My Name Is 'STIGMA'

Within hours of meeting (in the virtual sense) the young lady I want to share with you today this is what I saw - A beautiful, vibrant, fun loving young lady who appears to live life to the full. 
Her eyes light up when she smiles (she smiles a lot) she goes out with friends, looks stunning in a little black dress and she loves her family.

I was able to determine all of the above just by looking at some photo’s that ‘Emelie Crecco’ had shared on Facebook.

I was NOT able to determine on sight alone that the beautiful (healthy looking) young woman I was looking at (stalking for the purpose of this post) has a serious and potentially life threatening genetic condition.   

I should clarify here that I was aware of Emelie’s disability before I saw her pictures (I’m not in the habit of randomly stalking and writing about strangers) my point is - I know Emelie is disabled because (and only because) ‘SHE TOLD ME’ initially (indirectly) via her Facebook status and then later face to face (screen to screen would be more accurate) in more detail via email.

Before I get to my reason for this post I’d like to briefly explain how CF affects Emelie.  

Emelie was born with cystic Fibrosis (CF) – now twenty years old she lives (behind the smile) with the knowledge that the average life expectancy for a person with CF is 38yrs.

Emelie’s condition is serious, causes a range of debilitating symptoms and is incurable.

She has a compromised immune system and needs to avoid where possible others who are sick. – Even a common cold might easily escalate into a full blown (possibly life threatening) lung infection.

Her body produces thick, sticky mucus which clogs up her lungs and pancreas, daily (multiple) inhaled treatments and other meds alongside extensive physiotherapy are essential to her well being.

She has more check - ups with the doctor than most people have hot dinners and is frequently too sick to do any of the things I observed her doing in her photo’s.

In addition to the symptoms outlined above Emelie’s body can rapidly become depleted of salts especially when the weather is hot causing at best chronic fatigue - weakness and at worst fever - muscle cramps - stomach pain – vomiting - dehydration and even heatstroke!

This brings me nicely (or not so nicely as the case may be) to my reason for this post……

On the 17/6/13 (an extremely hot day) Emelie had some errands to run around her town, she wasn’t having a particularly good day, she was finding breathing a little harder than usual and struggling with the heat so decided on this occasion to take advantage of her ‘handicap sticker’ (better known here in the UK as a disability badge – Emelie is American)

Despite being disabled herself and quite within her rights to use her badge every time she’s out (contrary to popular belief they’re not handed out without good reason) ‘Emelie’ chooses only to use this *passport to manageable walks* on bad days preferring where possible to leave disability spaces free for other disabled people!  

Anyway she parked up in a disabled bay, displayed her badge and went off to see to her errands. I imagine (though I wasn’t there so could be wrong) that she was probably wearing her *every-days a gift smile* as she went.

Unbeknown to Emelie as she *puffed* herself away from her car and down the street she was being observed! 

When Emelie returned (flagging a bit with the heat) to her car she found a scribbled note stuck on the window.

It read…. Shame on you, you are NOT handicapped – you have taken a space that could have been used by an actually handicapped person – You are a very selfish young lady. 

In the time it had taken Emelie to park up, display her disability badge and leave her car not only had *Mr/Mrs Stigma* decided they knew enough about her to judge her as a liar, a cheat *A selfish Young Lady* but they had publicly branded her as such too!   

They hadn't approached her, asked her why she was parked in a disabled bay (Though in my opinion she would have been quite within her rights to tell them to bugger off and mind their own business) instead they had (in their ignorance) on sight alone (mis) judged her! 

Their cowardly scribble might just have well have read - 'My name is 'STIGMA' and I am judging YOU'! 

Emilie’s initial reaction was anger (I believe livid is the word she used) and who could blame her!? However it wasn’t too long before her own feelings were replaced with concern for other sufferers and this led her to think about how her experiences that day might (through sharing) help raise awareness as to the severity of Cystic Fibrosis while at the same time opening people’s minds to the fact that not all disabilities are visible.

There has been a huge, (sympathetic) response to Emelie’s story so far and if you would like to support her awareness campaign yourself you can contact her either via Facebook >> Facebook.com/TeamEmelie or Twitter >> Emelie Crecco ‏ @emmcrecc I’m sure she’d love to hear from you.  

POSITIVE THOUGHT

I think it’s appropriate to take my lead from Emelie on this ‘positive thought’ occasion so in her words >> “Sometimes, people are fighting a battle that you can't see. Stay educated everyone. Be kind to people” ~~ Emelie Crecco ♥   

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 as always my friends for allowing me to share

God bless you and all those you love

Kimmie x 

ABOUT A MAN

Forty nine years ago, money was tight for The-Man. For months he, (after ensuring New-Wife had everything she needed to keep a roof over their heads and food on the table) religiously banked anything caught in the lining of his pockets at the end of each week; in the vain hope of owning a car. By the early months of 1965 he was finally in a position to purchase a cheap run-around.  
However, unbeknown to him, New-Wife was about to let him in on a little secret.

