Tag Archives: despair

Mental Health, Suffering & Grief

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

14 Comments

“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.

Spinal CSF Leak, Suffering & Grief

Waves of Grief in Chronic Illness

6 Comments

Yesterday was a hard day. A day where the horrible constant pain and nausea nagged and taunted me the whole day. A day where grief again came as waves that wouldn’t stop washing over me.

Reminders of loss, of restriction, of the shackles of chronic illness.

Grief doesn’t just come when people die. (Although that is one of the worst kinds.) Grief comes wherever there is loss in our lives of things that were important to us.

There is often a lot of things lost with chronic illness.

Grief brings an anxiety that attacks you. An inner pain that can take your breath away. A deep sense of loss and forced change. A feeling of being somewhat out of control. Not knowing what the future will look like. Unsure that you will always find the strength you need to hold on.

The grief is real – yet unwelcome.

Grief is the uninvited visitor who barges into your life, to brutally remind you of everything that has gone. You don’t want it there – you fight, resist it and want to chase those thoughts and feelings away.

Sometimes you can: You find a way to refocus. To remember all the good things still left to enjoy. But some days the battle rages: You spend all day exhaustingly trying to dodge and jump wave after wave…

Until in one moment – it catches you unawares – and crashes over you again. You want to scream, cry and shout out all your pain. All the heartache. The weariness of the constant battles. You want the world to know that you don’t want to be like this. You don’t want to live like this. This is not how it was meant to be. You don’t have the energy to keep facing these levels of pain and suffering.

But there is absolutely nothing you can do but try to flow with it. To try and wade through the turbulent waves. In the fight to find that deeper peace again.

Sometimes you just have to grieve. Sometimes you have to allow yourself to lament as David did in the Bible Psalms. Sometimes you must take a moment to face the reality of the struggle. To say how much it all hurts. To acknowledge how unfair it feels.

To speak the REALITY, that these days you perhaps rarely share.

I honestly get so tired sometimes of the relentless battles I have no choice but to fight.

“Confessing weakness is the doorway to hope. It marks the end of self-reliance and the beginning of letting grace do in you what you could never do for yourself.”

Paul David Tripp

Grief is such a painful word. It’s even more of a painful feeling.
It takes you over from the pit of your stomach. As you remember how things used to be. How you hoped they would remain. The person you thought you were and would be. The life you always had in mind.

Which no longer exists… Like it did before.

A significant part of my life died five years ago. My health was shattered after one fall. I have honestly forgotten what good health feels like. I don’t remember how it feels to have a body and brain that works normally. To not have this constant pressure and pain in my head and spine. It’s constant screaming for my attention. Pulling me to distraction.

I want to be present… Here with you in this moment… With others. Focusing fully on the things I need to do. Focusing fully on this time with you. But this illness, the never-ending pain keeps pulling at me. Taunting me. Shouting at me. Demanding my attention. Trying to take over my thoughts. The relentless noise in the background of everything I do.

Sometimes I just need to speak it out. To get it outside of my own mind.

To tell you how it feels. To let someone else struggling know that I go through it all too.

And in this moment I feel it with you. You are not alone. I am present with you in this distressing place. I am here with you in…

The grief. The pain. The shame. The constant distraction. The doubts that you will make it. The exhaustion of the fight.

But that is not enough is it? To acknowledge such a terrible thing and then to leave it there with no hope. With no way forward. Because that place is too hard to stay long term. That place leads to darker and more deadly places where despair takes hold until all life is squeezed out from you.

We can’t deny it. But we must find a way through it.

Otherwise we might drown.

“Occasionally weep deeply over the life you hoped would be. Grieve the losses. Then wash your face. Trust God. And embrace the life you have.”

John Piper

Some days the battle is harder. Some days it is a little easier.

But when those horrible waves of grief do come, I am learning to let them BE for a moment. To acknowledge them – to voice them. Denial never helps – it only builds then bursts you open one day to levels that are unbearable. So I must learn the patient endurance again as today I attempt to rest as much as I can, and wait for the waves to still a little more. Returning to a more steady place I can again find the strength again;

To re-frame. To refocus. To SEE with new eyes the beauty that is still here.

It’s in the facing and accepting of grief that we find a new way forward. A journey of many wrestlings where we MUST learn how to accept the things we cannot change, whilst having the wisdom and courage to change the things we can.

Neither living in denial nor getting pulled into the pit of despair.

Gratitude helps that. To see, remember and focus on all the wonder still around me. My loving husband, family, a beautiful home, food on the table, amazing friends. The opportunity to write, to see others, to encourage and teach different people through church, to make a small difference in someone else’s life. To remember all the things I can do amidst all the restrictions…

… To continue to love and to be loved.

To see beyond my own pain and allow it to produce a deeper sensitivity to others pain –physical, mental and emotional. To know that learning how to deal with my own personal battles – gives me new wisdom to help others deal with theirs. The goal that in overcoming each day – I can help someone else overcome too. To stay and fight to see the wonder still around us, the hope that can still be found.

I have to again remember that my life has purpose and meaning within all its restrictions and despite its debilitation.

