Category Archives: Mental Health

Mental Health, Suffering & Grief

“A Crushed Spirit” – Finding a Way Through Dark Times

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“The human spirit can endure in sickness, but a crushed spirit who can bear?” ‭‭

Proverbs‬ ‭18:14‬ ‭


A few months ago I re-read this Proverb and it again spoke to my heart. Afterwards I felt a deep sense that I should make a series of videos about it. Because for me these simple words tell a profound story about sickness & suffering. They also give insight into some of my own story about the reality of enduring long term sickness.

The proverb explains that the human spirit can endure a lot of things. Throughout history, many many people have had to endure long seasons of deep suffering. In fact, things probably used to be much worse. There were less medicines, less diagnosis, less surgery, less wider help & support. So people have always – throughout history – had to endure suffering, pain, and sickness. Sometimes for their whole lives. So we know that the human spirit has shown, again and again, that it can endure a lot.

HOWEVER the proverb goes on to contrast that “a crushed spirit who can bear?”. Meaning that although humans can endure a lot – there is another state of suffering of the human spirit that can feel impossible to bear.

That is why I wanted to make these videos. To discuss what it feels like and how to endure and find a way through the seasons when our spirits feel crushed.

Another translation of this proverb says:

“A cheerful spirit gives strength even during sickness. But you can’t keep going if you have a broken spirit.””‭‭

Proverbs‬ ‭18:14‬ ‭NIRV‬‬

So here we have another meaning for crushed, which is the word broken. The same Hebrew word is also sometimes translated wounded. Basically, this tells us that a season of a ‘crushed spirit’ is characterised by feelings of:

BROKENNESS – WOUNDEDNESS – INNER PAIN – DESPAIR

If you have ever experienced a season like this, you will know exactly what I’m talking about. For some people it may be characterised as depression or extreme anxiety. For others it may well lead them into a time of suicidal ideation/ thoughts of wanting to leave – or escape – this world & all of its pain.

It is certainly a season that is very very difficult to bear and endure.

I have been there myself. I have tasted of the darkness of a season of a crushed & broken spirit. Some might call it ‘the dark night of the soul’. It’s a time when everything feels so dark and oppressive and it’s so difficult to see any light, any joy or to see a way forward. You feel stuck or lost in such a season. It can also be extremely dangerous, especially if someone is actually also feeling suicidal because there seems ‘no way out.’

This is why I made these videos and why I am writing this blog post to introduce the series. I hope that it reaches out to people who currently feel immensely lost, dark and crushed. My prayer is that it helps to bring some hope again – even if just a flicker of a flame. So that you can find a way through. I believe you can find a way through – because I did. Despite not being able to see it at the time.

In this article, I want to introduce you to a summary of each video and the main points in each one. You will discover, as I tried to explain many times, that this content has been inspired by what I have learnt on my own journey since I first started out on my journey of long-term illness (spinal CSF leak & arachnoiditis) in January 2015. Over those six years I have been through at least three intense seasons of ‘a crushed spirit’ as I write about in Breaking Through the Darkness and A Window into a Suicidal Mind.

So these are some of the ways that I have found a way through & discovered a new way of living despite the deep ongoing challenges of living with these conditions & managing them on a daily basis.

VIDEO 1 : ACKNOWLEDGMENT & VALIDATION.

In this video I talk about the importance of being honest, opening up & talking to someone about the truth of your struggles. In my experience it is vitally important to get what is locked in the darkness of your mind out into the open. When it stays stuck on the inside the chaos takes over and the mind quickly snowballs out of control. Getting our thoughts and words out of whirring around our heads can help us to bring more order to our thoughts, help us process and understand ourselves and others better.

It then helps if you can speak to someone who will validate your struggles and help support you through them.

VIDEO 2: ACCEPTANCE & LETTING GO

In this video I talk about my next step in finding more serenity: peace & calmness. That is leaning to ‘accept the things I cannot change’ but also courageously ‘changing what I can.’ This can often include going through painful season of grieving & letting go of who you once were or your dreams for the future. I also talk about learning to live more in the present. Which doesn’t mean we don’t face, process and find healing from yesterday’s trauma. But simply means that we choose not to get stuck there. I also talk about having hope for the future whilst not getting lost in its never ending what if’s.

