Best Foot Forward …

The only photo of me in the flesh that you’re likely to ever see! I’m shy.
Make the most of it – it’s not likely to happen again 😉!

I thought I’d give you a little background information about my disability. It’s not something I’ve previously spoken about much in my blog, so this is my story.

I started life as an able-bodied little girl who did all the usual activities that young children do. I was always small, skinny and underweight, but there were advantages to being as I was. I could shin up the gym apparatus faster than many children in my class. Considering I was sometimes thought of as a weed, I did pretty well. I grew up, married, had my two children, Tom and Clare, and then my ex left. I continued to raise the children alone and also had to work to bring some money in for us to live on. It was a tough time, but I was very content. Between school runs, the children’s football matches and netball, I was a carer and home help for ten years (I’d initially trained as a secretary and worked in the City of London for several years). I combined my work which I loved, with caring for Tom and Clare; we were a very happy little family.

When the children were about thirteen and eleven, I saved enough to take them to the funfair in town (Essex in the UK). It was there that I had my accident which was to change the course of my life.
When our carriage crashed, I felt a tremendous jolt that jarred my neck and spine. Eventually, after a lengthy spell in hospital (with my children staying with my Mum) and with many tests, x-rays, scans and examinations, the doctors decided I’d damaged the nerve endings leading from my spine. They said it was permanent. It was an awful lot to come to terms with, but over time, I grew, not so much to accept it but more to live my life despite it. I wasn’t about to give in easily. The pain was awful, though, and I was on morphine for quite a while. It wasn’t all bad – I was away with the fairies much of the time 😄!

Fast forward twenty years. It was recommended that I have a DEXA Scan as osteoporosis was suspected, given that I’d always been small-boned, had experienced a few years previously with anorexia, and being unable to exercise very often. When I got my results, I was unsure who was more shocked, the radiographer or me. My T-scores were appallingly low. A score of -2.5 indicates osteoporosis, but mine was -4.5, which meant I had severe osteoporosis.

Degrees of osteoporosis
Mine is severe, meaning there is more air space (in brown) and very little solid bone (shown in beige). It’s a wonder I haven’t entirely disintegrated!!

I was told I could die if I fractured my hip or be left even more disabled if I injured my spine. I have to admit I was scared – very scared. Every move I made seemed risky, and I lived in fear for a while. I became super-careful with everything I did, but two years ago, I tripped over Peanut (my new cat) while transferring from my wheelchair to my walking frame. There I was being rushed off to Accident & Emergency for the second time. I was in agony. I’ve never felt pain like it. After all the x-rays and scans came back, the doctors announced that I’d broken my pelvis, not once, not twice, but in six different places. I don’t do things by halves. If I’m going to have an accident, I’ve got to do it in style!

Strangely enough, contrary to what most people would think, I don’t have any regrets; I’m not angry or bitter or in the least bit dissatisfied with my life. I am who I am. Without the experiences I’ve been through, I wouldn’t be me. I wouldn’t be Ellie.

My next post (Part Two) will be about my journey back to good health and where I intend to go from here on in.

Okay … these aren’t my legs, but just an indication of where I go next on my journey. Look out for part two.

Hospital Break

TO ALL MY READERS AND FELLOW BLOGGERS,

UNEXPECTED NEWS

This brief but important post is to let all my readers and fellow bloggers know that I’ve unexpectedly got to go into hospital for an urgent operation tomorrow 😢. I’m being picked up first thing in the morning, so, as you can imagine, I have an awful lot to do to get myself ready for my inpatient stay. The hospital estimates that I’ll be there for anything up to a week, depending on how the operation goes.

I sincerely apologise to all my blogging friends that it’s unlikely that I’ll be able to read your posts from now until I’m home and recovered again. However, if, after my surgery, I’m feeling well enough, I’ll try and catch up with some of you from the hospital as I’ll have my phone with me. You never know, I might even feel up to writing a short post from my bed!

In the meantime, please, stay safe and well and keep writing all the beautiful pieces that you all do so well. For now, take care of yourselves, and I’ll look forward to catching up as soon as I’m able. Thank you all for your understanding. Group hug 🤗🤗🤗 – Ellie xx 💜💖💙

THE THERAPIST (J.G.)

therapist and client

Having not having written regularly for some time due to family circumstances, I suddenly find myself writing again and recently this and the previous post (poem), both of which have a lot of meaning for me, are very serious topics.

