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. 

I am...

When other mental health sufferers say they are ashamed (many of them are, for one reason or another) I'm usually the first to respond with - "You have nothing to be ashamed of, you can't help being ill" - and I mean it!

However, I'm afraid it's a case of 'Take my advice, I'm not using it', because there really is no other word than 'ashamed' that describes how I feel, overwhelmingly so, and have felt for a very long time.

My 'shame' might not be rational, but it is 'my' truth, and that's what this space is for.

I AM

I AM MUM - To my youngest child (as I once was to my older children) I am story teller - sock puppet  - Tickle monster - make-believer - hugger - hand holder - love; no questions asked.

My four older children are a different story - these days (though they try hard to hide it) they are uncomfortable around me, resentful, ashamed.

They're no longer babies, I can't hide behind, sand castles, sock puppets, and 'sing a song of sixpence' anymore.

They don't understand mental illness, they can't see 'Stuck-In-Scared - but they can see whats going on externally, and it frightens them.

I love my kids and they love me. I have never set out to hurt them, but (without meaning to) hurt them (emotionally) I have!

I am ashamed.

I AM WIFE - I am the wife who almost drove my husband away, because I was blind to how my illness affected him.

He says that blinded by my mental illness (which in fairness has been greatly exacerbated this past few years) he lost sight of ‘me’ - he’s sorry - he loves me - he’ll never hurt me again.

I blame myself - I'm looking into his eyes, and seeing, Where I once saw special, everything I despise about myself reflected back at me.

I am ashamed.

I AM ADDICT (In recovery) - I am the woman who, consumed by symptoms of mental illness, used gambling as a form of escapism. despite knowing she was hurting herself, and those she loved.

I am the grown woman who once sat on a stool in a bingo hall, and wet herself because she'd pumped too much money into a fruit machine to chance another punter stealing her win while she went to the loo!

I am the mother who was often late picking her children up from school because she couldn't walk away - who struggled to feed her children, and went hungry herself, because she'd gambled best part of the housekeeping.

I am the mother, who (up until ten years ago) thought more often about her next bet, than she did her children, and her older children remember that!

I am ashamed

I AM OCD -  "I see the brush slam down onto the back of my beloved child's head. I hear her desperate screams as the brush comes crashing down! I see myself standing over her, a stranger masking my face, the mask vaguely familiar and yet at the same time completely unrecognizable! I see my child confused, hysterical and consumed with fear beneath me. I repel with every fiber of my being against the *illusory images*; my heart breaks!" read more

I am ashamed

(Please be aware, the above paragraph has been recycled from an old post, and is about intrusive thoughts, a symptom of OCD - NOT child abuse, you can read the paragraph in context by clicking on the (read more) link above. Thank you.

I AM SELF HARM - Sometimes I feel desperate, sometimes I feel angry, unimaginably angry, angry at me, sometimes I crave feelings of relief, calm, control - sometimes I just need to feel.

I starve, burn, cut, bleed, I am visibly scarred.

I am ashamed

I AM AGORAPHOBIA - I'm unable to go anywhere alone, unable to go out at all some days.

Despite being accompanied in public, I often experience catastrophic thoughts, often experience paranoia, and sometimes experience panic attacks  - sometimes it's clear to onlookers that I have issues, my awareness of this exacerbates anxiety, and shame.

My inability to go anywhere alone places a great burden on my family, especially my husband.

I am ashamed.

I AM EATING DISORDER -  probably the most terrifying symptom of mental illness Iv'e experienced yet, and the one I find the most difficult to write about.

This relatively new addition to my mental health issues frightens the life out of me, and I simply cannot find any 'justifiable' reason for starving myself half to death when I have five children who need me to be strong, and ALIVE!

I am ashamed.

(2016 edit...I have made some progress since this post was published, two years ago. I'm still unable to eat in front of people, and my eating is still somewhat disordered, but I am eating now (as opposed to surviving on cuppa-soup and coffee) and my weight is within a healthier range...there is progress. I'm not there yet, but I'm getting there... I think.)