VIDEO 3: CALMING THE MIND

I start off by honestly talking about my experiences of my mind feeling totally out of control. I remind us that we may sometimes need professional help from doctors etc before we can move out of such an intense season. I then go on to share about these main points:

  1. Getting what you are thinking out in the open. A mind where thoughts get trapped can quickly turn very dark. It’s important to share how we are feeling honestly with others.
  2. Protecting your mind – being careful with what you read/ watch/ listen to/ who to talk to. Guard what you feed your mind with.
  3. Thought replacement (not denial) filling your mind with better thoughts. For me this includes bombarding/ renewing the mind: Listening to and reading things that encourage and inspire you. Love was also something I would try and focus on and was a real anchor for me.
  4. Gratitude: Focusing on what I do have rather than on what I don’t.

VIDEO 4: FINDING NEW PURPOSE – Purpose in Pain

“As my sufferings mounted I soon realized that there were two ways in which I could respond to my situation — either to react with bitterness or seek to transform the suffering into a creative force. I decided to follow the latter course.”

Martin Luther King, Jr
  1. Transform suffering into a creative force for good. Our own experiences put us in the privileged position of being able to feel more empathy & connection. It also puts us in a more experienced place to provide advocacy & fight for justice for others (as well as ourselves). This can include educating others about these illnesses & raising awareness about these conditions.
  2. I am not what I do: Establishing a new identity. This will include the grieving of letting go of who we once were so that we can learn to discover new purpose and achievement in the small things. I wrote a whole blog article about this a couple of years ago titled: What is my Purpose: Do Small Things with Great Love. In it I wrote about how I was inspired by God to find purpose by daily asking the question: “Who can I show love to today?”
  3. Discovering a new way of living – Finding what we can do despite all of our restrictions. This can include doing small loving things. It could include spending time with others at home, calling them, writing or sending a message. We can often find more purpose in thinking about others rather than just being consumed by ourselves.
  4. Bearing suffering as a source of achievement & setting an example to others. I read Viktor Frankl’s ‘Man’s Search for Meaning,’ a few years ago about how he and others endured the desperate suffering of the concentration camp by discovering a higher purpose.

“…the way they bore their suffering was a genuine inner achievement. It is this spiritual freedom— which cannot be taken away—that makes life meaningful and purposeful.”

Victor Frankl

This can also include a realisation that us finding a way through can be so significant for those coming behind us on these journeys. Some of those people could actually be your own children, your family or friends in the future.

My prayer for you is that these videos provide some inspiration to help you endure – and hopefully find a way through – your own season of ‘a crushed spirit’. Or perhaps instead they might help to educate you to learn how better to support loved ones who are going through immensely difficult seasons of suffering in many different ways.

We all at times need others to help us come through these darker & more desolate seasons. I truly believe that we are not meant to face these things alone.

“Two people are better off than one, for they can help each other succeed. If one person falls, the other can reach out and help. But someone who falls alone is in real trouble.”

Ecclesiastes‬ ‭4:9-10‬ ‭

So most of all today I want you to know that you are not alone. I have been there myself and it was the hardest and most painful thing I have ever had to face and come through. But I can tell you:

THINGS CAN GET BETTER AGAIN!

So never give up hope – clutch onto it, even if only by your fingernails – and do what you have to to make sure you can stay holding on. Because I do believe one day you will look back and be glad that you did. And maybe – just maybe – your own story of overcoming can then be a guiding light to others. To help them find their own pathway out of that crushing, broken & wounded place. Into the calmer & greener pastures of more holistic wholeness & deeper rest for your soul. Despite your challenging circumstances.

“O Lord… You know me more deeply and fully than I know myself.  You love me with a greater love than I can love myself. You even offer me more than I can desire… Take my tired body, my confused mind, and my restless soul into your arms and give me rest, simple quiet rest.”

Henri Nouwen

To understand more about my medical case & story please see my new summary video of my whole medical journey please see this video.

Identity, Mental Health, Perspective

What is My Purpose? Do Small things with Great Love

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“Do ordinary things with extraordinary love.”

Mother Teresa

A few months ago, I was again immersed in the intense and dark storm of a traumatic spinal CSF leak symptom relapse – which also triggered the major mental health crisis I wrote about here. Part of my turmoil included the sense of feeling completely worthless.

Being perpetually stuck in bed with very distressing neurological symptoms often means you feel like your life has so little worth, value or purpose. Especially when you see most other people around you getting on with their seemingly important, full and valuable lives.

Feeling ‘purposeless’ amidst suffering and chronic pain really negatively impacts your mental health. Because when you feel like your life has no purpose, you simply feel burdensome to those having to care for you, and to the world in general.