This is not always as easy as it sounds. The theory is good, the practice can be so hard. Because when grief comes – it not only reminds you of what is lost, it also tries to steal everything you have left. It can paralyse you as it attacks your confidence, your peace, your mental stability, your ability to know you still have purpose and worth.

“Suffering is never abstract, theoretical, or impersonal. Suffering is real, tangible, personal, and specific.”

Paul David Tripp

Grief can pull us into itself – into ourselves.

It’s suffocating. Distressing. Disconcerting. Disconnecting.

But we have to both accept it – whilst also finding a way through it. We know we can’t stay here. Without it pulling us into dark places that are full of despair.

We have to choose to wrestle our way back into brighter places. Where we can see and be thankful for what we do have. Where hope for the future can return – despite what that actually looks like. A place where we can again see that our life matters, it has purpose and can lead to new adventures, to new places.

However, to embrace the new we must first let go of the old.

That is why we grieve.

It’s in the letting go.

It’s in the feelings of loss.

But it’s also in the letting go that we discover more freedom. In accepting what has now gone – we become more open to discovering a different way of life that is still worth living. It may not look how we imagined it. It will probably still be full of a multitude of challenges. It doesn’t mean the pain will all go.

But as we again let go of the reigns, as we stop trying to stay in control. End trying to compare our lives to an idealistic fantasy that doesn’t actually exist. Whilst we learn to accept that life can be full of things that seem to go wrong. We can also learn to ‘let go’ and discover a glorious deeper surrender in the here and now. Surrendering to a new way, a new plan and new purpose that is ordered by One who is greater than we are – if we will seek Him. A way forward in hope – even in midst of the brokenness of our world and our fragile humanity.

A way that is full of love and life. Despite the pain and restrictions.

But to embrace the new we must grieve and lay down the old. Otherwise we will never see the beauty in this season. We will never witness new birth coming from dead things. The new shoots of spring, of new life, coming from the death and desolation of the winter.

So sometimes we just have to let the waves of grief come. I have to simply allow them to break over me. And even though sometimes I may rawly feel their brutality. I hope that I can keep holding on through them to discover the beautiful horizons, that although perhaps currently hidden, still remain to be explored and discovered on their other side.

“I know it’s all you’ve got to just be strong. And it’s a fight just to keep it together, together. I know you think, that you are too far gone. But hope is never lost. Hope is never lost. Hold on, don’t let go. Just take, one step, closer. Put one foot in front of the other. You’ll, get through this. Just follow the light in the darkness.”

Jenn Johnson ‘You’re Gonna be OK‘

To explore how I find a deeper strength to face the reality of living in a broken world with a debilitating chronic illness please see “Suffering Into A Deeper Spiritual Awakening.”

To read more about my 5 year journey with a spinal csf leak please click on the SPINAL CSF LEAK heading above or read this post: Living with a Spinal CSF Leak.

For more posts since my ARACHNOIDITIS diagnosis please see the arachnoiditis menu above.

Spinal CSF Leak, Suffering & Grief

Five Years Ago: A Poetic Reflection of my Spinal CSF Leak Journey

Leave a comment

Five Years ago this week…

I fell from a small step ladder.
Five years ago this week – my life took a dramatically different turn.
Five years ago this week – I got sick and have never fully recovered.

Five whole years…

Of enduring
Of fighting
Of grieving
Of accepting

But also five whole years…

Of learning
Of growing
Of loving
Of living

One fall. One injury.

Changed so much.

My girls were just 7 & 10 the day I fell.
They were there watching me paint.
They saw it all happen.

The fall.

The getting up again.
The dusting myself down.
The continuing to paint.

The next 48 hours where their mum got more and more ill.
The constant medical, GP, A&E visits, followed by multiple hospital stays.
Seasons of me being stuck lying down flat for months on end.
Followed by the seasons (post epidural blood patches) of being upright all, or most of, the day.

They have seen it all!

The turmoil and struggle.
The wrestlings and pain.
Their mum so different.
Our lives forever changed.

Never to return to who she once was.

Lives dictated by multiple restrictions.
The never ending storm of tragic depictions.
We have had to learn how to ‘live here’ to ‘find life’ amidst all the challenges.
To find a way to live in, and through, the never-ending seasons of chaotic pain.

Sometimes life doesn’t look like we imagined it to…

We always believed I would get well!

In days…then weeks…then months…then years…

Surely I would get well again?
Surely I wasn’t such a bad case?
Surely ‘normality’ could and would be restored?
Surely the longed-for redemption would come?
Surely this, or that, treatment would work?
Surely time would bring the full healing that I need?

But ‘normality’ never came.
It remained elusive.
At times tantalisingly near.
But always on shifting horizons.
Never to fully appear.

The start of last year was another journey towards that goal.
Following a year of healing with a good trajectory. Feeling better, things improving.

Until that haunting plateau returned.

I again stubbornly kicked and pushed against it.
Determined – this time – to fully overcome.
As I tried to win the never ending bid for freedom…
I brutally whacked right into that figurative brick wall.
Running at full speed.
Determined to this time to make it fall.

It didn’t fall.