As those of you who have known me for a while will be aware, I had, some years ago, an emotionally abusive and very damaging relationship with a therapist (who I am no longer with). This affected my mental health hugely and I was hospitalised for a while following this ending.

I still carry a lot of anger about this although I have tried to deal with it in my current counselling. I wrote this poem which I feel, is certainly ‘telling’ of what was happening during those years with her and why I am finding it hard to deal with my anger and find forgiveness as I, perhaps, as I should for my own benefit. 

I lie amongst the shadows

The new born of the old

Such innocence destroyed

Yet, none of this foretold

~~~

The tales we spun together

Which she led me to believe

Magnified reality

Their purpose to deceive

~~~

The I Ching books and Angel Cards

Were poetry in motion

* William Blake’s descriptions

Assured of my devotion

~~~

My identity was stolen

Soon a puppet on a string

I learned to tell more stories

And I wrote of everything

~~~

She pulled me to her bosom

She offered me affection

A love I thought forever

Then came the cruel rejection

~~~

I wonder where she came from

As she led me down the lane

Leaving me abruptly

In excruciating pain

  • The reference to William Blake refers to the fact that his book, ‘Songs of Innocence and Experience’ was the poetry book that JG gave me as the first of many gifts

It has taken me a great deal of courage to write this and I know much can be read into this poem so if you have any comments or views, I will happy to reply to them. Thank you for taking the time to read this, Ellie.

MAKE LOVE ~NOT WAR

Image result for Love and Destruction

A few parts of this post are taken from one of my previous post, last year, with some new additions, adjustments and amendments. It includes a poem (below) that I’d like to share with you. written by a friend, Katie. Some of you might have already read parts of it but for those of you who haven’t, I hope it touches you as it did me.

I don’t claim to be an expert or even a particularly knowledgeable person when it comes to the subject of Planet Earth. I failed geography and history, abysmally at school. However, I do care about what we are doing to our world and beyond. I care about all the people who have suffered and lost their lives, those who are still suffering and those who will suffer in the future whether it be by natural causes, illness, disasters, war, violence, poverty or by any other means.

I care that we are destroying our planet; destroying our population; destroying our people, wildlife, and nature. I care that we are ravaged by war and violence; that we are polluting our planet and the atmosphere. I care that a huge number of people are homeless, roaming the streets, roaming the deserts, the plains, the forests and the wilderness. I could continue further, but many of us know the facts already.

A very close friend of mine, Katie, wrote this very moving poem which I wanted to share with you here….

The winds of Mother Nature are blowing on the Earth
Accepting all we’ve done to her since our sweet sacred birth.
There are babies curled in cradles unaware of hate and crime
Dreaming of their Mummies in the loving hands of Time.
Forgive us sweetest Mother for the ways that we’ve grown old
For independent streaks in us that turned our hearts too cold.
We’ve sinned so much we’re hurting and the pain is plain to see
That first we were so innocent on a gentle, rocking knee.
How love could turn to awful hate and safety turn to terror
Is based it seems on single thoughts that have their root in error.
Behind us and in front of us is such an awesome Love
That would have us in its gentlest hold in time with God above.
If only we could fall down flat and beg to stop the violence
Our hearts might cry sincerely out, then rest in hallowed silence.                                    

©Katie Marsh 2015

The recent and past atrocities have really brought home to me just how fragile our lives are. If only the power of love could overcome the power of war then maybe, just maybe we could experience peace in our time. Perhaps it would be a start

I am scared for all our futures; I’m scared for our children’s futures, our grandchildren’s futures and all future generations after that, if by then there is still a habitable planet to live on. The list goes on and on … and on … and on … and on … until infinity …

MAKE LOVE ~ NOT WAR.

.gif - power of love - power of war

MY BPD – FROM THE INSIDE, OUT

 

BPD shattered glass masks

I know this image looks a bit melodramatic but for anyone who hasn’t experienced BPD – yes – it is this dramatic some of the time. I was going to write a post about BPD (Borderline Personality Disorder) in more general terms but have instead decided that I would explain how I feel, being open and honest about what it’s like to be me. This is how I experience living with my condition; in other words – me from the inside, out as the title says. Although I may appear tough and more often than not, smiling; I am in fact emotionally very fragile and often experience severe distress.