I AM BENEFIT CLAIMANT - My youngest child and I are both disabled, my husband is our carer, we didn't ask to be a burden on society (Tory words, not mine) but we are - we take the 'social security' (incidentally, from the same system, that my husband paid into for 20 years, before taking on the role of full time carer) or we are unable to survive. 

Fear of the Government, the media, and the benefit system, fear of those in society who have no understanding of invisible illness/disability, and are taken in by the 'scrounger' rhetoric, has led to a dramatic increase in my symptoms, and has caused an Eating disorder, that I did not have prior to the UK Governments combined attack against welfare recipients.

It seems these days its almost impossible to read a newspaper without the words, liar - cheat 'scrounger', jumping out from the page.

I feel judged - by Government - media - society....I'm afraid that you, dear reader, may be judging me right now!

I am ashamed.

I AM DISABLED - Damaged 'stock', a drain on loved ones, a drain on the state.

I am ashamed.

POSITIVE THOUGHT

I AM ME - I am Me - I'm loving, kind, empathetic. Compassionate, generous, passionate. Creative.

I have a child-like way about me (not always a good thing), a wicked sense of humour, and a heart for the hurting.

I like Christmas, a lottle (that's like a little but a lot). I'm obsessed with Betty Boop; there may be more Boops in my house than there are in the Boop-Shop.

I love: Clouds, the sound and smell of the rain, the sun on my face, sand between my toes. Sausage meat between my fingers (that's not as mad as it sounds). Paddling. Puddle jumping. Mud between my toes. Being with my kids. Cappuccino!

I hate: Cruelty. The current UK Government. War. Greed. Fish (unless it's cod...cod's okay). Oh, and the wind; I HATE the wind, it's so... so irritatingly-windy!

I have a fabulous imagination, and the ability to get right down on a child's level, and I mean right down; like 50 going on five down, so I make a great playmate, Where my relationship with my children is concerned, these qualities are my saving grace.

PRAYER

Lord, I pray that the eyes of those who 'see it how it isn't', be opened, and the voices of those 'who tell it how it is', be heard. Amen.

Thank you for allowing me to share

God bless you and all those you love

Kimmie x

Related Posts
Just For Today
A Rant
A Fine Line
Agoraphobia (poem)
 Where I once saw special
Stranger Within

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Sick NOT scrounging! #WOWpetition

I have been asked by the organizers of the 'WOW' campaign to write a piece on why I personally support the WOW petition. You will find details about the campaign just below my own little ramble. Please do sign it only takes a moment and your signature could be the one that makes all the difference!


So here friends in short are my reasons for supporting the WOW petition.

My child and I are both disabled. We didn't ask to be or want to be a burden on society but we are! There is no choice, either we take the handouts that so many believe us unworthy of or we are unable to survive! 

If under the new benefit reforms the powers that be decide that we no longer (in their opinion) qualify for benefits we will STILL be disabled! We will STILL need my husbands full time care. I would STILL be unable to go out alone or care for my daughter alone! The ONLY difference such a decision would make is that we would have nothing to live on!

My daughter was born disabled, she will always be disabled, she will always need support from another person to survive, she will always have to rely on welfare, she will not be able to navigate the system alone! I fear for her future!

I feel terrified of the benefits system and I am fearfully obsessed at what they will throw at disabled people next. Aside from fearing for my own family I feel deeply concerned by the impact that cuts to welfare and services are having on other sick and disabled people.

I fear the dreaded DWP letter every day, the sound of the post man fiddling with our letter box in his efforts to deliver our post puts me in a state of panic which continues to have a negative affect on me long after my husband has checked and reassured me that today is not the day that I will have to begin AGAIN the process of proving how disabled I am! 

Its a constant and overwhelming fear. 

A letter could come tomorrow, next week, next year but one thing is certain, IT WILL COME and as the process first time round has made me extremely unwell (now physically as well as mentally) I'm not sure I would survive the process second time round!