I did.

Shocked and dazed I crumpled into the mud – yet again…

Completely spent
Totally wrecked
Utterly broken

I dramatically relapsed in the Spring – physically and mentally.
I shouted and screamed internally – again.
I fell into the pitch blackness of total despair.
And I grieved like never before.

‘How am I supposed to keep living like this?
I cannot do this any more!’

Four and a half years of pain and struggle had taken their toll.
Four and a half years of fighting to be heard, and get well, had left its open wounds.

I had nothing left to fight with.

It was tough to come back from that figurative fall.

But we did find a way again.
In God we discovered a resilience that can only be found in Him.
His Words provided a way forward – an indescribable peace within.

There is always a way forward if we don’t give in.
There is always beauty to be found – even amongst the mess.
Always a light shining somewhere – even in dark places.
Always a deeper love to be discovered – even amidst intense pain.

IF we can keep following the light.
IF we can keep focusing on its radiating beauty.
IF we can allow ourselves to be guided into new horizons.

New mindsets.
Hidden joys.
Intense loves.

IF we choose to never give up…

Only then…

Can we find a new life.
Can we find a new depth of love.
Can we find new purpose.
Can we find pathways to new adventures.

If we will simply stay the course.

Who knows what tomorrow might bring?
Five years ago this week…

I fell off a small step ladder whilst painting.
Five years ago this week I tasted of the devastating debilitation of a spinal CSF leak.

I wouldn’t want to relive these past five years.
I wouldn’t want anyone else to experience those depths of struggle.
So I will fight and keep speaking out until our stories are heard.

Until change comes.

But I also know…

That I wouldn’t want to go back to who I was before that week either.
I am changed forever.
But the change is not all bad.

There has been something deeply beautiful about this impossible journey.

A profound way where excruciating pain teaches you what ‘living’ truly means.
A hard and winding path that brought many wonderful and inspiring people – whom I never would have known.
A wandering that has at times felt aimless – but has also led to glorious discoveries.
A stormy voyage that has shown me stunning new spiritual landscapes and revelations previously uncovered.

Five years ago this week I fell from a ladder.
Five years ago this week I got a life-destroying spinal fluid leak.
Five years have passed of leaking (& at times somewhat recovering).

But never getting fully well.

But regardless of the pain, the suffering, the seeming wrecking of so many many dreams.

I have lived.
I have loved.
I have learnt.
I have grown.
I have spoken out.
I have used my writing.

In the hope that one day things will be different.
Perhaps other families will be saved our pain.
Maybe one day someone’s similar journey will be easier.

Simply because,

I ran the relentless marathon first.
Refused to give up.
And told my never-ending story – despite all of it’s indescribable pain.

“I abandon my addiction to the certainty of life
And my need to know everything
This illusion cannot speak, it cannot walk with me at night
As I taste life’s fragility…
I can’t pretend to know
The beginning from the end
But there’s beauty in the life that’s given
We may bless or we may curse
Every twist and every turn
Will we learn to know the joy of living?”

(Looking For a Saviour – United Pursuits)

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.

Here is my new summary video of my whole medical journey as well as footage of my January/ February 2021 adhesive arachnoiditis relapse/ flare and treatment with IV Steroids. To see my daily video diaries from this time please see my YouTube channel: https://www.youtube.com/channel/UC9ZkCy9B_IpeaGrXd0CEgow

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.

Please see this  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 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.

Mental Health, Perspective

A Window into a Suicidal Mind

16 Comments

“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.

God & Spirituality, Spinal CSF Leak

Finding A Way Through: My Spinal CSF Leak Recovery 

33 Comments

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.

Our greatest glory is not in never falling, but in rising every time we fall.– Confucius

It’s been a while since I have written here. The last six months have been a season of deep trial and anguish, whilst simultaneously becoming a season of great joy. My ongoing health battles have been truly exhausting and yet…

I am currently seeing some light at the end of the tunnel.

And today, I have rediscovered my voice to share my story. 

Following just about holding on through the immense challenges of the the last three years – since I fell off that ladder in January 2015 – I can now pretty confidently say that it seems that I am currently in recovery from my CSF leak. We are hoping that this time – following epidural blood patch number four last September – that I can make a full recovery.

At the moment it looks like we are heading that way. And yet my three year journey has been full of a cycle of injury, treatment, recovery and relapse. So it has been intensely difficult to definitely say to the world – “this is IT!”

Although that is of course the hope and dream.

Following my long summer of 2017 spent almost totally flat in bed (or on my beautiful garden bed outside) I had a CT Myelogram scan mid September to try and locate my spinal CSF leak. Traumatically, the scan caused me to have an epileptic seizure and yet failed to evidence my leak. Such is the challenge of looking for these elusive leaks – 50% of which are never actually found. I was subsequently then left even worse off than I had been – hardly able to walk or be upright for more than a few minutes at a time. So I stayed in hospital and a week later I had a 40ml lumbar epidural blood patch (after the first one was aborted due to the needle going too far). Two days later it appeared that my headaches had shifted from low to intense rebound high-pressure headaches and I was finally discharged with the diuretic acetazolomide to help these new headaches.

