MARIE'S VOICE... #1000speak

Once upon a time (1970 to be exact) in a children's home in England, run by an order of nuns called 'The Poor Sisters Of Nazareth'... there lived a very 'special' little girl.

She was a tiny little dot, who had short cropped hair, and the bluest of blue eyes.

Her beauty (often overlooked) was breathtaking!

Like all children, the child had needs; the need to be kept fed and safe if she were to survive, and the need of attention, love, and compassion if she were to thrive, but (as mentioned before) she was a 'special' little girl, and as such her needs far outweighed those of the other children who lived at the orphanage.

At five years old (such as she was) she was unable to feed herself, she couldn't walk, she couldn't talk, her understanding of the world around her was extremely limited... and her behaviour would have tried the patience of a saint (or nun, as the case may be!).

The child had 'special' needs. She needed 'special' care.

And so it was, that the Nuns (in order to best manage their 'special' little charge), had devised an extraordinary care plan.

The child was fed on 'special' food - wickedly small portions of Librium laced cereal!

She was given a 'special' bed... a cot cage on the nursery floor, away from children her own age, which was tied to the wall with rope... to keep her safe contained!

And, she was given her own 'special' play room prison - The pram storage room, which contained, well, prams!

There were no toys in the pram room for the little girl to play with, no cushions for her to snuggle into when she napped fell into an exhausted (scream worn) sleep - no padding to protect her when out of fear, abandonment, desperation, she smashed her head against the floor... over and over again!

There were no hearers of responders to her screams, no wipes for her tear stained (often blood stained) cheeks, no cuddles for calm.... no attention - no love - no compassion.

If she wasn't trapped in a cot or squeezed into a high chair, she was allowed to forced to use her 'special' room (unattended) for most of the day.

Her only companion - the frightened little girl in the mirror!

The little girls name was Marie; she was born profoundly disabled, with severe learning disability, cerebral Palsy, mobility problems and epilepsy.

She was placed into Nazareth house children's home when she was six weeks old.

***

In my minds eye

The room is just as I imagined it to be; empty, aside from a row of old fashioned prams and a long mirror on the wall. The main door to the room is closed. The doors to the veranda are locked.

The child is sat with her back to me in front of the mirror; head down, torso slumped, and she is crying... body-wracking-sobs.

Another lonely day; voiceless, trapped, afraid. Hopelessness surrounds her.

She lifts her head, and (through the rain) looks despairingly at her mirrored self; the expression in the eyes reflected back at her is one of pleading... the child is in such pain.

There are no words for the emotion that almost explodes from my heart. It hurts to look, and just for a moment, I turn away.

I want to reach out and touch her; lift her onto my lap, cuddle her calm and tell her I love her.

I want to take wipes from my bag; wipe the blood from her forehead and the tears from her cheeks.

I want to hold her to me, stroke her hair, kiss her perfect little face and tickle her into giggles.

I sit down next to her, and imagining that she can see/hear me as I can her, I say, "It's okay darling... everything's gonna be okay... compassion is on her way.

She'll be here soon - she'll be your voice, and one day (though she doesn't yet know it herself) she'll be your mum.

She will fight for you, care for you, love you... and she'll be with you always."

Just before I opened my eyes (and headed back to my laptop) the child shuffled forward, and (still gulping down sobs) she reached out toward the mirror, lifted her gaze above and to the right of her reflection, and smiled... I smiled back.

***

MARIE'S VOICE

Michelle Daly was just under 17 years old when, after taking on the role of housemother at Nazareth house children's home in Bristol, England, she first met Marie. Marie had just turned 5.

On that first meeting Marie was in a cot on the nursery floor which was tied to a pipe with rope. She was incredibly thin, of pale complexion, and had a large lump on her forehead. Michelle was told that the child screamed for hours on end and bashed her head on the floor or against the side of her cot.

"I looked at the child's pale face; her eyes were like glass. I thought how strange it was that we stood so close and she didn't reach out to be picked up, as though she was used to being looked at, but not touched" ~ Michelle Daly

The following day Michelle was horrified to learn that not only was Marie dosed up on Librium three times a day (to keep her calm) but also that she was locked in a storage room (and left there alone) for hours on end each day (to keep her out of the way). Staff couldn't possibly be expected to watch over such a challenging child and get the floors shining (priorities! o_O), and the nuns couldn't abide the way Marie (who was unable to walk) dragged her feet over their beautiful polished floors.

