Tag Archives: Suffering

Perspective, Spinal CSF Leak

Embracing Simplicity

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“Out of clutter, find simplicity. From discord, find harmony. In the middle of difficulty lies opportunity.” – Albert Einstein

Over the past couple of years I have often felt like my life has been aggressively and almost completely stripped back. The core of my life is still much the same as it has always been. Yet I often feel like a tree that has been radically pruned. With so many of the branches of my identity and the things that I used to do being brutally chopped off and left to die. Leaving something quite exposed and bare, with many stubs where branches used to be.

When you spend most of your day lying down, and the time you can be upright is exceedingly limited by various intense and horrible neurological symptoms, you find that your life becomes extremely restricted. Everything becomes immensely simplified in many ways (even though there are also many complexities to contend with too). Life mainly consists of things you can do lying flat, or the few limited things you can do whilst upright – although still feeling very ill.

It’s been a very challenging journey to embrace a more simplistic life. 

It doesn’t help that we live in a society that often glorifies busyness!

Our Western society is full of people who often seem to wear badges of importance – based, in part, on how busy their life is. Most people are forever expressing how immensely busy they are. This makes it extra hard for those of us who are ill long term, because we have to instead embrace a new identity that can no longer be defined by our busyness. Suddenly we can feel somewhat detached from normal society – a bit of a ‘nobody’.

Everyone around us seems to be carrying on with their ‘normal lives’ whilst we feel like ours is stuck. 

We live in a never ending state of limbo, not knowing if or when it will change.


In my 2015 post Is Busyness a Choice? I spoke about an article by Scott Dannemiller called ‘Busy is a Sickness’. In it he wrote:

“… we are defined by what we do. Our careers. What we produce. It’s the first question asked (of us) … The implication is that if I am not busy doing something, I am somehow less than. Not worthy. Or at least worth less than those who are producing something.”

I really do believe that this is a massive problem for those of us who face long term debilitation. 

We not only have to take a very humbling journey of coming to terms with it ourselves; we will also often have to face others’ questions, attitudes, and sometimes prejudice – as well as naivety and ignorance – towards our disability and inability to do what we once could do.

We find that we begin to lose much of our identity, because it feels like we are not doing much anymore. Rather than being an active member of society – we feel pushed to the side lines, often misunderstood and sometimes even forgotten about.

We are suddenly not so sure who we really are any more and our condition begins to knock our confidence – until we perhaps no longer feel like we ‘fit in’ with normal society like we used to.

Over time, we realise that we have to go through a deep and painful process of grieving and letting go of who we once were. And much of what defined us. 

So that instead we can truly embrace who we are now – in this season. We actually have very little choice in the matter – if we cannot change our current circumstances ourselves then we have no option but to accept it and find a way to live the best life we can amidst all the restrictions.

I learnt over time that I had to stop torturing myself with what I could be doing IF I was well. I had to give up imagining how different life could be if I was healthy. I had to refuse to compare myself to what ‘normal’ people were doing and instead embrace the quieter and more simple life, of mainly being at home, often lying down. I had to see the opportunities that could be found here instead.

We must learn to establish a daily discipline of choosing to see the beauty and wonder in simplicity. To somehow embrace a simpler life. The more I go on that journey – the more I see that there are still so many things to be thankful for and enjoy here.

Despite the restriction, debilitation and pain. 

Really it is all a matter of perspective. As many things in life are. 

Attitude is everything! 

Since I have battled this chronic illness I have realised more than ever that we are often fed a lie by society and the media that our life should always be lovely, fun, immensely satisfying and great. Everything should be as perfect as it can be – and it will be – IF you have enough money, health, great jobs, nice homes, loving families, expensive holidays and up to date gadgets etc. Then we will all be perpetually happy.

BUT it’s just not true!

Hence why there are so many miserable, struggling people who actually have all those things in abundance. Sometimes it’s the people I know who have the most of all those things who are the least happy. Mainly because that mindset draws you into a never ending cycle of desiring more and more – which only leaves you increasingly discontented in the end. Because there is always someone around who seems to have a better lot in life and appears to be happier than you.