High pressure headaches point to the fact the blood patch has probably worked – however the journey of trying to discern what is high or low pressure is not for the faint of heart.

In fact – over the next few weeks – it again almost completely floored me.

branches de petales

Over the following couple of months I was extremely unwell, even though I could be upright much more. This took its toll on my mental health as I struggled to work out what on earth was going on in my crazy body. One day I was sure it was rebound high pressure symptoms and the blood patch had worked – the next I was convinced it was still low pressure and that the treatment hadn’t worked. Day by day, week by week, the confusion and debilitation of severe neurological symptoms and pain – both upright and lying flat – and an inability to rest and sleep properly – took its toll on my mental health. Until I realised – if nothing changed quickly – that I was heading towards a second complete mental breakdown.  (Like the one I had had a couple of months after my second epidural blood patch in November 2015).

When suicidal thoughts began to again abound – as I again convinced myself that I was probably still leaking and would maybe never get well – I knew I had to take radical steps to calm my terrifyingly restless and anxious thoughts and again find a way through the anxiety and confusion.

“A person who worries still thinks in some way that he can solve his own problem. Worry is the mind racing around trying to find a solution to its situation” – Joyce Meyer

The darkness of hopelessness and despair began to wash over me like a flood – mixed with the sheer exhaustion of three years of fighting and partially recovering and then relapsing again and again – and I was slowly beginning to feel like I was drowning again mentally and emotionally.

My legs were madly trying to tread water to keep my head above the waters – but some moments of some days I felt far too worn out to keep battling to stay afloat.

But what choice did I really have – right?!

There is no choice – because the only other choice is the unthinkable… and yet in the darkness you DO think the unthinkable. In the silence of pain and debilitation – your mind can end up in a scary place.

You just need it all to go away…you just need the pain and struggle to end…

You even sometimes naively wish what you had was terminal – because at least then there would be an end.

There needs to be an end.
There has to be an end.

How do you keep going, when you don’t know how long you have to endure? It’s the not knowing that feeds the anxiety, it’s the fears of getting worse that drain your depleted energy… and yet there is no escape.

You just need an escape…

But then you become consumed with guilt and shame for being so selfish to not only think – but at times dwell on such horrible things. Because if I love my family then I have to endure – because love never gives up! Right!? Unconditional love endures till the end.

…And yet how do you keep on going when you are utterly exhausted and at the end of yourself.

It’s a vicious cycle.

I even shouted at God on a few occasions to make it all stop because I couldn’t take any more of it. I told Him I wasn’t strong enough to keep on fighting. I was utterly worn out in every way – I pleaded with Him for no more pain, no more medical battles, no more clear scans, no more chaos in our life, no more crazy debilitating symptoms!

Shame was pulling me back down into its dark clutches. In my mind shame taunted me with the fact I was too weak, the fact I couldn’t cope, the fact I was chronically ill and couldn’t get well, the fact I had seizured after the CT Myelogram – so thought no one would do any more scans like that now to try and find the leak. The fact that I thought soon enough Doctors would give up on my difficult case.

I heard a voice within me screaming; ‘You can’t do this! You might as well give up! You will never get well – your worthless life will be full of this kind of pain for good. It won’t get better. It will only again get worse. Relapse is inevitable – and you will only go and muck up any healing again anyway!!

I HAD to still those relentless voices.
I HAD to rediscover the voice of hope.
I HAD to somehow find a way to discipline my restless mind.
I HAD to trust God for the strength to somehow make it through.

“If you hear a voice within you say, ‘you cannot paint,’ then by all means paint and that voice will be silenced.” – Vincent Van Gogh

I had to find the voice of faith, unconditional love and abundant grace.

That still small voice that is always whispering to my heart telling me: You CAN do this and I AM is here helping you through.

I couldn’t do it alone. I needed Him to walk me through. I needed Him to talk me through.

I needed His voice.
I needed to draw closer to His heart to hear His whispers.
His words became my breath of life.
His truths lit up the path ahead.

Moment by moment
Day by day
I somehow made it through…

Even when it seemed impossible.

“You will keep in perfect peace all who trust in you, all whose thoughts are fixed on you! Trust in the Lord always, for the Lord GOD is the eternal Rock.” -‭‭Isaiah‬ ‭26:3-4‬ ‬. The Bible.

Things began to settle down a bit a couple of months or so after my fourth blood patch and I began to discover that I could be upright more and walk further – little by little, week by week.

But I knew I had to protect any progress.
I needed to focus my mind and fix it on more hopeful things.
I knew I must use my thoughts to meditate on more calming concepts.

I had to shut down the multitude of voices that surrounded me and work on listening to the one I most needed. The voice that whispered, ‘be still’ in the midst of the raging storm. The only voice that had the power to break through the deep darkness that enveloped me, with the light of true abundant life. The voice singing songs of love over me – as He navigated my broken vessel through the raging seas.

And,
…step by step…
…hour by hour…
….day by day…
…week by week…

I am finding my way into more and more peaceful waters.