Marie was placed on the floor in the pram store room, the door was closed on her and she was left there alone for hours.

Her screams could be heard all over the house, until she either exhausted herself or knocked herself unconscious! She was bought out at meal times and fed a small potion of Librium laced cereal, then returned to the pram room or put in her cot.

Michelle couldn't bear it; she soon found ways to sneak Marie out of the store room and very quickly formed a strong bond with 'her little friend'.

"Come on!" I said, picking her up, "You'll get me shot!" I ran down the stairs with her. She laughed; glad to be rescued. I sat her on the table in the empty Laundry basket while I emptied the drier. For a bit of fun I put the hot nappies over her and she laughed again; she loved to get the attention. I turned my back on her to fill the washing machine, and when I looked around again she was fast asleep; her little face still wet from crying." ~ Michelle Daly

Toward the end of 1970 Nazareth house was condemned and the home office closed it down. Marie was given a bed in a hospital in Taunton for the mentally handicapped; 17 year old Michelle followed her, taking a job in the same hospital and visiting her little friend whenever she could.

"Working in the hospital was like stepping into another world; a world where human beings with over-whelming qualities were classed as sub-normal" ~ Michelle Daly

.

Within a few months Michelle knew she couldn't continue working at the hospital. She also knew she couldn't leave Marie behind. She was getting out, and she was getting Marie out too! 

To cut a very long story, a lot of opposition, and much heartache short; Michelle traced Marie's birth mother who agreed to sign over legal guardianship papers, and (eventually) Michelle was able to take Marie home. 

Michelle was just 19 years old when she took Marie (who was eight by this time) home. Nineteen! A bit of a lass, with her whole life ahead of her, and she chose to take Marie along for the ride. 

It's been one hell of a ride hasn't it 'M'?!  (At this point Michelle is nodding :O)) 

Ask me to define compassion... and I'll answer 'Michelle'. 

***

Marie is 50 years old now, a year older than me. I'll avoid a virtual slap by leaving you, Dear reader, to work Michelle's age out for yourself.

Marie has not always found life easy... but she has lived! 

She is still profoundly disabled, but there are things she can do; is encouraged to do. She especially loves playing with her building blocks and colouring books. 

She still needs full time care, and she still struggles (terribly so) on the rare occasions that she has to go in to respite. These occasions aside; she is happy. 

She still has extremely limited speech and understanding, but she understands love... and my word is she loved! 

***

Thank you for allowing me to share

God bless you, and all those you love

Kimmie X

***

If you'd like to read more about Michelle and Marie's life together you can find her book here
Follow her blog here >>  http://michelledaly.blogspot.co.uk/
And find her on Twitter here >>  @michelledalyliv

***

1000 Voices for Compassion is such a beautiful movement.... there have been so many fabulous contributions (from all over the world). I would encourage you to check them out if you get a chance.

You can do that by following @1000speak #1000speak on Twitter, or by checking out the FaceBook page here

Tweet

Mental Illness #Quote

"People assume you aren’t sick 

unless they see the sickness on your skin

like scars forming a map of all the ways you’re hurting.

My heart is a prison of have you tried?s

Have you tried exercising? Have you tried eating better

Have you tried not being sad, not being sick?

Have you tried being more like me?

 Have you tried shutting up?

Yes, I have tried. Yes, I am still trying, 

and yes, I am still sick.

Sometimes monsters are invisible, and 

sometimes demons attack you from the inside. 

Just because you cannot see the claws and the teeth 

does not mean they aren’t ripping through me. 

Pain does not need to be seen to be felt.

Telling me there is no problem 

won’t solve the problem.

This is not how miracles are born. 

This is not how sickness works.” 

credit ― Emm Roy, The First Step 

FLAWED #Poem

Thank you for allowing me to share

God bless you, and all those you love

Kimmie x

Is 'This Tired' .... #Fibromyalgia ?

Forgive me, dear readers of my rambles, for I have sinned been too knackered, discombobulated, spoonless to write, it's been days since I last knocked out anything worth sharing, and will likely be days before I reach the end of this ramble.

I would like to get this one over to you though, especially to those of you who suffer ME, and/or Fibromyalgia.

A few months ago, I had a severe pain/mobility episode, during which my back/hips went out of alignment and I was left virtually unable to walk for a period of around three weeks, it's not the first time this has happened, and as (over the past 18 months or so) I have experienced ongoing (though less severe) pain in other areas, and a variety of other (random) symptoms, my GP made a referral for me to see a rheumatologist. 