I am an exceptionally sensitive person – it is said that an individual with borderline personality disorder is akin to an individual with third-degree burns so that means that I can feel the equivalent severity of pain, not physically but emotionally. I feel everything at a very much more intense level than most people. I get emotionally hurt, extremely quickly and the ensuing distress is almost intolerable at times. I’m not terribly good at handling it although at least I don’t replace my pain with self-harming tactics anymore. Self-harming, as you may have read elsewhere, is an attempt to distract myself from the huge amount of emotional pain I am in.

On the other hand, I also have a tremendous capacity for huge amounts of love and joy and compassion to share with the world and those around me and that is something I make the most of and feel as strongly about as I do the agony.

I am also what is sometimes known as a quiet borderline, meaning that (contrary to popular belief), I rarely have fits of rage although of course, I have anger like everyone else. I have never wanted to be the centre of attention – in fact, I wouldn’t be even remotely interested in being the life and soul of the party – I can’t think of anything I’d like less of on the social scale. Give me a cosy corner, a book and a blog to write and that’s more my idea of amusing myself although of course I enjoy the company of a few good friends to share coffee or a meal with. Neither, do I like to draw attention to my inadequacies in a public way.

As those of you who know me well will recognise, I am frequently apologetic or forever saying sorry for who I am or for what I have written. (My self-esteem isn’t the greatest because of my experiences of severe childhood trauma), and I’m often being ‘told off‘ for putting myself down which I find only too easy. I rarely feel ‘good‘ enough and will often need your reassurance and approval to make me feel ‘ok‘ or ‘acceptable,’ even when I think that I might just be alright. This probably explains why I often go to bed at night or wake up in the morning worrying whether anyone has read/liked/hated/ignored or commented on my blog, or why I have endlessly fretted about what my WordPress ‘stats’ are doing. This isn’t as pathetic as it may at first sound – it stems from a chronic fear of being rejected or abandoned which is classic in BPD.

I’m sorry if this sounds like a plea for more attention to my blog, (it definitely isn’t), which I feel is mediocre at best compared to most blogs I read. I feel inadequate and not good enough most of the time despite reassurances, and this isn’t particularly a nice place to be. Please, don’t believe, for one minute, that this is ‘attention-seeking‘ behaviour. I hate that phrase – it makes me feel like a spoilt child who is having a temper tantrum and stomping my feet because I can’t get my way.

I ‘mind read‘ a lot, attempting to guess what people are thinking of me because I always feel people are thinking the worse of me. I worry about what you might be thinking of me despite your reassurances. I cannot help it. It is the way my brain is wired as also goes for all my other BPD traits. I don’t choose to be this way. My physical disability is far the less debilitating than my emotional tolerances.

Impulsivity is a ‘biggy’ in my life. It gets me into endless amounts of trouble and is the thing I find most difficult to control. It can vary from something obvious like spending money I haven’t got (usually on Amazon) to saying yes or no to a demand before I’ve thought it through properly. I then worry that if I back-track, changing my mind, I am not going to be ‘liked’ very much which ties in with the fear of rejection or abandonment, as mentioned above. I have also been known to get into trouble, (usually by the poor, embarrassed friend I happen to be with) for suddenly doing something entirely unexpected, like hugging that kind lady on the bus (or the waiter in a restaurant) because they were kind and I feel honoured because I don’t feel worthy of their kindness or praise.

I have to say that I am also prone to quite sudden mood changes (and I don’t mean Jekyll & Hyde style). I can be feeling as happy as a pig in clover one minute to being so low that I am down in the depths of the basement the next, often without any apparent cause.  I can assure you, it is just as confusing for me as it is for you, especially when everything can be reversed and or is interchangeable within minutes and I swing from one mood to another so intensely and so quickly.

I found this great YouTube video that is very different to all the others that I have seen about BPD that make me sound like some odd species or alien. It shows some of the most interesting points of living with this condition. As with everything, there are ups, and there are downs. Please take the time to watch it …