In that crushing darkness I was immersed in, I just couldn’t see how my life could bless and help others. I just felt like I was, and would always be, a negative influence and drain on others. I even felt like deleting this whole blog, and my all of my public writing, because I decided that stories without happy endings are just depressing. If I cannot offer hope to those suffering then my writing may just discourage those already unwell and spread negativity rather than positivity. I thought to myself: what’s the point of me telling my sad story when the world is just full of sad stories?

In the end, I compromised and managed to just privatise this blog for a few weeks – until my perspective began to get a bit more healthy and balanced again.

However, as time went on – and the sun slowly began to break through the dark clouds – I realised that my mind had again got lost in the LIE often peddled in this world that ….

What you DO is far more important than who you ARE!

The lie that subtly tells us each day that if I can’t actually DO anything then my life is surely worthless?! I am just a chronically (and at times mentally ill) ‘insignificant nobody’ who is struggling to find the energy to live and breath, let alone have the energy or capacity to make a difference in the lives of my immediate loved ones – or the world in general.

“Experience is not what happens to you. It is what you do with what happens to you. Don’t waste your pain; use it to help others.”

Rick Warren, The Purpose Driven Life

Why do we so often fall for that ageless deception – that we only truly ARE what we DO?!

“What do you do?” everyone asks you when you first meet. “What do you do?” the doctors ask when they first see you – as if knowing such things means that they can now interpret your ‘medical story’ through the bias of what title the world has given you.

Those few ‘what do you do’ words often unknowingly heap shame on those of us in Western society now unable to DO as we used to.

The fact that we don’t, or can no longer, wear societies ‘badges of honour’ (its job and career titles) – perhaps because of immensely difficult seasons of debilitating illness or disability or other challenging seasons in our life – suddenly means that we become insignificant second rate citizens of the world.

When I get lost in such lies, it cripples me. Shame consumes me. I lose track of my identity. I feel completely lost and not sure where to anchor myself so as to move forward.

But as my perspective begins to improve one of the first things I begin to SEE is that I have again got deceived into believing a lie.

Slowly I can SEE again that I instead need to connect with the deeper truth of this universe, that is…

I am not what I DO!

I am still Becky Hill – whether I can be busy DOing a certain job or task, or if I can only lie in bed and look for ways to find purpose in the midst of all my pain and restrictions.

It was at that time and in that place of deep wrestling that one day I was sharing what I like to describe as a ‘Psalms type prayer of lament’ to God. I was crying out to Him, overwhelmed by the feeling that I didn’t have a purpose anymore. I was just so restricted by my physical condition that I was questioning what the point of me being alive was. If my life is simply about existing and enduring the pain, then is it really worth living??

And in that moment I felt God reply to me so clearly through the peaceful gentle whisper of His Spirit to mine…

“Precious child – your purpose is to daily ask yourself, “who can I show LOVE to today?”

It immediately EXPLODED in my heart!

It was so simple – yet the revelation so profound…

God wanted me to get the focus off of me and ask Him for creative ideas to show love to others – DESPITE my pain and limitations. He was telling me that even though, at that point, I was stuck in bed most of the day … I could still choose to love others from that place.

Those words from God that day resonated with and reminded me more deeply of the truth I already knew and lived by – that LOVE is only love when it is given and offered sacrificially. In the same way Jesus gave His life to love mankind by dying for our brokenness, we also need to be inspired by his example – by daily looking for ways to love others sacrificially too.

However, the key thing God continued to show me in that moment which has powerfully stayed with me ever since… is that the acts of love didn’t have to be BIG things. I just had to love as much as I could through the small things I could do. It was at this point the sign in the photo that we have hanging in our hall became a deeper revelation which has become my fundamental purpose for living…

DO SMALL THINGS WITH GREAT LOVE!

It’s so very simple and yet so deeply profound.

DO ORDINARY THINGS WITH EXTRAORDINARY LOVE!

It doesn’t matter how small or how ordinary what you have to offer is.

What matters is the amount of love you offer it with.

So …

It doesn’t actually really matter how BIG or extraordinary your job title is! What matters is how much love you do all the small and ordinary things in that job and the rest of your life with.

In that way the standard is equalised for all.

Our purpose is always the same.

No one has a more significant purpose than others.

So if today I can only hang some washing on the line, send a couple of empathetic messages to other people struggling and order some shopping for my family online – I can do it all with as much love as I can. I can serve others with a sacrificial heart. Which means the pain invested in the small things causes the love shown to be even greater.