I have learnt so much through my two-year journey about trying to be more grateful for the small, everyday things, whilst learning to let go of ‘the dream’ of ‘normal living.’ In doing that (which is a very raw and painful grieving process) I learnt I could find so much joy and wonder here too. And if I can find it here, then I will be so much happier – as well as more content and thankful – when I do hopefully get well. If I can learn contentment without having all the things the media tells me I need – then I will be happier for a life time regardless of whether I stay sick or get well.

It’s a lesson I have also had to embrace with regards how I parent my children. It truly is heartbreaking when sickness robs you of being the parent you always desired and planned to be. It’s a very difficult thing to face and unfortunately you can find yourself envying other healthy normal parents, which doesn’t help.

When I experienced a complete physical and mental breakdown at the end of 2015, it was the grief of letting go of being the Mum I was and wanted to be that caused some of the deepest inner pain. I am so very thankful that my girls are now that bit older and slightly more independent, which makes things so much easier for us as a family. And yet currently I can’t go out with them or do most of the fun or even necessary things we used to do.

I really am currently stuck at home, mainly lying flat, nearly 24/7. 

However, I have also learnt that sometimes my kids can learn better life lessons from us facing this as a family than they could if life was just ‘normal’ and great. I realised that if I can’t find a way to truly live here, in the midst of the disappointments, then how can I help them to know how to face their own challenges and disappointments in life? They will certainly come at some point. If as a parent I can’t come through the crisis, then what does that teach them? But if my children can learn how to endure life trials – from me and my husband – then they will hopefully be much more stable and wholehearted adults.

Adults who can weather the storms of life and stick out long term relationships much better. Meaning they may well be happier and more fulfilled adults because of this. It will also hopefully help them to grow in compassion for others, so that they learn not to ignore or avoid another’s pain, but instead look at how they can share it and help support another in and through it.

Compassion is a stunningly beautiful quality to have. 

As my body is so restricted on the outside, I actually often feel the energy of what’s within intensify. It’s like there is this ball inside me with a mixture of so many different emotions. I know I have to redirect the ones that want to pull me into a dark place and allow the positive ones to become increasingly dominant. So I am trying to focus my own pain on connecting and helping others in theirs.

I have decided that I must find a way to live like this – so that I can help another walk through their own deep darkness of facing this condition or similar debilitation.

It’s allowing the love, grace and compassion that is within me to break out to help someone else. It’s channelling my hurt into feeling another’s pain with them so that I can then say, “How can I help you today? What advice can I give you from the lessons I have – sometimes painfully – learnt over the years.” 

These are some of the simple things in life that I can still embrace and still do. And it’s when I am focused on things such as these that I am drawn less into only seeing the negatives of my current predicament. It is then that I often find the beauty that is found in simplicity. And it reminds me that even if my body remains debilitated, on the inside I can still feel fully alive.

So let me embrace the wonders hidden in the simplicity of my current circumstances. Because if I can do that – in this place – I will hopefully discover a deeper contentment and satisfaction that may well last a lifetime as well. So that IF one day I can leave this whole immensely difficult season behind for good, I will at least have learnt more lessons and disciplines through it that will become the firm foundations of my life tomorrow.

So that although I have had to experience a major pruning and cutting back that has left me looking exposed and bare today, perhaps in the end it will simply leave room for growth that will allow new shoots to form tomorrow. Producing a stronger tree in the future that is happier, healthier and bears good fruit in the right season.

None of us know what tomorrow will bring. 

But if we can all learn and grow enough today, so that we can somehow find the inner strength to face whatever might be thrown at us tomorrow, we will be able to take our stand in the crisis and allow this cry to rise up from within us to say:

 “However bad this gets and however long it goes on for… I am determined to find the best life that can be lived here – in all its gloriously redefined simplicity.”

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.