Physically, mentally, emotionally and spiritually – calmer times have come.

branches de petales

I am not yet ‘back to normal’ – back to where I was before I fell that day in January 2015. And yet, I can be upright ALL day long without needing to lie down. Week by week I am growing in confidence in what I can do. Month by month my strength is building and my body is in less pain and is more fully relaxing.

I still have issues in my head. My Neurology Consultant and I agree that it seems to be a ‘hypersensitivity to higher pressure’ – so I still need a lot of calm and quiet in my days. I cannot rush about like I used to. Stress, raising my voice, singing, talking too much, bending, lifting, going to the loo – and similar things – all increase the pressure in my head.

But it is improving … slowly … and it is gradually heading in the right direction.

So that I can hope, believe and dream again – that one day I will be fully free from this horrendously debilitating condition. Free from the monster that has plagued the last three years of my life and attempted to rob far too much from our family. I still have to fight the fears of relapse – because that has been my very real experience so very many times.

But I HAVE learnt so much on this crazy recovery story – and those around me have learnt so much too.

Doctors are learning how better to treat this condition – because I chose to open up my life and to keep them informed. Patients are learning how to find a way through – because I chose to speak up, challenge misguided opinions about the condition and reach out amidst my pain. Christians are finding a way to endure seasons of great suffering – because by His grace I have somehow managed to wrestle through.

And one day – one fine and beautiful day to come – I hope that I can fully enjoy and embrace the wonder of hindsight. That in a time hopefully coming soon – I can stand on the mountain top and tell the world that I managed to just about endure and somehow made it through the pain. I have always known that that will be a glorious season – where I will shout, sing and share the tales of complete restoration and stunning redemption from the intense struggle. Where I can testify to how God brought our family all the way through.

But in the meantime…

….whilst things are still a little hazy and complete recovery is a dream not yet fully attained… I want to tell you of my gratitude. For life, love and breath in my lungs. For my amazing husband, my enduring children, my loving family, dear friends and wonderfully supportive church. I want to tell you about all the wonderful doctors and nurses that have helped me through – even when their understanding was so limited. I want to speak of my gratitude that I can currently be upright ALL day, that I can walk for miles whilst listening to music or inspiring words. That I can drive locally, go to the shops, visit friends, eat in a cafe and sit up in church.

I need to tell you that when you have tasted of utter debilitation, that being able to DO things again is a wonder to behold.

However, most of all I need to tell you about the fundamental thing that has brought me through.

He is known as Jehovah – the stunning three in one God – who so very many people don’t yet know. He is my light in the darkness. He is unconditional love in the midst of trial and sorrow. He is my undeserved grace when I completely fall apart and shout at Him in anger and despair. He is my comforter when I am distressed. He is the still small voice that sustains me. He is peace to my anxious thoughts. My fountain of life. My inner calm.

He is the way, the truth and the life.

branches de petales

But most of all I need to tell you that in and through His stunning grace – He carried me – on the days I never thought I would make it through. Sometimes through my husband, children, family and friends. Sometimes through a song or inspiring words that someone chose to share. Sometimes through the prayer offered up by someone who saw our pain. Sometimes through a whisper on the wind picked up when my heart and mind were finally still.

So I will ALWAYS hold fast to Him and listen to His songs of love – until that day comes when this beautiful scripture becomes my physical – as well as – my spiritual reality.

“My beloved spoke and said to me, “Arise, my darling, my beautiful one, come with me. See! The winter is past; the rains are over and gone. Flowers appear on the earth; the season of singing has come…”  – Song of Songs 2:10-12. The Bible.

My dream is that one day I will sing again – with all the breath in my lungs – without it hurting my head.

And on that day I will sing a new song of never ending love from my soul, to the ONE who carries us through our deepest, darkest pain.

2017-10-28 19.35.47

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.

Here is a medical journal publication about rebound intracranial hypertension (rebound high pressure) as a complication of epidural blood patching. 

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 diagnostic tool for SIH (low pressure)  and RIH (rebound high pressure) as this paper refers to as does the 10 myths paper. My initial LP in February 2015 reading was a 7 which was considered ‘evidence’ of low pressure by some doctors and normal by others.

Perspective, Spinal CSF Leak

Learning Calmness: Flowing through life with a spinal CSF leak

7 Comments

“Real contentment must come from within. You and I cannot change or control the world around us, but we can change and control the world within us.” – Warren Wiersbe

My journey over the past 2 years, or so, with a spinal CSF leak has been a journey of discovering deeper inner contentment, DESPITE physically battling the unending storm of so many physical limitations and chronic pain.

I have learnt more than ever over those 2 years that inner CALMNESS is the only way to flow through life with a CSF leak. Stress, worry, constantly pushing through symptoms too much and rushing about, simply make me feel incredibly ill and physically (and consequently mentally) anxious. They only exacerbate intense neurological symptoms.

So I am learning to…

Move slower
Think slower
Be slower

And surrender to a quieter calmer life.