So those words “who can I show love to today” have become the habitual daily question of my heart. Those few words – “do small things with great love” – have helped me immensely in walking through what seemed like an impossible time I couldn’t endure.

When I would wake up in the morning on those days and the dark reality of the struggle ahead would hit me like a ton of bricks, I would try to accept where I was – grieve my limitations – and then change my focus to ask God – ‘please show me who I can love with small acts of love and kindness today.’ In that place I tried to be mindful of others who were finding life challenging and think of how I could encourage them. I would look for very small jobs that I could do at home and try and pour my love for my family out through them. If I was shopping online – or later could go to the shops – I would try and think of who I could buy a special gift or card for.

And slowly…but surely…that sense of PURPOSE – EVEN AMIDST PAIN – was restored to me.

Because I again discovered that being alive meant that someone else could be loved, served, encouraged and blessed today.

It took the focus off me and my problems…

And shifted my gaze and contemplation onto His sacrificial LOVE flowing through me.

And the more I loved.

The more I felt His love.

So the more love I then had to give.

“The greatest thing about helping other people is for the moment you forget about yourself.”

Matthew Barnett

I again discovered that the giving and receiving of true love is probably one of the best medicines to help sooth the pain. It is certainly the highest and most significant calling of our lives.

So today I decided to share my story with you again – to tell you with great love to never forget…

That despite your chronic pain, despite all of the debilitation, despite your current disabilities and limitations, despite all of the restrictions you seem to be facing…

There is still a much greater purpose for you.

Please don’t lose sight of that like I did. The truth is – there is still so much to live for. There are things that only you can do. There are words and tasks that only you will be able to see need doing, or saying, that may be able to connect with and encourage someone else really struggling.

So choose to love daily.

Choose love as the highest purpose of your life.

And whoever you are – whatever worldly title you do or don’t have – whether you feel important or insignificant – try to simply do…

Small things with great love.

That way, the world will shine a little bit brighter because you are still in it. Which is so important to both us, and others, who seem to be constantly stuck in a cycle of – at times – overwhelming darkness, brokenness and pain.

As I write these words today and try to infuse them with as much love as I can, I hope that you will today truly SEE how extraordinary you can be – IF you will just do and say ordinary things with extraordinary love.

Whilst knowing how much greater that love is – when it is given with the deep sacrifice of your ongoing pain.

“I was broken so that I may understand the broken, so that I may reach out to the hurting, and comfort the wounded. I have the capacity to bring hope and love and healing. A once fractured mirror finding new purpose, because I am no longer reflecting myself, I’m reflecting Him. This is my reason for living. This is why I was created.”

Sam Re

To read more about my recent mental health crisis please try this post; A Window into a Suicidal Mind  To read more about my beginning to understand how crippling shame had become in my life please see; ‘The Shame of Chronic Illness and Pain.’ For an article on a similar theme to this one please try: Is Busyness a Choice?

For more posts about my story of living with a spinal CSF Leak please look at the subject heading on the menu bar above.

For more information about spinal CSF leaks please see the UK charity website at www.csfleak.info or the US charity website at www.spinalcsfleak.org.

Mental Health, Perspective

A Window into a Suicidal Mind

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“I remember the wild agony of no way out and how the stars looked, endless and forever, and your mind can feel like it’s burning up at all the edges and there’s never going to be any way to stop the flame.”

Ann Voskamp

Only those who have experienced the trauma of a suicidal mind can truly understand how agonisingly dangerous it is.

We usually do the upmost in our lives to avoid things that might kill or harm us. But when it is your mind trying to kill and harm itself – it can feel impossible to get away from. It takes you hostage, binding you up with all its lies and accusations, torturing you inside your own head, home and life.

Refusing to let you go.

If only I could explain to you what it feels like…

I recently read the beautiful article on suicide that the above quote is from. And straight away I connected with the author whom I instantly knew understood.

You see I never used to understand.

I used to assume that I would never think that way. That life couldn’t get that bad for me. That I couldn’t be that selfish. I assumed that my ‘superior’ coping mechanisms could surely carry me through any storm that came my way.

Until life took me through seasons when I truly felt …. “the wild agony of no way out…”

At the end of April this year I dramatically relapsed in my spinal CSF leak and arachnoiditis symptoms…AGAIN!! After eighteen months of clear improvement since my last epidural blood patch. Everything came crashing down again physically and mentally.

And I found I had absolutely NOTHING left to fight with.

I had completely burnt myself out physically, mentally, emotionally and spiritually from fighting this horrible condition and all the misunderstanding’s surrounding it – for so long.