Anyway, to cut a long consultation short, the rheumatologist, diagnosed wear and tear, probable disc prolapse, and sciatica, he then told me that.... I'm developing Fibromyalgia. 

At first, given the (long list) of random symptoms I've been experiencing, and the little I'd heard about Fibromyalgia, his opinion seemed to make sense. However, since then (as you do if you're given a new diagnosis) I've googled untold amounts of Fibro information, and as a result of my google fest there are a few things that are concerning me. 

Firstly, Almost every article I came across states (in one phrase or another) that - Symptoms of Fibromyalgia mimic those of various other conditions (including, worryingly, Multiple Sclerosis) and as there is no specific test for Fibro, diagnosis should only be reached after first testing for/and ruling out other conditions. 

Many of the articles I read also state, that Fibro symptoms are very similar to those of ME (Myalgic Encephalomyelitis ), except that (in most cases) pain is the predominant problem in people with Fibro, whereas fatigue is the major complaint in people with ME. 

I'm a little (a lot) concerned that the rheumatologist would throw fibro at me (on first consultation) without first testing to rule out other possible conditions, especially as (though I do experience wide spread pain, to varying degrees) fatigue is most definitely my major issue! 

It's worth mentioning that the doctor did perform the 'Tendor Points' test, and that I felt 'no pain' in any of the areas he pressed - although his fingers might well have been butterfly wings, so gentle was his touch. 

On that note, dear reader, (especially those of you who are in the knackerbobulated club) - do you, in your *I'm living it so I should know* opinion - think that.... 

a) my symptoms (to follow*) fit the Fibro diagnosis the rheumatologist has thrown at me?  

b) Should I ask him to run tests to exclude other conditions, and if so, is he obliged to do so? 

And now (as promised*) bet you can't wait!

THE FATIGUE

Actually, fatigue doesn't cover *This Tired*, I'm not sure there is any stand alone word that does! o_O 

Having suffered mental illness for years (including, depression, OCD, anxiety, and an Eating disorder) I'm no stranger to fatigue, but *This Tired*, Oh my, this tired is like nothing I have ever experienced before! 

No amount of sleep eases 'This Tired', it is extreme, overwhelming, relentless....it knocks me off of my feet, muddles my brain, limits my ability to 'do', and forces me to rest after even the shortest periods of 'doing'. 

'This Tired' has been getting progressively worse for around 18 months, and has been a constant for the past 6 (or so) - and when I say constant, I mean constant, every second, of every minute, of every day! 

I drag myself up in the mornings feeling like I've been hit by a dumper truck (even if I've slept all night) and spend the rest of the day (when I'm not napping) doing very little - and 'very little' is mindblowingly exhausting! 

I could go on with the fatigue issue (I have more words!) but I'd rather you didn't hit the 'bugger this I'm off button' (assuming you haven't already) so I'll move on. 

The Pain:Well, (as I said earlier) fatigue is by far my major complaint, but I am definitely ouchy..all over (though not usually 'all over' at once) to varying degrees every day.

Back, hip, face, tummy, neck - Head, shoulders, knees and toes (knees and toes) and eyes, and ears, and mou....   

Sorry, couldn't resist - I don't actually (to date) have a painful mouth and nose ;o)

The Randoms: There's a list o_O

Pickaxe to the head: I'm not kidding, well actually, I am.... but MY GOD, if anyone should ever take a pickaxe to my head, I reckon I'd know what'd hit me!  

This can happen at anytime, sometimes more than once a day, it stops me in my tracks, and is (thank God it doesn't last long each time - seconds usually) excruciating!

Knife through the shoulder blade: Clearly, I'm dramatizing again, I've never (literally) been stabbed in the back, but, there really is no other way to describe it. Knife pain lasts a lot longer than pickaxe pain, and transmits a heavy-achy feeling down my arm and into my hand, causing partial numbness in the process. 

Alternative shoulder pain: This one is bothersome (because it disturbs sleep) it's painful, intensely so at times (though more heavy/achy/bruised than stabbing) and occurs under pressure....by pressure I mean laying on it/leaning on it.

Chest Pain: I sometimes get a sharp, severe, stabbing pain in my chest just above my left breast, which often radiates through to my neck and/or shoulder, it hurts more when I breath in, and when point of pain is touched (on instinct) it's exacerbated. This one frightens the life out of me (exacerbated by OCD thoughts) - *is it my lungs? is it lung cancer? Am I having a heart attack?* .. You get the picture. 

