"Symptoms of Mental Illness are (usually) very well hidden. Behind award winning smiles... 'I'm fine.' - 'I'm okay.' " ~ Kimmie
***
Thank you for allowing me to share
God bless you and all those you love
Kimmie x
Related Posts
Showing posts with label invisible illness. Show all posts
Showing posts with label invisible illness. Show all posts
Tuesday, 26 January 2016
Tuesday, 10 November 2015
STILL afraid... and the Line's STILL fine!
I originally wrote the following piece in 2013... I'm sharing it again today, edited only marginally, because almost 3 years on there is STILL no change for the better... Government are STILL ignoring campaigners... Disabled people (those who have survived the sustained attacks) are STILL afraid!
***
Writing about my life with mental illness really helps me, it’s cathartic to write my thoughts down.
I made the decision to share my muddled mind through this blog because I felt that sharing my experiences might help other sufferers (and me) feel less isolated.
I hope that by my ‘telling it how it is’ someone somewhere will find some relief in reading.
Having said that I do worry (a lot!) that being too honest about some of my mental health symptoms may do more harm than good and it’s for that reason I’m going to suggest that if you're feeling particularly vulnerable at the moment you don’t read any further into this post...
In recent years I’ve had various conversations with friends (some via social media, some face to face) who report an increase in self-harm, and/or suicidal-thoughts... and I've lost count of how many articles of same/similar I've read on line.
One lady (heartbreakingly) confided that she is mentally making plans to re-home her pets because she feels suicidal and is concerned that she might act on these feelings, leaving her pets uncared for.
Many of the people I've spoken to have complex mental health issues (some have physical disabilities too), and they have told me that their increase (or onset) of self-harming behaviours/thoughts, and/or suicidal thoughts are directly related to fear of Government, DWP, and current or anticipated WCA (Work capability assessment).
Of course, I know from personal experience that paranoid fear, irrational thoughts and an inability to cope with change often go hand in hand with mental illness, however, given the relentless cuts to disability welfare and services, the Government/media propaganda, and the treatment that so many have endured at DWP assessments interrogations, it’s hardly surprising that so many sick/disabled people feel incredibly anxious at the moment.
People are desperately afraid, overwhelmed with fear. Many are deeply affected by right wing ‘scrounger’ propaganda and incredibly worried about their future.
They’re terrified by even the idea of having to expose themselves (face to face) at a ten minute (tick box) assessment (to a complete stranger) who is unlikely to be qualified to assess mental illness and even less likely to empathise. They are also despairingly aware that even if they are lucky enough to qualify for benefit it won't be long before the process begins again!
Many are self-harming, some feel suicide may be a better option than continuing to battle both debilitating illness and the ‘powers that be’.
Some are far sicker now under a system that (in many cases) claims they are fit for work than they were under the previous system which recognised that they were NOT and supported them accordingly.
Am I afraid? (May 2013) Yes I’m afraid, very afraid!
(Nov 2015)... Still afraid...and the line's still fine.
Has my own tendency to self-harm increased as a direct result of the coalition’s attitude towards disabled people?
Yes! Though I’m ashamed to admit it, it has.
Do I want to continue living with this daily, nightly, debilitating fear?
NO! Oh God no!
I can’t see an end to it, the future is scary, and my own symptoms of mental (and physical) illness have been greatly exacerbated.
Do I ever wonder if my husband, family, (The State) would do better without the-burden-of-me?
Sometimes.
Do I feel suicidal? - Do I wish I were dead?
Those of you who know me either through contact or through my writing will already know the answer to this question! You’ll know that I am and always have been terrified of death. You will have read here >> Scared to shut my eyes! about my overwhelming fear of death as a child, you’ll know how terrifying my intrusive thoughts are and how often they relate to death.
NO - I don’t feel suicidal, I have NEVER felt suicidal no matter how much life, other people (or my own mind) has thrown at me. No, I don't wish I were dead.
I don’t wish I were dead now, and I didn’t in 1986 when life, other people (and my own chaotic mind) caused me to suffer a complete mental breakdown and I attempted to take my own life...
I don’t remember how I got to my bedroom that evening with a full bottle of ‘paracetamol’ and a pint glass of water. I don’t remember planning or contemplating suicide or for one single moment wishing I was dead.
I don’t remember thinking about my 8 month old baby or wondering how he would cope without me.
I don’t remember feeling suicidal, I don’t remember wanting to die.