However, I have come a long way in my recovery, which is an ongoing process. I count myself as very blessed when I think of how ill I once was and the fact that I took so many chances, gambling with my life with drugs and alcohol, self-harm, and numerous severe overdoses. I’ve not had a drink for nearly four years and I’ve not self-harmed in any way other than bingeing on food occasionally, for four-and-a-half months.

I now lead a very active and busy life despite my disabilities, with college, art, drama, University speaking, coffee with friends,  and getting out into town and church with Charlie (that’s my electric wheelchair, not my ballroom dancing partner for those of you who have not met me before)!

My next goal is to take a ‘do-it-yourself’ certificate in something called DBT (Dialectical Behaviour Therapy) which is a very effective method of learning to live and cope successfully with BPD. It’s usually studied, and practised in groups under the Health Authority but this has been axed because of government funding cuts. Once I’ve done that (although that is something I’ll need to practice for the rest of my life), I’d like to move on to do my Public Health degree at my local university.

So, when all is said and done, I fight a good battle against one of the most difficult to cope with mental health conditions that many psychiatrists don’t like dealing with because it can’t be treated or controlled by drugs. Yes, I still take medication, but that’s more about dealing with the often accompanying symptoms of anxiety, panic, depression, etc.

I know and am grateful that I get a lot of support from some of my family and friends, both real-life and cyber friends, from my mental health team, my GP, college and university. I do indeed, count myself as extremely blessed and very fortunate. Thank you to you, for your support and your time and patience in reading this far in what I am aware is probably one of my longest posts. I truly appreciate it. Ellie x ❤

‘THE BORDERLINE’ AND FACEBOOK

sometimes when i say i'm okay

BPD and Facebook! Not a good combination when I’m feeling vulnerable. I’d posted the above image on a mental health support page and 51 people ‘liked’ it but not one truly got the message – that I really wasn’t ok and was in need of a hug, all be it virtual. One ‘friend’ cut me off altogether. Such is the capricious nature of Facebook. But, when I’m feeling low, the last thing I need is what to me feels like a ‘kick in the teeth’.

BPD (Borderline Personality Disorder); sometimes referred to as EUPD (Emotionally Unstable Personality Disorder) is now being referred to by my local mental health team as EID which stands for Emotional Intensity Disorder because people such as myself, feel their emotions far more deeply than the majority of the population. I speak for myself, of course.

The first paragraph, above, is just an example of how easily I get affected and upset. That meaningless, minor event has been enough to send me from feeling happy and content with my world to now, feeling alone, hurt and totally rejected, and although I know I get things ‘all out of proportion’, as some would say, I feel it … I really feel it, and it hurts. It hurts, just like if someone had punched me in the back. Emotional pain is just as great as physical pain. In fact, speaking as someone who has a great deal of both, I would say that emotional pain is harder for me to bear than physical pain.

TWO DAYS LATER – I’ve been watching some YouTube videos on all sorts of topics today including mental health issues. One or two videos were quite helpful. However, I saw one that made me angry. I don’t mean the type of ‘raging anger’ that is meant to be ‘typical’ of all people with BPD but isn’t necessarily so. I mean very justifiable anger, I think … you tell me ….

Why? Because one particular five-minute video continually referred to me and other folk with BPD as ‘The Borderline‘, as if I were an object of curiosity in a museum. If we all took that attitude, then would we call other people with illnesses such as pneumonia or cancer by their diagnosis, i.e. how is ‘The Pneumonia‘ today, or, have you spoken to ‘The Cancer‘ this morning? I think not. Am I being unreasonable in asking to be spoken of respectfully, and not just seen as my diagnosis, but, as a warm, thoughtful and reasonably intelligent human being that I try to be to the best of my ability?

man in box

Image courtesy of ibtimes.com

Well … back to where I started – Facebook (friend or foe?). It has its problems; there’s no doubt about that – it certainly gets a mixed review from me. I have made ‘friends’, but I have also lost a few. I’ve read some good articles and posts, and some dreadful, misinformative posts too. I’ve joined and left a few groups over the time I’ve been with FB (far too long, I’m beginning to think). It can bring people together but it probably also causes more wars between them too. I’ve deleted and deactivated my account more times than I can remember and for various reasons but I’m always sucked back into its vices after a few weeks (fickle by name, fickle by nature). 

