trip to the coast, footprints in the sand,
No spray on my face from waves blown inland.
No inhaling the smell of a salty sea breeze,
No Fish n’ chips in paper; warming my knees.No strolling through fields and drinking the view
No squelching socks, wet from the dew.
No sharing with people perchance on the day,
No enriching encounter, then back on my way.No cosy restaurant, friends and fine wine,
No high heels and elegance; dressed up to dine.
No night at the ballet and home on the train,
No celebratory drink, no glass of champagne.No walking by torch light just my dogs and I,
No magical canopy; a star studded sky.
No driving my car; no freedom that brings,
No independence to do so many things.No spontaneous decisions, a hallmark of mine,
No doing things different; not towing-the-line
No…. I never imagined such crippling limitations,
No fireworks at 50 and life celebrations.I live in the countryside near the Yorkshire Dales (home of the Bronte sisters; Wuthering Heights)and for relaxation I would walk miles with my two dogs. Christmas 2010, two months before my illness, my eldest son had a pair of walking boots made for me. They are handmade local to us but I would never have indulged myself in such luxury and extravagance. I was delighted with them; I felt sooo spoilt. I was in the last few weeks of a dissertation as I was completing a Masters degree for my work. My boots awaited the completion as we had proverbial ‘mountains’ to climb. They needed wearing-in, I’d only worn them for a couple of shorter walks…………
In spring this year my son saw the boots whilst looking for something and asked what size they were. He then asked if he could give them to his girlfriend 🙄 My heart sank to my bootless feet….what could I say….it made sense rather than them gather dust and perish but I felt bereft and parting with them was difficult so I wrote an ole to my boots….
Ode to my boots
My boots are gone; the hours drag on.
My boots they meant so much.
Those boots and me, we planned to see…
and amble and wander and such.
My boots were leather n’ light as a feather,
My boots were stitched for me.
Lovingly made and not for parade,
To ramble and stroll and be free.
My boots were brown, not heels for downtown
My boots though tough were nimble.
I thought I would tread, a sure path ahead
‘The future’, my boots were a symbol.
Oh my Goodness!! Allyb I’m in tears. What a powerful and poignant story is told through your poetry. Don’t ever stop writing. You are ONE TALENTED LADY!!
And I’m sorry about the boots. Breaks my heart 🙁 Sending you a Huge Hug right now.Wow! how wonderfully you express the depths of despair we go through, yet the hope we all cling onto. I love the idea of giving the poem to your doc, lol!! Can you imagine their face if you gave them a “fully-comprehensive” poem of the condition, it would be called a book!
I sooo get the boots one. I’ll let you into a little secret, I bought a pair of beautiful white leather high heeled shoes, way back in 2005 (3 years after my accident – there was no chance I could stand up in them, let alone walk in them!) I told my girls they were my wedding shoes. They looked at me as if I was crazy and said “but mum you haven’t even got a boyfriend!”. “I know” I said “but one day I’ll get better and I will wear these at my wedding”.
I enjoyed reading every one of these eloquent, heart-felt poems, indeed I read them out aloud, stunning work.
Barbara
(UK)Barbara sometimes we need something solid/tangible to anchor our dreams in reality. I so nearly didn’t add the Boots poem as I thought it was just me being silly. Thank you for you kind words and sharing your story.
In-fact I really very nearly didn’t enter any of them but I had a gentle push from a certain Doctor. I will let you into a secret…. I also wrote the poem for Sever ME Day (below) that you may have read on the Facebook page. I don’t mind anyone on here knowing I use an alias FB.
I wake up from a nightmare, to find reality is worse.
I am riddled with this illness, like some medieval curse.
Yet I’m certain it was yesterday that I was full of vigour?
And my mind slips into overdrive, this mystery to figure.
The truth as a companion sings a deathly serenade,
Again, I find I’m all alone in darkness and afraid.
If only I was free to rise and I could just take fight,
But I’m fastened to this illness like I’m shackled to the night.
The irony; if I could run, is that I would be well
I would not have the need to flee and break the chains of hell.
Thank you sooo much Charlie1
I have only really written two complete poems this year. There are bits and bats of others that I suppose I should go back to and finish. There is one that I wrote to help pull me thought the bleakest point that I may now find the courage to share later.My next project comes because……
It was my Birthday on Wednesday. (51) I avoid hospitals like the plague but I had an allergic reaction and a Dr persuaded me I needed to be in for observation. What followed was a nightmare beyond belief beginning with two female ambulance drivers who were unwilling to acknowledge my condition. In short I was left in accident and emergency with an incontinence pad over my head next to a loud TV where my wallet was stolen. I need to write about this (if not in verse) because this was not the worst of it; it was barbaric there is much more too it and it needs to be told.What??!!! I’m so sorry you had to endure such a thing. Everyone with this illness has terrible stories regarding their visits to the hospital, including me. It’s seems though that yours was an especially horrible experience. 🙁
I do understand how journaling your experience and feelings opposite such a trauma can help with the healing process. I hope you will rest up though before starting your project.
Feel better soon. Big Hugs…
Beautiful!
Sorry now I am switching to Microbiologist mode: you mentioned undulating fevers. Have they looked for the cause being a bacterium called Brucella it is the causative organism of brucellosis. It is a hard organism to treat, but it takes a person’s life away. Some people go insane because it gets so bad. It is difficult to treat BUT IT IS TREATABLE. The organism hides in macrophages away from your bodies immune system and replicates. When it burst out of the the cells it causes a fever. Then they move on to more cells and the fever disappears until the cells rupture. An infectious disease doctor can diagnose you by looking for antibodies to Brucella. Then you can start the appropriate treatment to get you life back.
Shonda
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