I DO vaguely remember taking the pills.
There was no lining up of tablets like you see on TV, no thoughts, no fear, no emotion, no tears... there was *nothingness*.
I tipped the pills from bottle to mouth (how I swallowed so many at once is beyond me) and washed each mouthful down with water until there were no more pills to take.
There are some blurry (vague) memories after that, my first husband slapping me very hard (this confused me) – baby crying - arriving at hospital in an ambulance – a black tarry substance - gagging on a tube - a drip – a white ceiling through a strange tunnel vision, then blank again. Days of nothing, no thoughts, no emotion... *nothingness*!
I have never ‘contemplated’ suicide, BUT in ‘1986’ (20 years old, without so much as a passing thought for the first of my five children) I very nearly succeeded in taking my own life!
***
I had a point when I started writing today and I’m not sure if I’ve succeeded in making it, so briefly...
For many mentally ill (and indeed, physically ill) people there is a very fine line between incredible strength, and *can’t take anymore*.
I am deeply concerned that the UK Governments relentless cuts and cruel propaganda are pushing so many vulnerable people worryingly close to... *can’t take anymore*.
***
POSITIVE THOUGHT
I'm now almost 30 years on, I'm still here, I cannot stress enough how thankful I am for that!
How thankful I'll feel this evening when my fifth child (my baby) rolls in from school and throws her smiley-gorgeous-self into my arms.
How thankful I am to be here when my older-no-longer-at-home-kids turn up needing Mum.
How Thankful-thrilled-bubbly-excited I will be in 7ish months time when I hold my first Grandbaby.
Life is tough at the moment, it has been to varying degrees for as long as I can remember but I feel incredibly blessed to be here.
***
Thank you, as always, for allowing me to share
God bless you and all those you love
Kimmie x
Before you go, can I ask that you consider signing the *NEW* #WOWpetition... in support of the UK's chronically sick & disabled people.
You'll find more details about the WOW-campaign HERE
The petition (should you wish to sign it) is HERE
You can follow/support the WOW-campaign on twitter HERE
***
Sunday, 23 August 2015
Poem... That Cam-I-Am
That ‘Cam-I-am’
That ‘Cam-I-am’
I do not like that ‘Cam-I-am’
I do not like him here or there
I do not like him anywhere
I do not like him on my telly
smoke-screen grin... state funded belly
I do not like him in my head
invading dreams when I'm in bed
I do not like his policies
his attitude to those in need
I do not like his spare room charge
homes (he says), are far too large
while he and his, and them and theirs
homes (state funded), rooms to spare
looking down on me and mine
and you and yours, and yours and theirs!
You homeless poor man....?
'Cam' don’t care!
That ‘Cam-I-am'
That ‘Cam-I-am’
I do not like that ‘Cam-I-am
Not in my head, not here or there
I do not like him anywhere
I do not like his common(s) trough
piggy chums, (state funded) scoff
I do not like his welfare war
feed the rich, starve the poor
His food-bank-Britain... Eton mess
Cameron - Osborne - IDS
“Scrounger, skiver, feckless slob”
“sick, disabled? - GET A JOB!”
PIP PIP (pardon the pun), state funded wine
looking down on me and mine
and you and yours, and yours and theirs
You hungry poor man...?
'Cam' don’t care!
That ‘Cam-I-am’
That ‘Cam-I-am’
I do not like that 'Cam-I-am'.
Copyright©2015kimmie All Rights Reserved
Thank you for allowing me to share
God bless you, and all those you love
Kimmie x
***
Sunday, 16 August 2015
The WOWcampaign today launches a new e-petition!
The WOWcampaign today launches a new e-petition to remind the Government that they have failed to honour the parliamentary motion in support of the WOWpetition. You can sign WOWpetition here
Today the WOWcampaign launches a new petition on the Government ...
e-petition website, e-petition 1060681. It calls for the Government to “Assess full impact of all cuts to support & social care for disabled people”. The WOWcampaign have taken this action 18 months after the original “WOWpetition” was debated in the House of Commons because little has happened since, save for sick and disabled people being targeted by further cuts.
Continue reading here
Friday, 1 May 2015
Do I want to get rid of Cameron? - Hell Yes!
Remembering the Thatcher years, I was horrified when, in may 2010, David Cameron (enabled by Nick 'sorry-not-sorry' Clegg) slipped into power, along with the likes of George 'go-figure' Osborne, and Ian 'don't-give-a-damn' Smith.