Suffering & Grief

The Humility That Is Found In Suffering 

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“There is no growth without change, no change without loss and no loss without pain.” – Samuel Chand

One of the most painful, yet ultimately liberating, lessons I have learnt since being ill long term, is the potential suffering has it has to bring far more humility and compassion for others into our lives. 

Anyone who has suffered from any debilitating chronic illness, a life changing disease or injury, or has gone through a season of suffering due to the loss of a family member, or other traumatic events, will tell you that it truly humbled them in a way normal life never can.

When things go wrong in our lives we crave to have normality back – as if it’s the most precious gift of all. We fondly remember how much easier life was, even on the ‘tough normal days,’ when we had our health or loved one and life was going ok.

But when you have faced some kind of personal tragedy, or some kind of deep suffering barges its way into your life, you soon learn how hard it is to lose what you perhaps took for granted before hand. You discover how much your confidence and coping mechanisms get crushed.

It is often only in suffering that we truly learn who we really are. We become more aware than ever of our many personal frailties and weaknesses. 

We wonder if we truly have the strength to make it through. 

It’s usually only when we see what ‘rock bottom’ truly looks like for ourselves, in all it’s darkness, pain and desolation, that we begin to understand how ‘rock bottom’ looks and feels for others. 

When you meet people who have faced suffering like you, or even differently, but in a similar light to you, there is a knowing look shared between your eyes when you meet, or a deeper message running through the words when you talk. There is a heart connection that silently says, ‘Yes, I know…. life is so very tough sometimes…. I know what it’s like to be completely broken…. and I know what it’s like when you have no idea about what you are going to do make it through.’

“The beauty of humanity is that suffering can, if we let it, unite and draw us together in a way that nothing else can. It strips us of our titles and crafted exteriors and touches the heart. It has the power to break through masks, if we let it, because it touches who we really are.

And we all need that:
 Sometimes our hearts need to be exposed. 
Our weaknesses need to be seen. 

Because it is then we realise that we are ALL just fragile humans. It is then we realise that we are ALL more similar than maybe we thought. It is then we know that we ALL face challenges and we ALL feel pain.”

I penned those words in one of the first blog posts that I crafted a year after we lost my Mum. It was a time of processing my thoughts and emotions, whilst trying to connect with others. Thankfully, I had already taken the time to walk myself through that difficult, but rewarding process of increased self-understanding, a few days before I embarked on my next, even bigger, encounter with pain and life changing suffering. I fell from a ladder and sustained a debilitating spinal CSF Leak that I still have today over two and a half years later.

It has been through this more recent journey, that has included walking through a different type of grief, that has taken me so much deeper into those same truths I wrote about then. Suffering does touch our hearts profoundly, it reaches to the core of our being. It strips back all the trappings of everyday life and reveals to us the things that really matter. Masks and pretence are thrown away, as we are pulled out of our comfort zones and realise that we cannot do this alone. Those of us who once considered ourselves rather strong and able, suddenly find that we are, in reality, far weaker than we ever imagined.

….. And it is truly humbling.

But that is why there are elements of suffering that we can also embrace, because often it makes us kinder and more compassionate people in the end. It stops us being so judgmental of others – it can actually level the playing field of life – as we truly see that we are ‘ALL just fragile humans.’ 

“In his delightful little book ‘Off the Sauce’, Lewis Meyer writes: If one could use only one word to describe the feeling of an AA (Alcoholics Anonymous) meeting, it would be love. Love is the only word I know that encompasses friendship, understanding, sympathy, empathy, kindness, honesty, pride, and humility. The kind of love I mean is the kind Jesus had in mind when he said, “Love one another.” Shoes might be shed, attention might be diverted, but there is a closeness between AAs, a closeness you seldom find anywhere. It is the only place I know where status means nothing. Nobody fools anybody else. Everyone is here because he or she made a slobbering mess of his or her life and is trying to put the pieces back together again. First things are first here…. I have attended thousands of church meetings, lodge meetings, brotherhood meetings—yet I have never found the kind of love I find at AA. For one small hour the high and mighty descend and the lowly rise. The leveling that results is what people mean when they use the word brotherhood.”