I ended up stuck in bed nearly all – day and night – in almost perpetual intense, agonising pain. Everything simply exploded symptom wise and it felt like I was getting every type of headache and nerve pain in my spine you can get on top of the ‘low pressure’ issues. It was non-stop, non-positional pain, and made worse by the fact I was hardly sleeping at all.

I am only now beginning to feel more ready to talk about what happened back then more openly. Rather than just wanting to hide from the world and not speak up.

It’s only crippling shame that tries to keep me silent.

But as I get increasingly well, I know that part of my healing and restoration comes in being able to talk more openly about how bad things were. I know that the only way to deal with shame is to speak it out. So as to process my own journey and also to connect with others’ suffering and struggling, as well as to help others to understand more.

So here’s some more of the brutal and raw truth about the traumatic wrestlings of a suicidal mind. At the time, I wrote some poetry in my iPhone notes. I guess to try and process my thoughts and explain to others how it felt. I did show these to my husband at the time which he appreciated – even though they were often painful for him to read.

This Pain in My Head

I am going mad
This pain in my head
Persists and won’t go away
It’s killing me slowly
Polluting my life
Stealing everything away

What do you do When you are Drowning?

I am drowning – can you see?
My head keeps sinking below the surface.
My legs furiously attempting to keep my head above the waves.
I have no strength left to fight.
My legs are growing so tired.
My mind just won’t stop whirring.
The pain won’t let me go.

I am suffocating – can’t you see?
Where life is being squeezed out of me.
My energy leaving me, my endurance gone.
My life just a shadow of what it once was.

I am in inner & outer torment – can you see?
The pain and debilitation slowly taking over all I am.
Like gangrene it eats away at me.
Stealing my life, my strength, my hope

I love you all so much – can you see?
I am devastated by just what may be.
To think of your tears, your cries, your heartbreak and pain.
To think of destruction eating away at your hearts.
To think of the backlash and the battle.
To think of all the awful desolation left behind.

How could I?
How can I?

What am I supposed to do?
Do I keep existing or allow the waves to take me where they will.

So the battle rages and I sink yet deeper still into the darkness.
The pit of despair – a place that won’t let you go.
Destruction all around me.
Devastation following.
Despair keeps on calling my name.

I am stuck in the pain and anguish of living here.
Trying to love here…
Trying to suffer well…
Trying to hold on…
Trying to clutch on to life…
Trying to not let go…

But losing…
I am losing…
I am losing…

I don’t want to be lost
But devastation is calling my name.

The Torment of Pain

Pain torments you it pulls, pushes & wrestles with your mind
Persistent pain consumes you until nothing else is left
It eats you alive leaving your flesh exposed
Infection after infection ravages your thinking
Mind constantly infected
Tormented
Trying to hold on
Trying
Trying
Trying to hold on
Gasping
Reaching
Clutching
By my finger nails
Trying to hold on

How Long am I Supposed to Endure?

How long am I supposed to endure?
She asked, writhing around in pain
How long do I need to exist in this for
She asked, living as if death was life

They tried to understand
but still couldn’t see
the pain
that never went away.
The torture of not knowing how long to endure
Was stealing her whole life away

The problem was
she could no longer see
a future any better than this
She tried and she tried to hold on for love
But the pain was pulling her to defeat

Many would question the size of her love
The fact she could not endure or remain
But that is because they never lived in her body
And never kept on feeling her pain

Somehow reading them as separate poems doesn’t quite do justice to the intensity of the trauma that takes over your mind when you are backed into the ‘corner of dark shadows’ that is suicidal ideation.

Your mind is completely out of control.

You can no longer think rationally. It’s just a massive ball of dark, oppressive and negative thoughts crippling your perspective and adding to your intense internal and external agony.

I still felt so much love and love was actually my only anchor and light. But love was often even painful to feel, because you think that if you really loved others – that much – you should be able to endure and remain.

Right?

But you don’t have any energy to remain anymore.

It’s relentless.

Completely overwhelming.

All consuming.

Utterly unbearable.

And as dark as dark can be.

….And I was hardly sleeping at all. So there was no relief.

That’s why it’s called ‘mental illness’ – because you are extremely unwell.

And you just can’t ‘snap out of it’. Or just ‘think positive thoughts’. Or ‘reign in your thoughts’. Or simply ‘change your perspective’.

You no longer have that ability.

Your mind is no longer your own.

Without the love, compassion, support and care of my amazing husband, family, church family, friends and doctors, I am not sure I would have made it through.