Social media, in general, has a hell of a lot to answer for; not just Facebook, but also, Twitter, LinkedIn, Google Plus+, Instagram, YouTube, Tumblr etc (I have to say I’m not with many of them, though). What about WordPress here, and Blogger etc – do you consider them to be social media in some way too? After all, we have followers that stay, followers that go. Some participate – some sit in the back row and watch – however, both are fine with me. I write because I enjoy it – sometimes I make sense; other times, not so. I have made sense in the past, though – I have written two books a good while ago, both more serious poetry (some of which I’ve shared over the years). Finally, I’ve also been known to rant. However, just now, I think I am mortal danger of beginning to ramble so here I will stop and bid you adieu 🙂 

GUNNING FOR A FIGHT

gun to head

This is just an immature little ditty that was all that I could muster tonight, having wanted and needed to come up with something a bit more intelligent to express my feelings. I failed abysmally. My BPD and my mental health are totally unpredictable just lately. I hate it when it’s like that because I’ve just had another  of those days where I just want to take a gun to my head …

Is everyone alright
if I give up the fight
just ‘cos I’m tired
of hurting tonight

I’m just having a ball
when I’m playing the fool
whilst I laugh through the pain
Look! I’m good at it all

So, you think it’s not true
that I’m feeling so blue
I’ll try and convince you
but I’m kidding me too

And it’s really not fine
that I don’t feel divine
just being ignored
by supposedly mine

I am knotted inside
and the tears have I cried
would fill up an ocean
a thousand miles wide

I wish I were sleeping
but to Hades, I’m creeping
I know I am destined
It’s a secret I’m keeping

So I hope it’s alright
if I give up the fight
just ‘cos I’m tired
of fighting tonight.

SURVIVING THE STORM

storm waves crashing

My previous post spoke of how it feels to lose someone or many people, close to you; how the waves of grief come crashing down on you. It is talking about death in these instances. But what if the person you are grieving for is still alive but just out of your reach. This is also excruciatingly painful.

When the person is still alive but not in your life any longer, the pain and heartache are also almost unbearable as the waves still come crashing down on you time after time. These tidal surges continue as if they are beating against a ship, wrecked out at sea.

[In advance, I apologize for the length of this post. I wrote it for me. I wrote it because I needed to. I’ve needed to for a long, long time. Even if it is not read by anyone else, that does not matter. This is me … Ellie.]

I was talking to my therapist this morning. We spoke of my late night, yesterday. I was sitting, staring at my computer screen for hours, trawling the internet. I was searching for details of my previous therapist, *K, who I now, (after some years), recognize was emotionally and psychologically abusive to the point that I was totally in love with her, hung on her every word and believed each sentence she spoke. I was desperately searching for her name, her address, her photo, anything; a memory of this woman that I loved so much.

I travelled a round trip of two hours (at a cost to me to the point I was seriously in debt), on three mornings a week for eight years, to be with her. I was so emotionally dependent on her; I could barely breathe without her approval. All those years … all those wasted, damaging, life-threatening years. I don’t use the term ‘life-threatening’ lightly or as a casual, throwaway remark but because on one occasion when she was presumably cross with me for some reason I cannot remember, she actually said ‘Why you don’t go home and kill yourself’ and I tell the God’s honest truth here.

I attempted to take my life. I say cross as opposed to angry because the roles we took were of she, the strict, authoritarian parent, and I, the obedient child. She encouraged and nurtured this to the point where I loved and depended on her more than I did my own mother. There were hugs, kisses, gifts, cards etc. Every time she didn’t reply to a text or answer the phone (all of which were smashing the boundaries leaving nothing but a ship wrecked at sea), I punished my body in a self-destructive way because I assumed she didn’t ‘love’ me anymore and therefore, I envisaged that I had done something wrong; I had been the disobedient child. I actually took a blade to my skin, a bottle to my lips and dozens of pills to my throat on many an occasion.

It ended suddenly. It ended on the day of my father’s death when she questioned me as to why I was so upset and wasn’t I happy on this day, bearing in mind he had seriously abused me for all of my childhood? Nevertheless, he was still my father and somewhere amongst the hate, the terror, the disgust and the shame, he was still the only father I had and yes, I was upset that my father had died. In disgust and frustration, (because she had been insisting I relive the sexual abuse that took place all those years), she walked out on me and never came back. As well as losing my father that day, I lost my therapist, my guide, my mother, my friend and ally, my everything. I was devastated. I wanted to die along with the loss of her. I attempted this and woke, days later, in intensive care, but I survived and recovered slowly, at least physically but never, emotionally or psychologically.