This has not been an easy journey for me for many reasons…

  • I have ALWAYS lived a very full and busy life.
  • I was used to living at a FAST pace
  • I had bought into the lie, to a certain extent, that how busy you are equates to how significant your life is. As I wrote about here a while back.
  • CSF leaks mean you struggle to function upright for a long (or sometimes even a short time – as in my worst times) which brings a natural anxiety when you are feeling very ill.
  • Pain is not in anyway calming.
  • Parenting and calmness can be very challenging at times. (Especially when kids are fighting).

Because of this there were a number of things I had to face and let go of. That has been a process and a journey I am still on. So I have had to…

  • Let go of the need to be ‘someone’ and be ‘doing’ something significant and instead embrace the ‘me’ of this season and what I can do here.
  • Stop connecting my identity to what I do.
  • STOP ALL ‘rushing’ because my body simply can’t handle it.
  • Take each day as I can.
  • Learn to flow with my body and take regular lying flat breaks – rather than heroically trying to constantly to push through pain and other exhausting symptoms. (Most hours of being upright for me involve pushing through symptoms, I could not live life without ‘pushing through’ pain, exhaustion, brain fog, nausea etc. But it’s learning not to ‘push’ too much to my absolute limit, which will inevitably bring an element of physical and mental anxiety, as my body screams at me to lie flat and be released from the intense exhausting tension of being upright).
  • Be OK with missing out on events and things I used to enjoy.
  • Removing myself from stressful parenting moments – when appropriate – so as not allow stress/ raising my voice etc to make my symptoms worse.

I have had to rediscover the place of…
Peace….
Calmness….
& Tranquility….
Within me more deeply and learn how to maintain it as much as possible. This involves keeping control of my thoughts & embracing the deep serenity found in my spirit.

I have a wonderful friend who has kindly supported me a lot in this season. Who has helped me to see how to live more fully present in each moment. And to approach my ongoing health problems through ‘acceptance with hope’. This means facing and accepting my current limitations, so I can truly LIVE and embrace life here, whilst also holding out hope for a healthier future.

I read the Bible daily for wisdom and spiritual encouragement and it also talks about living in this present moment, not worrying about tomorrow, letting go of the past, whilst hoping for a better tomorrow. They are all things that have been a part of my life for decades.

“Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.” – ‭‭Matthew‬ ‭6:34‬

“…I focus on this one thing: Forgetting the past and looking forward to what lies ahead,” -‭‭Philippians‬ ‭3:13‬ ‭

However, having a spinal leak has meant I have had to delve further into these truths. So as to find the place deep within me where the river is serenely calm. It is always there – but some days it’s easier to find than other days. Sometimes the storminess above it clouds it from view. There are also times the surface pain distracts from that inner peace, because pain shouts at us so loudly.

The sky is ALWAYS blue way above the storm. If I can focus on the consistency of the blue sky above I can then dive into that river of peace within me and swim in its warm calming waters of love.

Some days and moments peace can feel elusive, you search for it and it’s a battle to find it. No sooner have you found it and get ready to dive in to its peaceful waters that you lose it again as some other anxious thought breaks in, as another memory unsettles the heart, as the pain takes over and the exhaustion floors you.

When I had a mental and physical breakdown at the end of 2015  I could no longer find that tranquil river within me anymore that had anchored me all year. It was still there but it was so hidden from me because of the chaos of my mind and body. I felt completely lost at sea, drowning in a whirlpool of negativity and mental deception.

Fear screamed at me!
Anxiety shook me!
Despair consumed me!
Exhaustion overwhelmed me!

I just needed it ALL to stop.

2016 marked my journey of acceptance and mental and spiritual recovery. It was my time of learning to LET GO. I had to conquer the anxiety that bound me. I had to find my new identity. I had to learn how to keep LIVING in the chaos and unknowns.

I had to….
look deeper
reach deeper
dig deeper
find deeper

Because I knew that was where the river of peace still flowed. I knew I had to learn how to dive in deeper.

I realised I had to go where I had never been before.

Learning Inner Calmness verse copy

That journey has been an adventure. A journey of both gritted teeth endurance, as well of a satisfying joy. A journey of discovery and rediscovery. A journey of realising a deeper and more profound love that overwhelms the fear. A journey of not focusing on what I don’t have but celebrating/ being thankful for what I do  so I can make the most of LIVING here.

God showed me the way. He gave me the sign posts. He brought the people I needed at the right time. And He spoke through the voices He placed around me. He gave me friends and loved ones to cheer me a long the way.

It’s April 2017.
I have been unwell for 2 years and 4 months.
It’s been the hardest season of my life so far.
My life looks very different to the one I lived before.

But I am a different person. If you look closely the old Becky can still be found. Many people will not see the change from the surface. My passion for God, my love for people, my fondness of communication and words are all still there. But if you watch me, if you listen to me, if you compare me to who I used to be. There is a deep transformation within me as well.

Perhaps not recognisable to everyone, but very clear to me.

And it is intrinsically linked to an increasing CALMNESS. A decision to FLOW through each day, whatever it may bring. An ability to ‘let go’ more easily and throw off the chains of worry and anxiety. A greater ability to make the most of every opportunity. More depth of wisdom…

…as I have been OVERCOME…

BUT THEN…

…became the one who OVERCAME!