It still scares me to know first hand what a vulnerable and dangerously over stretched mind can end up like.

But I do know talking openly about it shows how far I have come since then. To know that I was simply very very sick – both physically and mentally. It breaks my heart to know that others are facing this same battle – in similar and very different ways – each and every day.

Unless we can try to listen and understand more what goes on the the mind of someone feeling suicidal, we won’t be able to help them overcome the immense stigma, shame, misunderstandings and trauma of that experience. We need to know how to best try and help ourselves when we find ourselves there. As well as helping those stuck in the oppressive prison of a mind on the edge of suicide.

So that’s why I am opening up my own immensely humbling experience again. To let another struggling soul know today that you are not alone. I have been there and I want you to know…

It can get better again.

I know you can’t see it – yet.

I couldn’t either.

I only felt the ‘agony of no way out.’

But one day the sun did again begin to break through the clouds.
And I began to walk out.

Albeit bruised, battered, burned, startled and scared from the fight. But I made it through again. So please just keep putting one foot in front of the other.

Just hold on a little bit longer.

Allow someone else to walk through it with you.

And then get strong enough to share your story. Because it might help to reach and save another struggling soul too.

“I wanted the brave to speak up, to speak the Truth and Love:
Shame is a bully and Grace is a shield.  You are safe here.
To write it on walls and on arms and right across wounds:
“No Shame.
No Fear.
No Hiding.
Always safe for the suffering here...”
If we only knew what fire every person is facing — there isn’t one person we wouldn’t help fight their fire with the heat of a greater love.”

Ann Voskamp

To read more about my first mental health crisis please try this post; ‘Breaking Through the Darkness .’ To read more about my beginning to understand how crippling shame had become in my life please see; ‘The Shame of Chronic Illness and Pain.’

UPDATE: Please note that in August 2020 I was also diagnosed with arachnoiditis as well as a spinal CSF Leak – I now have radiological evidence to support both those diagnosis. To read more about the new diagnosis please see this link.

For more posts about my story of living with a spinal CSF Leak please look at the subject heading on the menu bar above.

Here is a brilliant 2 min animation about Spinal CSF leaks.

For more information about spinal CSF leaks please see the UK charity website at www.csfleak.info or the US charity website at www.spinalcsfleak.org.

Mental Health, Spinal CSF Leak

Breaking Through the Darkness

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Hope deferred makes the heart sick, but a dream fulfilled is a tree of life. – A Proverb‬*

Have you ever reached the end of yourself?
REALLY reached the end of yourself?
When you are depleted at every level:
Physically,
Mentally,
Spiritually,
And psychologically?

When despair sets in and a darkness envelops you that feels so strong it literally attempts to strangle any life and hope out of you?

My world came crashing down in the week running up to and over Christmas this year and I fell apart in a way I never would have thought I could or would.

You see – I am strong!
I don’t give in easily!
I have a very real and deep faith in God!
I have a healthy thought life!
I don’t do being ‘weak’ so well!

I had held on all year.

Through an immensely difficult year for our family, following a serious and unusual spinal injury (a CSF Leak) that left me with major neurological problems.

I had finally received more treatment (a second epidural blood patch) for debilitating Low Pressure Headaches caused by a suspected CSF leak, and I had to muster up all the strength I had left to be positive, overcome fear and give recovery its best go. As I wrote about in When All that Remains is Faith, Hope & Love.

I had to be strong enough. Somehow I would be strong enough. I wasn’t going to give anything else away to this horrible condition.

I wouldn’t let it take more of my life.

The problem is that sometimes life takes us to places that are quite simply beyond us. Things don’t work out how we thought they would.

We give it everything we’ve got.

And then we find we have nothing left to give.

We humbly discover that we too are one of ‘those’ people we perhaps used to look down upon.

‘Those people’ who can’t cope. ‘Those weak people‘ that can’t keep going when life gets tough.

We discover….

THAT IS ALSO ME.

And it blasts everything we once thought about ourselves out the window.

‘We’ become ‘them’.
The one battling a chronic illness.
The one who ‘broke down’ mentally.
The one who felt like escaping life was perhaps better than living it like this.

And a new journey starts.

After weeks of waiting and battling for treatment – a second epidural blood patch – everything was poised in my mind.

THIS HAD TO WORK!
I HAD TO BE WELL AGAIN!

Being a positive, faith-filled person I filled my mind with that hope. Surely after all the discussions, waiting, battles and disappointments – it would work – IT HAD TO!! Our family couldn’t go through the trauma and chaos of any more upheaval because of this horrible and unusual injury.