Now, after five years of Cameron and co, the rich are richer and the poor are poorer, well, I expected that!
I knew the Tories wouldn't have any interest in, or feeling for, the 'common' people.... but (and this is a big BUT!) I never expected them to hurt people like me, or my daughter!
Why? - What might exclude us (and others like us) from Tory 'wickedness'?
Well, my child and I are both disabled - they wouldn't go after disabled people, would they?
****
Over the past five years the coalition (Tory) Governments draconian cuts, cruel assessments, and relentless propaganda have pushed (many) sick, disabled, and mentally ill people worryingly close to the edge - pushed some (largely unreported by the media) 'too far!'
My daughter and I didn't choose disability, she certainly didn't; she was born disabled. There's not a lot we can do to change our 'scrounger' status, either we take the 'handouts' (social security) from the same pot my husband paid into for years I might add, or we starve!
Of course, my 'Littlie' (going on 10, with a mental age of 5) has no idea that (Thanks to Tory/media rhetoric) our family would be judged negatively (by some) she has no idea that Cameron and Co have attempted to create a Britain that may not welcome the disabled adult she will one day become.
I know though! I know, and I am afraid, afraid for myself, afraid for my disabled friends, afraid for all (reliant) disabled people living in Britain.... but above all else, afraid for my child!
Many disabled people have had their lives turned upside down over the past five years - some have not survived the onslaught.
Vulnerable people, who (and I should know) are desperately afraid - deeply affected by right wing 'scrounger' propaganda, and increasingly concerned about their future.
People who's symptoms of illness/disability (in many cases, including my own) have been greatly exacerbated by an overwhelming fear of the next WCA (Work capability Assessment)
Anassessment interrogation that often ignores their own doctors opinion in a deliberate attempt to strip them of benefits.
Mentally ill people who are terrified by even the idea of having to expose themselves (face to face) at a ten minute (tick box) assessment (to a complete stranger) who is unlikely to be qualified to assess Mental Illness, and even less likely to empathise.
People who are despairingly aware, that even if they are lucky enough to pass the assessment, it won't be long before the process begins again.
Many are self-harming, some feel/or have felt that suicide may be a better option than continuing to battle both debilitating mental illness/disability, and the 'powers that be'.
As most of you know (physical disabilities aside) my own symptoms of Mental Illness interfere with my ability to cope with many everyday activities without the support of my husband, and those things I do manage alone, are only doable if he's nearby.
I could give for instances but we'd be here all day; so I won't.
Most significantly, for the purpose of this post, is that my disabilities prevent me from working, and also from caring for my disabled child alone....and, as I'm unable to function at home, or outdoors without support, it also prevents my husband from working.
Although, given that I care for my disabled child (to the best of my abilities) with hubby's help, and he cares for us both (full time) with no help, I'd ask those who see fit to judge us (with all due respect, Mr Cameron) to define *hard working people*.
I'm terrified of the benefits system, I fear the dreaded brown envelope (DWP letter) every day - the sound of the post man fiddling with the letter box puts me on edge before anything hits the mat - the site of any brown envelope on the hall floor puts me in a state of panic, which continues to have a negative affect on me long after hubs has checked the contents, and reassured me that today is not the day that I will have to begin AGAIN the process of proving how disabled I am!
It's a daily, overwhelming fear....I have no idea when the next letter will come, but one thing is certain - It will come!
If, after that next assessment, the powers that be decide that we are no longer (in their opinion) entitled to support, I will STILL be disabled, my daughter will STILL be disabled, and my husband will STILL be a full time carer. The ONLY difference (other than making us sicker) such a decision would make; is that we would have nothing to live on!
We're less than a week away from General Election 2015 (time of writing) and I'm terrified the Tory's might manage to 'lie' their way in for another term, because, dear reader, if they do; they will be coming for me and mine, and quite possibly (if you are reliant, or become so) you and yours too, and there won't be a damn thing we can do about it!
Thank you for allowing me to share
GOD bless you and all those you love
Kimmie x Copyright©2012kimmie All Rights Reserved
NB: The above thoughts, observations, opinions, are based on my own experiences, and those of disabled people I know, or who's experiences I have read about. I do not presume to speak for all disabled people.
LORD, I pray for all sick and disabled people who have died, and for all who mourn them. Amen
Related posts:
I do not like that Cam-I-am
A Fine Line
Now, after five years of Cameron and co, the rich are richer and the poor are poorer, well, I expected that!