Yes this Becky is very different and even though I never want to relive those dark days again. Even though I daily wish I didn’t have to dwell in this debilitated body. There is no lesson more profound than meeting the full extent of your weakness and failure face on and falling apart in a way you never imagined possible….

To then rise again despite it all…
stronger yet calmer,
wiser yet more humble,
broken yet fuller,
different yet still me.

There is always more peace to be found. It is always being offered to us as a gift. We just sometimes have to take a journey to realise how much we need it. And to learn how to break through the storm around us on the outside,  so that we can then dive into the tranquillity that can only truly reside within.

“Real contentment must come from within. You and I cannot change or control the world around us, but we can change and control the world within us.” – Warren Wiersbe

Jesus said, “”I am leaving you with a gift—peace of mind and heart. And the peace I give is a gift the world cannot give. So don’t be troubled or afraid.” ‭‭- John‬ ‭14:27 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.

God & Spirituality, Spinal CSF Leak, Suffering & Grief

‘Why Me?’ The Soul Destroying Question

7 Comments

We all know that life is full of good and hard times. All of us have experienced wonderful moments and very difficult seasons.

Why is it that we rarely ask the question ‘why me?’ for the good parts of life. I rarely think about why I was so privileged to be born into a middle class British family, rather than to a young prostitute, in abject poverty, in the slums of Mumbai. Or why I got to be born healthy with all my body parts as they should be, unlike others who were born disabled.

Yet when hardship and tragedy strikes, these questions often come into our heads and take room in our thoughts.

Why me?
Why us?
Why this?
Why now?

For you, it might be a question asked in your own mind that you simply send out into the unknown. A question that asks why are we all here and what is this life about anyway.

Perhaps it’s a scream from inside stemming from comparison. Why did this happen to me and not them? It’s not fair! I am a better person than them and do more to help others and yet they are fine and I am stuck with this.

Or for those of us who know God, it can be a cry from deep within us – why did this have to happen? I don’t understand! Why should I have to suffer like this? Why should anyone have to suffer? Is it not within God’s power to prevent this? I thought he was supposed to be good!

The questions cause us to have to consider our life, beliefs, perspective and the world more deeply. They can draw us into impossible and exhausting mental gymnastics as we try and work out the intricacies of predestination, fate, acts of good or evil and whether things in life do all happen for a reason, or are purely a random set of circumstances.

But I have learnt the ‘why me’ questions don’t get me anywhere. And they naturally lead to the ‘why not me’ anyway. It’s then just a never-ending cycle of questions that wears us out.

I still believe in and love God deeply. But my accident and ongoing debilitating CSF leak/ Low Pressure Syndrome have naturally raised questions linked to my faith. This has, at times, been a difficult journey of wrestling with the unknowns and uncertainties, considering different answers and perspectives, learning new things, but then ultimately letting go of the need to know and accepting where I am at today.

In the end what has happened, has happened.
We cannot change the past – all we can do is learn from it and move forward.
Whatever that moving forward may look like.

There is undeniably pain and suffering in the world. Whatever you believe, you cannot deny that fact. So perhaps the question should not so much be;

Why is this happening?

Which we can never completely answer and can rarely control – unless our problems are self inflicted and/ or could be self resolved.

But instead perhaps we need to change the question to focus on;

What can I DO with my suffering?

It shifts the focus from getting lost in the complexities of unanswerable questions and things we cannot currently change and puts the focus back onto what we do have more control over.

Our RESPONSE to suffering.

Can I still find meaning and purpose here?

“Suffering can be what economists call a “frozen asset.” It may not look remotely like an asset at the time, but gradually we can find meaning in it, an enduring meaning that will help to transform the pain.” – Philip Yancey

Continue reading ‘Why Me?’ The Soul Destroying Question →

Mental Health, Spinal CSF Leak

Breaking Through the Darkness

26 Comments

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.

Breaking Free, Leadership

Breaking Free! From Discouragement

2 Comments

Do you ever feel discouraged?

I do
a lot.

Or at least a lot more than I should.

In fact, I started writing this post today because I began to feel discouraged. There was no particular reason, just more general feelings and thoughts which attempted to flood my mind and pull me into a discouraged place.

That might come as a surprise to a lot of people who know me personally, because I tend to be very positive and upbeat about life.

But I have a confession to make.

I battle with discouragement a lot.

I often find it creeping up on me, tapping away at my thoughts, attempting to get its claws into me.

A cloud that comes down and brings a foggyness to my outlook. Reminding me about all the obstacles, frustrations & challenges before me. It surrounds me and it’s difficult to break through.

It attacks my confidence, enthusiasm and identity. I can feel:
demoralised,
disappointed,
downhearted,
despondent.

It sucks away at the energy and life within me attempting to
kill my passion,
steal my joy &
plunder my peace.
Until I feel like I have no energy left to fight it anymore.

But I have learnt I have to fight it early on …. Regardless!

I can’t let it win. I have to break free from discouragement and it’s hold over me before it pulls me into a darker place that I will struggle to get free from.

I have to daily ‘take on’ the thoughts of discouragement and choose to see with more hope and faith. Some days that battle is harder than others, however, it is necessary to see life more positively.