I finally had my blood patch and all appeared to go well – although it certainly wasn’t an instant ‘fix it all.’ So I did what I always try to do – focus on the positive, believe, step out in faith and trust that as I regained my physical strength and conditioning that I would find complete health.

I did all that I could to push through various lingering, unpleasant symptoms. Stay positive and keep going. The problem was my body and mind was exhausted and as I pushed it more and more, it began to shut down. I survived for a time on shear willpower and adrenaline but 3 weeks after my blood patch I developed acute insomnia.

I would go to bed exhausted, sleep for 30 – 60 mins, then be awake all night …..every night…. for two weeks.

No ones body can survive like that whilst also battling a major neurological condition.

But I tried to keep on going, I thought ‘if I just keep going then I will get tired enough to sleep’. Then my conditioning will get back to normal.

I just wanted to be well for Christmas to leave this difficult year behind in 2015.

Things spiraled out of control physically and mentally – my symptoms seemed all over the place – before crashing in every way.

It was Christmas.

Usually a fun-filled family time of sharing gifts and eating together.

Christmas 2015 is a blur to me. I cried my way through it, in all honesty, exhausted, depleted in every way and not even wanting to live anymore – if living meant this.

I felt so very unwell and the relief that lying flat used to provide was not alway’s there. Which is why I couldn’t sleep. It was torture. My body and mind were utterly exhausted. I didn’t know what was going on.

I assumed that the blood patch had eventually failed and because of all the battles to get it I was not sure I could access another one.

I could no longer think straight.
I could no longer see a way forward.
I lost my perspective.

I naively and ridiculously found myself ‘wishing’ that what I had was terminal – because at least there would be an end in sight, if it was. At least there would be an escape from the inner and outer pain that I felt.

PAIN CONSUMED ME.

I felt stuck between an inner pain, grief, physical pain and such exhaustion that death seemed the only way out. Yet I knew to choose death would devastate those I would leave behind. Which added to my pain.

Breaking through the darkness copy

Darkness enveloped me and pain became my reality.
Hope felt out of reach.
Faith attempted to hold on with its finger nails but was losing it’s battle.

My pride was shattered.
I was not so strong after all.
I couldn’t do it anymore.

Hope deferred makes the heart sick – A Proverb‬*

My heart was sick and I felt lost in a pit of despair that no one could lift me out of. Even my wonderful husband was struggling to reach me.

There comes a time when – however strong we are – we come face to face with the depth of our weakness.

I had never imagined I could be ‘that person’. That I could reach a place where thoughts of depression, despair and even suicide not only became real but became an obsession.

I just wanted it all to stop!!

I couldn’t do this anymore!!
I couldn’t take the chaos!!
I couldn’t take feeling so ill!!
I couldn’t face the battles of trying to convince doctors to help!!
(I actually thought me falling apart mentally would make my chances of getting help for my underlying physical condition even more problematic. I was scared that they would assume it was all ‘in my head.’).

And yet I first had to face the reality of where I was. I had been battling an injury that directly affected my brain – for a year. I had spent almost 6 months of that year in bed, lying flat almost 24/7 and the rest of the year at nothing like full capacity.

There comes a time when – however strong we are – we come face to face with the depth of our weakness.

But, I still felt like I had failed. I blamed myself.
One mistake with a ladder had cost our family so dearly.
One accident had robbed us of our future.
One moment had wrecked EVERYTHING!
I decided that I had then probably ruined my last chance of getting better by ‘blowing’ this blood patch by doing too much.

I had no ‘fight’ left in me so hopelessness washed in like a flood.

EVERYTHING BECAME DARK.

I couldn’t see past the darkness. Attempts to battle negative thoughts whilst being physically so depleted and unwell seemed fruitless.

I JUST WANTED TO ESCAPE.

I convinced myself that my family would be better off without the burden of such a debilitated, chronically-ill wife and mother.

The pain of thoughts of dying came face to face with the pain of thoughts of living.

I DESPAIRED OF LIFE ITSELF

“Courage isn’t having strength to go on – it’s going on when you don’t have strength.” -Napoleon Bonaparte

BUT……. IN THE MIDST OF THE DARKNESS LOVE BROKE THROUGH!

All was not lost.

Love reached out to me and helped me to hold on.
Grace was still there waiting to be rediscovered.
I had to open my eyes again to see that the light of love was still burning in the darkness.