Facial/head numbness: This one's weird, and can hit at anytime (though not every day) - not only do I experience numbness in my face and/or head, but it's accompanied (or followed) by a strange internal trickling sensation, almost like cold running water, underneath the skin. It's extremely disconcerting. 

Bone Pain (deep): (periodic) Specifically knees/hips - when I say deep I'm attempting to describe (in short) an excruciating pain that would be better described as 'cork screwing' or 'boring' the bone - It hurts..a lot! o_O 

Pick & choose hands; I told you my symptoms were random! What I mean by this is - my hands (more often than not the right hand) can be working perfectly well one minute, and be practically useless (powerless) the next. 

Generally there is very little pain involved, but it is incredibly frustrating when I attempt to pick something up and 'hand says no'. 

Muddling words (forgetting words) OFTEN!: I've always been an outstanding read-out-louder (blows own trumpet) but really, I have; in fact at school (more often than not) I would be the 'chosen one' if any reading out loud was going on. 

Now however, I'm noticing more and more; whilst reading to my daughter, that I'm either muddling the beginning/end of words, stuttering, reading words the wrong way round, or (most worryingly) reading words that are not even on the page. 

It's almost as if my brain and mouth are in no way connected. To give a for instance - I just read this paragraph aloud, and read the word 'words' as 'swords' o_O

Similarly, I'm Having trouble writing/typing words correctly - specifically, I'm writing letters in the wrong order, or missing words out of sentences altogether.  

Even tweets require an edit before posting these days - and Iv'e lost count of the mistakes I've had to correct while writing this post (FYI - I just wrote dyas in the line above, as apposed to days, and corrected) o_O

These issues, coupled with my referring to the kettle (to give just one for instance) as "Oh, (tut) you know, the black thingy that boils water" is enough to drive me (and the rest of the family) insane! 

Makes no sense - Literally! 

Dizzyness/feeling faint: Especially when fatigue is at it's worst.  

Lead Legs: Heavy, achy (sometimes numb-ish) legs; that have to be willed on when walking, and often make me feel nauseous when resting - it's not a nice feeling, nor is it one I can easily describe..except perhaps to say that - when it occurs, I can feel my legs, (including pain) but they're not quite with it, or with me....Does that make sense? - Well anyway, if there is such a thing as 'lead legs', I have them. 

Itchy/painful ears: Oh how I hate this one. During the day my ears are more itchy than ouchy, but at night the pain is frequently unbearable. 

For months now my ears have objected to being caught between my head and the pillow, and will often wake me up (screamingly) to let me know how pissed off they are. 

Once they've woken me, they refuse to allow me to lift my head without first sliding my hand between them and the pillow, and keeping said hand firmly over the offending a***hole ear hole until I've (carefully, because it really bloody hurts) lifted myself up into a sitting position. 

Drunk walking (minus the drinking): Probably explains itself this one.. but in short - I (often, not always) find I can't walk in a straight line. I've lost count of the amount of times I'm walking down the street beside hubs one minute, and under his feet the next. The annoying thing is, I can feel myself suddenly veer off to the left, but there's bugger all I can do about it. (Sorry hubs x) 

Finally, and briefly (cause it's taken me days to knock this lot out, and 'This Tired' is killing me!) 

Palpitations: Eye twitches: numb hands/feet/toes: Dreams (more than usual): Sleep issues: can't sleep, or, can do nothing but sleep - no sleep is enough sleep - there is no relief from 'This Tired'!

So my friends, (those of you who would know) what do you think, is rheumy right to assume Fibro without testing?  

Is he (In your experience) seeing something in the above that leads him to believe further investigation unnecessary? 

Am I right to think (because google told me so) that what I'm describing sounds more ME than FS, or (as Google suggests) something else entirely?

Blimey, I've just read that lot back and I'm doing my own head in.... If you didn't hit the 'bugger this I'm off button', I salute you! 

Thank you for allowing me to share 

God bless you and all those you love 

Kimmie X 

Copyright©2015kimmie All Rights Reserved 

Update: Since writing this post (after various tests, including an MRI, to rule out other possibilities; and a second opinion...because I still wasn't convinced o_O) I have been given a definite diagnosed of Fibromyalgia. 

Thank you all, who offered support/advice in the process.