I knew the Tories wouldn't have any interest in, or feeling for, the 'common' people.... but (and this is a big BUT!) I never expected them to hurt people like me, or my daughter!
Why? - What might exclude us (and others like us) from Tory 'wickedness'?
Well, my child and I are both disabled - they wouldn't go after disabled people, would they?
****
Over the past five years the coalition (Tory) Governments draconian cuts, cruel assessments, and relentless propaganda have pushed (many) sick, disabled, and mentally ill people worryingly close to the edge - pushed some (largely unreported by the media) 'too far!'
My daughter and I didn't choose disability, she certainly didn't; she was born disabled. There's not a lot we can do to change our 'scrounger' status, either we take the 'handouts' (social security) from the same pot my husband paid into for years I might add, or we starve!
Of course, my 'Littlie' (going on 10, with a mental age of 5) has no idea that (Thanks to Tory/media rhetoric) our family would be judged negatively (by some) she has no idea that Cameron and Co have attempted to create a Britain that may not welcome the disabled adult she will one day become.
I know though! I know, and I am afraid, afraid for myself, afraid for my disabled friends, afraid for all (reliant) disabled people living in Britain.... but above all else, afraid for my child!
Many disabled people have had their lives turned upside down over the past five years - some have not survived the onslaught.
Vulnerable people, who (and I should know) are desperately afraid - deeply affected by right wing 'scrounger' propaganda, and increasingly concerned about their future.
People who's symptoms of illness/disability (in many cases, including my own) have been greatly exacerbated by an overwhelming fear of the next WCA (Work capability Assessment)
An
Mentally ill people who are terrified by even the idea of having to expose themselves (face to face) at a ten minute (tick box) assessment (to a complete stranger) who is unlikely to be qualified to assess Mental Illness, and even less likely to empathise.
People who are despairingly aware, that even if they are lucky enough to pass the assessment, it won't be long before the process begins again.
Many are self-harming, some feel/or have felt that suicide may be a better option than continuing to battle both debilitating mental illness/disability, and the 'powers that be'.
As most of you know (physical disabilities aside) my own symptoms of Mental Illness interfere with my ability to cope with many everyday activities without the support of my husband, and those things I do manage alone, are only doable if he's nearby.
I could give for instances but we'd be here all day; so I won't.
Most significantly, for the purpose of this post, is that my disabilities prevent me from working, and also from caring for my disabled child alone....and, as I'm unable to function at home, or outdoors without support, it also prevents my husband from working.
Although, given that I care for my disabled child (to the best of my abilities) with hubby's help, and he cares for us both (full time) with no help, I'd ask those who see fit to judge us (with all due respect, Mr Cameron) to define *hard working people*.
I'm terrified of the benefits system, I fear the dreaded brown envelope (DWP letter) every day - the sound of the post man fiddling with the letter box puts me on edge before anything hits the mat - the site of any brown envelope on the hall floor puts me in a state of panic, which continues to have a negative affect on me long after hubs has checked the contents, and reassured me that today is not the day that I will have to begin AGAIN the process of proving how disabled I am!
It's a daily, overwhelming fear....I have no idea when the next letter will come, but one thing is certain - It will come!
If, after that next assessment, the powers that be decide that we are no longer (in their opinion) entitled to support, I will STILL be disabled, my daughter will STILL be disabled, and my husband will STILL be a full time carer. The ONLY difference (other than making us sicker) such a decision would make; is that we would have nothing to live on!
We're less than a week away from General Election 2015 (time of writing) and I'm terrified the Tory's might manage to 'lie' their way in for another term, because, dear reader, if they do; they will be coming for me and mine, and quite possibly (if you are reliant, or become so) you and yours too, and there won't be a damn thing we can do about it!
Thank you for allowing me to share
GOD bless you and all those you love
Kimmie x Copyright©2012kimmie All Rights Reserved
NB: The above thoughts, observations, opinions, are based on my own experiences, and those of disabled people I know, or who's experiences I have read about. I do not presume to speak for all disabled people.
POSITIVE THOUGHT
PRAYER
Related posts:
I do not like that Cam-I-am
A Fine Line
Wednesday, 18 March 2015
Feigning Control ........ #MicroPoetry
Thank you for allowing me to share
God bless you, and all those you love
Kimmie x
Friday, 27 February 2015
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!
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
Tuesday, 24 February 2015
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
Thursday, 5 February 2015
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.
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