I read these words recently in a wonderful book by Brennan Manning called ‘Abba’s Child, The Cry Of The Heart For Intimate Belonging.’ They are such challenging words to us all. A profound reminder that it is only in the deeply humbling experience of coming to the end of ourselves, and truly realising how weak, broken, messed up, selfish, dysfunctional and ‘not good enough’ we ALL are, in our own ways, and being real and open about it to others. That it brings the ‘levelling’ that is desperately needed to show the deepest love, grace and humility to others too.

When you know the dark reality of ‘reaching the end of yourself’ you do find that ‘we are all more similar than we think.’ We are ALL humans who have weaknesses and insecurities, which become increasingly obvious when we are faced with an extremely difficult season of suffering.

Suffering exposes our many weaknesses, it makes us feel awkward and uncomfortable and can fill us with shame when we shockingly find that we lacked the ability to cope as we thought we should. But sometimes we must simply let it do its work in us. To embrace, rather than run from what it discovers, then face it, be real about it and look at what we can learn and how we can change. This is always the start of a deeper transformation that will make us kinder, more accepting and loving people.

“Not everything that is faced can be changed. But nothing can be changed until it is faced.” – James Baldwin

Do you not love the idea of a world where ‘status means nothing’ and nobody is trying to ‘fool anyone’ anymore with their masks, carefully crafted exteriors and pretence? When we are aware, honest and humble about our weaknesses as well as strengths, so that we can be kind and compassionate about an other’s as well.

“If you think you are too important to help someone, you are only fooling yourself. You are not that important.” – The Bible*

Suffering helps us to see that maybe we were not quite as strong, good or important as we maybe once thought. It helps us to acknowledge and see our weaknesses – if we embrace it properly. Which will, in turn, hopefully take us on a new journey of self awareness. We then find that we have to accept the reality of where we are. Even with its many difficult and uncomfortable thoughts and feelings, as well as its multitude of insecurities and unknowns.

So that even in the midst of it we begin to see that even when we have hit rock bottom, it is not always such a bad thing to experience. Because then I will taste a bit more of that unique humility that is found there, I will know what it’s like to battle darkness face on. I might walk with a new limp where suffering took me down for a while. But ultimately I managed to get up and carry on regardless, even when the scars and wounds are still there.

It’s in the raw vulnerability of those real moments, when we can reach out our hand to another, and our eyes and words will meet in that place of unspoken heart to heart understanding. And it’s there we will find we can walk together through our storms; as equally broken, yet ironically stronger, kinder and wiser humans.

Until one day we find how much it has changed us. 

And that is the moment we truly begin to see the wonder, humility and connection that can come from suffering…

… but only IF…

We choose to let it do it’s mysterious work deep within us, by finding the resolve keep seeing the beauty that still resides in its very painful midst.

“The beauty of humanity is that suffering can, if we let it, unite and draw us together in a way that nothing else can. It strips us of our titles and crafted exteriors and touches the heart.”

*Bible Verse from Galatians 6:3 NIV

For links to posts mentioned above and quoted: ‘A Year Ago Today: A Journey Through Grief And What I Have Learnt.’  and more about my Spinal CSF Leak: Living with A Spinal CSF Leak

Here is a short video that raises awareness of Spinal Fluid Leaks.

God & Spirituality, Identity, Perspective

What Is Within Us Is Who We really are. 

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Over the past two years whilst my body has not been working properly, I have had to learn that what’s inside me, who I am within, is far more important than what is seen on the outside. 

On the outside my body is currently broken and debilitated by my spinal fluid leak. But I am increasingly learning that it’s what is on the inside that truly counts. 

So even though I am currently struggling to change the limitations of my physical body, I know I can still develop the person on the inside of me, whatever is happening on the outside.