Despite all this, four years later, I still miss her, pine for her affection, long to see her again. I love her. I hate her. I miss her, with those waves crashing down on me so often that I feel I will perish like a ship at sea. The pain of losing her is sometimes unbearable and I don’t want to be living and breathing on this Earth at those times.

shipwreck2

But … I am here. Despite everything, I am still here. Somehow, my time was not up yet. And although those waves still frequently come crashing in around my ears, I survive them, all be it bruised and battered emotionally. I recognize her for the controlling, sick, manipulative woman that she was and I hate her for what she did to me.

I love her. I miss her, I want to remember her face which has strangely faded from my memory. I search for her. I need her. I want her back … but do I? Do I, really? Do I want my life smashed against the side of the shipwrecked vessel, time and time again till I am worn away and engulfed by the sea?

NO! I don’t. Not anymore. I have come too far. I do not wish to turn back as often as I’m tempted to. I deserve better. I am stronger than that. I am here. I am me and will remain so until my true time comes. I am a survivor.

 

 

 

 

 

 

 

 

SHIPWRECKED

I am posting this copy of G.Snow’s moving advice for a reason that will become self-evident in my following post. Please take the time to read them both. It means a lot to me. Thank you x

The beautiful piece of writing was done by a commenter, four years ago in response to a poster asking for advice on grief.

The original post simply read: “My friend just died. I don’t know what to do.”

Here was Reddit’s, GSnow’s moving advice:

Alright, here goes. I’m old. What that means is that I’ve survived (so far) and a lot of people I’ve known and loved did not. I’ve lost friends, best friends, acquaintances, co-workers, grandparents, mom, relatives, teachers, mentors, students, neighbors, and a host of other folks. I have no children, and I can’t imagine the pain it must be to lose a child. But here’s my two cents.
I wish I could say you get used to people dying. I never did. I don’t want to. It tears a hole through me whenever somebody I love dies, no matter the circumstances. But I don’t want it to “not matter”. I don’t want it to be something that just passes. My scars are a testament to the love and the relationship that I had for and with that person. And if the scar is deep, so was the love. So be it. Scars are a testament to life. Scars are a testament that I can love deeply and live deeply and be cut, or even gouged, and that I can heal and continue to live and continue to love. And the scar tissue is stronger than the original flesh ever was. Scars are a testament to life. Scars are only ugly to people who can’t see.
As for grief, you’ll find it comes in waves. When the ship is first wrecked, you’re drowning, with wreckage all around you. Everything floating around you reminds you of the beauty and the magnificence of the ship that was, and is no more. And all you can do is float. You find some piece of the wreckage, and you hang on for a while. Maybe it’s some physical thing. Maybe it’s a happy memory or a photograph. Maybe it’s a person who is also floating. For a while, all you can do is float. Stay alive.
In the beginning, the waves are 100 feet tall and crash over you without mercy. They come 10 seconds apart and don’t even give you time to catch your breath. All you can do is hang on and float. After a while, maybe weeks, maybe months, you’ll find the waves are still 100 feet tall, but they come further apart. When they come, they still crash all over you and wipe you out. But in between, you can breathe, you can function. You never know what’s going to trigger the grief. It might be a song, a picture, a street intersection, the smell of a cup of coffee. It can be just about anything…and the wave comes crashing. But in between waves, there is life.
Somewhere down the line, and it’s different for everybody, you find that the waves are only 80 feet tall. Or 50 feet tall. And while they still come, they come further apart. You can see them coming. An anniversary, a birthday, or Christmas, or landing at O’Hare. You can see it coming, for the most part, and prepare yourself. And when it washes over you, you know that somehow you will, again, come out the other side. Soaking wet, sputtering, still hanging on to some tiny piece of the wreckage, but you’ll come out.
Take it from an old guy. The waves never stop coming, and somehow you don’t really want them to. But you learn that you’ll survive them. And other waves will come. And you’ll survive them too. If you’re lucky, you’ll have lots of scars from lots of loves. And lots of shipwrecks.