Family and friends simply loved and supported me. They helped me to rediscover a better perspective. My 8 year old daughter used to come and sit on my bed and with all the passion she could muster she would tell me how much she loved me and that she wouldn’t want any other Mummy but me – even when I am so unwell.

A new journey began.
It was not easy.
It has been painful.
It has been hard.
It has been confusing.

I have wrestled with myself.
Wrestled with my identity.
Wrestled with my faith.
Wrestled with the darkness.
Wrestled with various neurological symptoms.
Wrestled with how to move forward.

It has been a very confusing time symptoms-wise. After the new year things began to improve. Some things were still like low pressure headaches. Some felt different. It was hard to know what was going on in my body, brain and mind. Doctors were not always sure either.

I had to discover the strength each day to put one foot in front of the other to just get through intact. To pull through the pieces of a broken life and somehow find hope again.

“Honesty & steadfast faith – especially in the darkness – forms a powerful & enriching message for everyone in pain….. Sincerity and humility are essential.” –Samuel Chand

Darkness had enveloped me at a time when I felt like I couldn’t find God any more. Hope returned as I discovered He was there with me all the time.

I just couldn’t ‘perceive’ Him.

I had to rediscover God’s love and grace. Learn to ‘let go’ of the life I had lived and choose to trust and hope that I could recover and that there was something better ahead. I had to battle the fear and anxiety that tried to persuade me that I would never be free. I had to learn to get comfortable with stillness, quietness and to embrace true peace and rest on a deeper level.

I had to learn to perceive God’s voice in a new way and hold onto the truths spoken over me.

Breaking through the darkness quote copy

I have had to rediscover who I am in its simplest form and be OK with a more simple life for a time.

A new depth of humility helped me to see that I had sometimes  judged others ‘weakness’ because I didn’t understand them. I have now developed a deeper empathy and compassion for others facing challenges and struggles; especially those linked to chronic and mental illness.

I have had to discover a new kind of strength that is actually born out of weakness.

It’s been an immensely difficult journey and one that it has taken me a while to write about. For a long time I felt like I had lost my voice and had very little to say that could help others.

And yet.

I know that as we talk about our deepest weaknesses and vulnerabilities, others can connect with us and know that they are not alone. It then gives our own pain more purpose because our story can bring a ray of light in the midst of another’s darkness.

“We may impress people by our strengths; but we connect with them through our vulnerabilities.” – Nicky Gumbel

It can be invaluable to know that someone else is also struggling and that your journey can help them too. We can then navigate the stormy seasons in our lives TOGETHER and some how help one another to weather the storm.

Albeit wounded.
Yet stronger.
With a new perspective.
More appreciation of life.
And a deeper empathy for others.

“And once the storm is over, you won’t remember how you made it through, how you managed to survive. You won’t even be sure, whether the storm is really over. But one thing is certain. When you come out of the storm, you won’t be the same person who walked in.” – Haruki Murakami

Please do feel free to comment below. To read more about my initial injury and journey with a CSF leak/ Low pressure headaches you can see these posts.

*Proverbs 13:12 from The Bible

To read more about my story of living with a chronic spinal CSF Leak click here.

Here is a brilliant 2 min animation about Spinal CSF leaks.

For more information about spinal CSF leaks please see the UK charity website at www.csfleak.info or the US charity website at www.spinalcsfleak.org.

A fantastic informative video that you can refer to about spinal CSF Leaks, their symptoms and treatments is The Mystery Headache: Migraine, Positional Headache, Spinal Fluid Leak? by Professor Ian Carroll at Stamford University Hospital.

This is a wonderful new May 2018 medical paper about the 10 most common myths and misperceptions about spinal CSF leaks. It is by some of the top world experts in treating this condition. I was told so many of these myths by various neurologists, anaesthetists, radiologists and many other doctors during my lengthy and traumatic nearly 5 year battle with a spinal CSF leak. This kind of misinformation caused many delays, misunderstanding and great distress on my already immensely long winded and difficult medical journey.

This other in depth 2018 medical paper is about both low and high intracranial pressure syndromes and their similar and different symptoms. It also mentions cross overs with other headache types. When a patient suffers with a spinal CSF leak long term it can cause massive fluctuations in their whole pressure system both whilst suffering from a spinal CSF leak and following treatment. This is why lumbar puncture pressure readings and ICP pressure monitoring can prove an inaccurate disgnostic tool for SIH as this paper refers to as does the 10 myths paper. My initial LP reading was a 7 which was considered ‘evidence’ of low pressure by some doctors and normal by others.