He returned home from work one evening (details of chosen car in hand), and was greeted by a beaming New-Wife; and the news that his hard earned savings had (that same day) been De-banked and... exchanged for a coach-built-pram! 

The man’s initial reaction to the news that his first child was on the way was only very slightly marred by the realisation that the only four wheels he would be getting behind for the foreseeable future would be of the baby carrying variety.

Over the next few months his bank balance shrank as fast as his wife expanded, but he was happy, and two days after Christmas 1965 The-man could be observed running (no car remember) from hospital to home (a good few miles) excitedly passing on the news of his new baby girl to anyone who’d listen.

The-man went on to have two more of his own daughters, and much later on in life acquired (on marrying his second wife) two step-daughters; who he would come to love as his own.

He would also go on to have a wide variety of cars.

The-man worked various jobs through the early years of his first marriage but finding little satisfaction in any of them, decided (during the 70s) to train as an ambulance man. He loved the job, and was good at it.

He later went on to qualify as a fast response paramedic.

Through the years he treated a lot of people and saved many lives; those he was unable to save he treated (until last breath or handover) with gentle care, reassurance, and compassion.

Over the years, The-man dealt with - attempted suicide, actual suicide, births, deaths, aggressive-drunks, car crashes, near misses, house fires; and a variety of other incidents.

He was first on scene to a guy with extensive and life threatening injuries, who was trapped in a mangled heap of once-was-car!

His own fear was well masked as, with soothing tone and reassuring words, he placed an oxygen mask over the guys face.

He was (after realising that the patients lung was compromised) inwardly horrified and incredibly stressed. Outwardly, he was (as always) calm and quick to respond.

With perspiration running down his neck and adrenaline working overtime The-man (with an award winning impression of calm) explained to his patient that he needed to insert a cannula and syringe directly into his lung.

Despite working in unsterile conditions, and having only ever performed this procedure once before (on a dummy in training class) he then got on with the job in (shaky) hand.

It was not entirely clear as the driver’s skin began to pink up which of them was most relieved!

The-man was a devoted son; nursing his mother through the last years of her life with humility and patience, and (despite a childhood damaged by drunken rages and random beatings ) his father was afforded the same humility and patience when he needed it.

Shortly after the birth of his disabled Granddaughter in October 2005 The-Man flew home from holiday at a moments notice on receiving this text message - “Come home Dad, please come home Dad, I need you.”  

He left his second wife in Spain and jumped on a plane, just like that.

Did he know that (despite her being already surrounded by more family than the special care baby unit could handle) his child, (above ALL others) just wanted her dad? Did her reasons for not being able to cope without him for just a short while longer matter?

Of-course not; She needed him, he came... simple as that!

‘The man’ has been a loving husband; to both first and second wife. He continues to love and support the first, and adored (beyond words) the second; until 'death did them part'.

To his Grandchildren, he’s all the things the word ‘Granddad’ brings to mind. They love him to bits and he them.

To the thousands of men, women and children who were lucky enough to find him on board the ambulance that came in their hour of need; he was a hero. 

To his kids, he’s a big old softy whose eyes read ‘I love you’ whenever he looks at them; slow to anger,  quick to forgive. 

Always there (and if he’s not there he’s getting there!)  

'THE MAN' IS MY DAD.       I love you dad x  

***

POSITIVE THOUGHT

'The man', on the beach; bare burnt chest - white legs - faded shorts - longish socks and high shine polished shoes. 

A snap shot in my mind that still makes me smile, though I can assure you, Teenage-me was not impressed (cringe) not cool dad, not cool at all!  o_O 

***

Thank you for allowing me to share

God bless you and all those you love  

Kimmie x 

Other 'Dad' related posts The Man has Cancer  >>  It's your birthday and I'll cry if I want to

'Twitter just' Guest Post

The following post was written by a twitter friend of mine >>  BPD FFS sue sibbald @BPDFFS 

Sue campaigns for better services for people with BPD (BorderLine Personality Disorder) - She is a Governor at Sheffield Health and Social Trust runs and also trains CMHT staff in BPD awareness.
You can join Sue on Sunday evenings at 9pm for chats by following #BPDchat on Twitter

Sue has agreed to be my guest this evening (Thanks Sue) I feel many of you will relate to what she has to say.