Breaking free from Discouragement copy

WHAT DISCOURAGES US?

There are lots of different things and each one of us is affected by it in different ways.
Perhaps someone let you down, broke your trust, walked away.
Maybe your job or school work is harder than you expected and you are not making the progress you wanted.
Perhaps marriage and having children hasn’t been the experience you dreamt of.
Maybe life just seems to be hard and you are struggling to muster up the strength to continue each day.
Perhaps your plans and dreams haven’t worked out, things have gone wrong and you can’t see a way forward.

Discouragement knocks at your door and it’s hard to resist the flood of negative thoughts it brings with it telling you:

You are a failure
A nobody
You are not going to make it
You are not good enough
What you do is not enough
Why not give up
No one cares
You will just get hurt
Why do you bother
Things are never going to get any better.

All this is just too hard!
Life is just too hard!

But

We can’t let discouragement win!

I believe that discouragement is one of the biggest struggles that leaders, in particular, have to overcome. Until you become a leader, in any setting, you have no idea how hard it is.

You have to find the energy and passion to keep going yourself, plus a load extra to carry everyone else with you. It’s hard. There are a lot of responsibilities & commitments, that you have to shoulder. When everyone else drops out you have to stay standing strong and do it alone if necessary.

It’s in this area that I probably face the most discouragement.

To be a leader you have to have vision. This means that you are constantly seeing what ‘could be.’ Discouragement often takes hold when the ‘could be’ seems miles away from the current reality and the progress you are making seems so slow.

Every leader has days when they feel discouraged, wish they could throw in the towel and ignore their responsibilities. Discouragement comes knocking and it takes all your might to keep the flood gates closed.

This is why we should think about how we can encourage leaders.
Trust me, they need it!

Discouragement often takes hold when the ‘could be’ seems miles away from the current reality and the progress you are making seems so slow.

HOW CAN WE DEAL WITH DISCOURAGING THOUGHTS AND FEELINGS?

We have to fight discouragment. We have to push through it.

Discouraged people discourage people.

Negativity spreads like wild fire.

When people are discouraged it spreads. It takes a lot of courage and strength to break through an atmosphere of discouragement and refuse to be part of letting it spread. But it is the only way to stop it in its tracks.

Discouraged people discourage people.

Rick Warren wrote about discouragement:

“Fight back! Discouragement is a choice. If you feel discouraged, it’s because you’ve chosen to feel that way… Hang on! Do what’s right in spite of your feelings. No feeling lasts forever.”

Some people don’t like hearing that our feelings can be a choice. It means we have to accept more responsibility for what we feel, think and how we behave.

But I believe we have a lot more control over our emotions than we might think. I am not talking about hiding them or pretending they are not there, that isn’t healthy. I am talking about learning to not be ruled or defined by them.

Emotions and feelings usually begin with thoughts. We cannot necessarily control the initial thoughts that come into our head but we can choose whether we dwell on them or not, whether to let them draw us into a negative mindset. Which is something I spoke about in Breaking Free! From Worry.

When thoughts of discouragement enter my mind if I do not stop them in their tracks they have the potential to snowball and pull in other thoughts until my perspective becomes overwhelmed and I feel rubbish about everything.

Breaking free copy

HOW CAN I FIGHT DISCOURAGEMENT?

Be honest with myself.
Trying to ignore discouragement often makes it worse. It can pull us into the dangerous place of pretending and you can only pretend for so long before the reality comes crashing down upon you.

I realise I can’t do it alone.
I am personally grateful for the inner strength that comes from my relationship with God. I talk to him. I listen to his still small voice encouraging me, renewing my strength and vision.

I speak to someone I trust and I know will encourage me.
My husband Matt is great at that. Or a close friend can help. Someone I know who will help me to see with a more positive perspective.

I read words that will help me.
From the bible, good books, articles, or the hundreds of inspiring quotes I store in my phone.

I try to remember everything that I can be thankful for.
Even when other things are going wrong around me.

I look for opportunities to encourage someone else. 
Sometimes getting the focus off me and my problems, being aware of other people’s challenges and choosing to encourage them, helps me to break through my own discouragment.

It can take a lot of courage to choose to be hopeful in the face of discouragement. To keep trusting and believing even when things are a struggle.

But it’s the only way. Despair is not an option.

In this verse from the Bible God encourages Joshua to be strong and courageous not discouraged and afraid, so that he can lead the people.
In this verse from the Bible God encourages Joshua at the start of his leadership journey.

It starts with a choice.

Choose to be encouraged. Learn how to encourage yourself and let others encourage you.

You can then become an encourager rather than a discourager to other people and help to turn the tide away from a culture of criticism and negativity.

There is always something good going on around you that you can celebrate.

We just have to choose to see it. 

I would love to hear what you think:

Do you struggle with discouragement?
What do you do to deal with it?

There are lots of things we can do to fight against discouragement. Carey Nieuwhof gives some good advice in this blog post.

This post is part of my .Breaking Free. series of posts. Click here to see posts on Breaking Free from Fear and Worry.