Fear of the Government, the media and the benefit system, fear of being judged by those in society who have no understanding of invisible illness/disability and are taken in by the 'scrounger' rhetoric have led to a dramatic and terrifying increase in my symptoms and have caused additional disorders that were not there prior to this combined attack against welfare recipients! 

Over the past year as a direct result I have developed a serious Eating disorder (self starvation) I'm awaiting tests to determine if the pain in my bones and joints is the onset of osteoporosis bought on by my eating disorder. My hair is falling out through stress and lack of nourishment and my existing mental health issues which have troubled me since childhood and were already extremely debilitating have been greatly exacerbated!     
 
In addition to the fear of the next ESA assessment there is also the fear of the PIP assessments which all disabled people will have to endure when the process of replacing DLA begins. 

Before this cruel campaign against the most vulnerable people in society, I was just about managing with huge restriction and controls in place to cope! My husband was managing to get through most days with a smile on his face and our daughter was the centre of our world.
 
Today my husband and I just about manage existence and our daughter who has complex care needs is caught up in the middle wondering why mummy doesn't play anymore and daddy doesn't smile!

Please continue reading to find out more about the WOW campaign.

Spearheaded by Actress/comedienne 'Francesca Martinez' WOW petition is NEW and INCLUSIVE 

 

Francesca Martinez discussing Welfare Reform on This Week

 

On Tuesday 18th December, disabled and sick people, people with learning and mental health difficulties, their families and carers launched a petition calling for an end to the War on Welfare being waged by their own government.

The Welfare budget, and particularly benefits going to sick and disabled people, has been heavily and unfairly targeted for cuts. It is said we can no longer afford the current welfare state. In reality however, as a percentage of GDP, the welfare budget is now lower than it was at any time during the eighties. While at the same time the combined wealth of Britain's 1,000 richest people increased by almost 5% to over £414bn.

In order to resist the government's cruel and failing welfare policies, sick and disabled people, together with their carers, families and friends, have combined using social media to produce the #WOWpetition. This calls for an end to the War on Welfare. Spearheaded by actress and comedian Francesca Martinez the WOW petition aims to get 100,000 signatures to end this War on welfare by the Government.  We will be calling for a Cumulative Impact Assessment, an independent inquiry and if necessary, the repeal of the Welfare Reform Act of 2012.

We believe that every single person in the country has a reason to resist the War on Welfare. Some of us may be fortunate enough not to need the safety net our Welfare State provides, but this could all change for any one of us, tomorrow. It only takes an accident or a shock diagnosis to render us ill or disabled, and dependent on a system of benefits and services which is currently being dismantled.

The 'Greatest Generation' fought WWII believing they had secured this safety net for themselves, their children and generations to come. Don't let it go without a fight! We owe it to them. We owe it to ourselves to ensure a decent and dignified life for all who are sick and disabled, and to provide security for all our futures. The deaths of disabled people linked to the Welfare Reform Act and the Work Capability Assessment administered on behalf of the Government by the private corporation Atos are reported in the press with alarming regularity. We believe that in any humane society the Government would want to know if one of their flagship policies was in any way responsible for a 'slow genocide' of the sick and disabled. Please join Francesca Martinez and the WOW campaign in resisting the deaths and unnecessary suffering being caused: Sign the
document on the government’s e-petitions website
 
For more information you can click on one of the links below:
 
www.wowpetition.com
Twitter @WOWpetition & @WOWpetitionchat
Facebook WOWpetition 

The WOW Petition Forum

 

Thank you for taking the time to visit my blog, I will finish as I always do on a pray and a positive thought.

 

POSITIVE THOUGHT

Over 52,000 people have already signed the WOWpetition. For the first time in a long time I feel hopeful.  

 

PRAYER

Lord, Please bless all those who are sick, disabled and afraid for their future. I pray for all those who care enough to fight alongside them for their right to live with dignity and security. Amen 

 

Thank you for allowing me to share.

 

God bless you and all those you love

 

Kimmie x

SADNESS IN THE MIRROR!

I tried to write last night and the night before that, in fact I have attempted putting pen to paper ( or in my case, fingers to keyboard)  almost every night this week!