It is with great pleasure that I now hand you over to 'Sue'. 

TWITTER JUST

Abandonment rejection, I don’t do endings, endings do me. My Achilles heal, my dark dark cave, my shame, my place where I hurt so much I can’t move. 

Imagine the shame of being so attached to someone that when they leave its catastrophic, imagine you know the people who care for you know that. Imagine my shame, imagine my shame. Slow down, I slow down, I cry I cry, my pain is like a fire burning me - memories - my past  - my being left. I want you to stay, don’t leave me, don’t leave me. 

You overdosing, I see you from the stairs, I’m so small and I remember, away you go, *again* and I can’t be with you, I’m frightened, I’m so scared of you, but don’t leave me, don’t go. Don’t go! 

My mum - no support - schizophrenic.

The diagnostic manual DSM IV that gives us our label states the following as one of the five of the nine criteria needed for a diagnosis of BPD > Frantic efforts to avoid real or imagined abandonment.

Oh I imagine abandonment everywhere!

Attachment theory says failure to form secure attachments early in life can have a negative impact on behaviour in later childhood and throughout life ~ 'Bowlby 1969 and Ainsworth 1978' . 

Trauma early in life causes disorganized attachments - I don’t know if it’s safe to be with you or should I run away - I so want to be friends with you - I don’t want to be alone but watch out I don’t trust you - you’ll hurt (me run away, run away) Accept and reject, I hate you don’t leave me. Push and pull. I STAND ALONE and I cry. Friends are so hard.

(Bio/Social theory says we are born emotional into an invalidating environment which causes difficulties in managing our emotions)
It means I don’t do endings, I see people rejecting me and abandoning me, everyday, in every small way. 

A text not returned - ignored on Twitter - people being late - feeling left out and I talk to myself all day, an internal conversation, "it’s not real" - "the traffic is bad" - "they’re busy" but still I bite my lip, I dig my nails into my hand, I can’t cry in front of you, oh the shame! 

I should be strong, big girls don’t cry. DON’T CRY! And I cry inside and I cry like now.

I’ve started to log my feelings of abandonment and rejection. I’ve started to understand my triggers and although I still feel the pain I’m learning to manage my behaviours. I talk to me, I’m learning to self sooth be kind to me, understand me. I see endings as beginnings. Although it hurts and I feel.

Just don’t leave me. 

View all posts by bpdffs » 

_________________________________________________________________________________

Thank you my friends as always for allowing me to share, please do look Sue up via one of the above links, I'm sure she'd love to connect with you. 

God bless you and all those you love 

Kimmie X

Before you go can I ask you please to take a look at the WOW petition below? Please sign to help WOW fight Government cuts to Disability services and benefits! Thank you x

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

                                             

A Fine Line...!

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 (though I’m far from recovery and therefore not really qualified to advise) I felt that sharing my experiences might help other sufferers 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 months I’ve had various conversations with friends (some via twitter, one face to face) who have recently self - harmed or are struggling with thoughts or urges relating to self - harm.

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.  

Some of the people I spoke to have complex mental health issues (some have physical disabilities too) and they all told me that their self- harm and/or suicidal thoughts are related to fear of their 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 treatment that so many have endured at these 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 - deeply affected by right wing ‘scrounger’ propaganda and very concerned 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 mental illness and the ‘powers that be’.

Many 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 fit for work and supported them accordingly.

Am I afraid? Yes I’m afraid, Very afraid. 

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 my own self harming behaviour has increased both in severity and frequency.

Do I want to continue living with this daily, nightly overwhelming, debilitating fear? 

NO! Oh God no, it’s too much, too much….!  

I can’t see an end to it and my own symptoms have been greatly exacerbated.

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 fear of 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 now and I didn’t in 1986 when life, other people (and my own 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 mental 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 & cruel propaganda are pushing many already vulnerable people worryingly close to - *can’t take anymore*.

POSITIVE THOUGHT

I'm 27 years on, I'm still here and my fifth child (my last baby) is nagging me to move away from the lap top and use my imagination. I cannot stress enough how thankful I felt this evening when she rolled in from school and threw her smiley, gorgeous self into my arms. 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.

PRAYER

Father, I pray your protection this day and always over the lives of all sick and disabled people. 

I pray peace for those who are oppressed, despairing, afraid and strength for those who are close to giving up.

I’m weighed down with their despair and with my own. I want to do something, make a difference - I don’t know how!

I’m open to suggestions Lord, in the meantime I place me and mine and them and theirs into your hands.  Amen.

Thank you as always for allowing me to share.

GOD bless you and all those you love

Kimmie x                             Copyright©2013kimmie All Rights Reserved