So friends tonight I shall write in brief about all the things that I have wanted to write about and my reasons for not being able to write about any of them.

With the media full of child abuse stories I have desperately wanted to write about my own experiences as a child. However I have felt unable to do so for the following reasons.

People are so distressed by the horrors they are hearing about on the news that I feel the last thing they need are more tales of abuse. I was mentally and physically abused as a child but never sexually abused and therefore cannot begin to understand the pain those children felt, though I do empathize.

These stories have affected me terribly and have had me reflecting more than usual on my own childhood. However I have been unable to write down my own experiences for fear of somehow playing down the horrors that these people faced as children which were clearly far worse that anything  I ever had to endure!

I have wanted to write about my depression, anxiety and insomnia all of which have been exacerbated over the last year or so due to fear of Government attacks on disabled people.

I feel overwhelmed with worry not just for myself but also for the thousands of other mentally and physically disabled who are being persecuted, some of whom since joining Twitter I now call friend.
I care about them as a friend should care and it hurts me to know that they are suffering.

I feel powerless to help them or my own family. Fear of our future and campaigning for a secure future for all has taken over my life and serves only to make me sicker as I’m sure is the case for many. 

I have wanted to write about the Eating disorder I am now struggling with (also a direct result of fearing the powers that be!)
However while this new addition to my already complex mental health issues  frightens the life out of me I simply cannot find any sensible reason for starving myself half to death when I have five children who need me to be strong and ALIVE!
Anything I try to write with regard to this just adds to the guilt I feel at not being able to put my children first.

This week has been a low as low can be kinda week, my depression which never really goes away has been overwhelming.
It would so many times this week have been cathartic to write about how dark and despairing my days have been but I have found myself unable to for fear of dragging everyone else down with me.

I’m not sure how to inject humor or enjoyable reading into ‘Depression. Is there a way of explaining why I cry alone in my room while hubby, child and dog play excitedly together downstairs.

Does anyone really want to hear about how hard it is for me to refrain from taking my secret weapon (a pair of hair scissors) from my dressing table drawer while all the time knowing the relief the blades would bring.

If a book you were reading painted the scene of a miserable, sobbing middle aged woman staring hopelessly at her reflection in the bedroom mirror would you now be flicking the page enthusiastically desperate to get to the next paragraph!  I doubt it and who could blame you.

Nether the less as this blog is now turning out to be rather cathartic I will pretend you are all still with me and carry on.

So there she is this pathetic self pitying creature slumped in front of her mirror, tears raining down her long haggard face. Her complexion is grey, the bags under her eyes would serve nicely for getting the food shop home on Friday and her once thick (though always slightly frizzy) hair has been falling out for weeks through lack of nourishment.

Truly I tell you the creature I describe is damned UGLY! In my opinion no one does crying beautifully but any beauty she might once have had has been well and truly stripped away by ’Anorexia’, insomnia and stress!

Through the rain she looks despairingly at her reflection, the expression in the eyes of her mirrored self is one of pleading, this woman is in such pain, unbearable overwhelming pain. Whispering now just loud enough for the sadness in the mirror to hear and careful not to the destroy the little bit of happy that is still going on downstairs she pleads out loud with the creature staring back at her. “Help me, Help me, Oh please help me, please help me” then as the expression in the eyes that she sees in the mirror switches from one of pain to anger she turns away and quietly opens the dressing table drawer....

Well considering the hours I have sat in front of my laptop this week unable to write a thing, I’m not too sure where that little lot came from!
I do feel slightly better though for throwing a bit of my muddled mind your way, so if you made it this far down without wanting to go and talk to your own reflection, Thank you.   

PRAYER

Lord, I pray for all victims of child abuse past and present, that they find peace and that justice be done. Amen.

POSITIVE THOUGHT

I managed to eat a bowl of raw vegetables tonight and my first appointment at the Eating Disorder clinic was no where near as bad as I anticipated.

Thank you for allowing me to share

GOD bless you and all those you love

Kimmie x                                                  Copyright©2012kimmie All Rights Reserved