This means focusing on feeding what is inside of me with good thoughts, words, inspiration and ideas. Having the wisdom to know how to cultivate the good parts, then allowing the positives (as well as the stark reality of the difficulties) to break out through my writing and in my communication with others.

That is why words are so precious to me. 

That is why writing is a wonderful gift, because it allows me to try to express the inexpressible. It allows something of what is on the inside to break out to speak and connect with others.

Last night, I was trying to describe to my husband Matt how, whilst my body is stuck lying flat nearly all day, it feels like what is deep inside of me keeps intensifying. Even the pain and struggle of this season fuels this ball of passion inside of me, a force that I want to be characterised mostly by love, compassion and grace, and yet still have the rawness and reality that comes with our natural human weakness. And I have certainly become more aware than ever of my weaknesses over the past two years.

I believe suffering brings a whole host of deep feelings inside of us. Some are good; it can develop more humility, more understanding of others pain, more compassion for those hurting, more personal resilience and strength. But on the not so good side; suffering can also draw us inside ourselves, we can easily become self absorbed and left sinking into a pit of self pity and despair that becomes extremely hard to climb out of.

All extremes of feeling and thought come at me daily. Some days and sometimes it takes all my might to redirect the negatives. Sometimes it feels almost impossible to stop them overcoming me. I can have many moments of tears and emotional/ mental exhaustion.

Yet I know I have to fiercely guard my heart and mind and protect what is inside of me. Every day I have to choose carefully what to fill my mind with. Every day I have to be ruthless in taking control of my thoughts. Every day I must make myself see the beauty and wonder that is still always around us.

“Guard your heart above all else, for it determines the course of your life.” – ‭‭A Proverb‬*

I must keep choosing to see outside of myself and look at how I can contribute positively to the world around me. I must stir up the wonder of what is inside of me, until it breaks out in and through my words and actions in the form of love, grace, compassion and fighting with, and for justice for, other people.

For me what is inside is intrinsically linked to my spiritual faith. You cannot separate the two. That is what inspires my many words!

It is through spiritually inspired words, thoughts and ideas that I feed the good parts of what is within. It is only in and through my love for God and other people that I personally can and will find a way to live like this, for as long as I have to. It is God’s Spirit that lives on the inside of me, that is at the heart of the ball of passion and love that inspires and creates the words that I speak and share.

It is God who leads me through this dry and desolate land and helps me to change the way that I think. Through His words, truth and other people’s wisdom, kindness and love, I can cultivate what is on the inside of me so that the good stuff can grow.


Some people must wonder how I can still love and trust in a loving creator God, when I am stuck with this cruel debilitating physical condition. But for me, I just don’t know how to live without him. I have wrestled through many questions and thought through the whys, as I wrote about in Why Me? The Soul Destroying Question.  And yet sometimes we have to just let go of the whys and instead focus on what we do know.

I know more than ever that God is alive within me and that he fills me with his peace and love. Even while there is seeming desolation on the outside….

Deep within me there is a whole other world. 

I want to discover more of the incredible beauty of that deep potential within me. A place that has been made raw and real by suffering and pain. And yet a place that is made beautiful and tender by unconditional love. So that I can dive even deeper inside me to find what can touch another deeply inside of them as well.

I don’t want to settle for just surface connection with others. Instead, I want to reach out and connect with another’s heart. I want to honestly meet them there, in their deep reality of both joy and pain.

So I need to do all that I can to keep being filled with inspiration. One way I do this is to read various ‘devotions/ inspirations’ on my You Version Bible app each day. Those words of inspiration by various authors, when added to the truth and beauty of Biblical words, feed my spirit and soul and re-balance my thoughts and emotions.

Some days when I open my Bible app to read God’s words, I am like someone who has not eaten for a while, desperate for some sustenance, craving more deep satisfaction.

I can often wake up in the morning and suddenly remember the reality of my current life and discouragement and despair can begin to try and seep into my mind and heart. It’s then more than ever that I know I need some deep inspiration from God to hang my perspective on again, as I start my day.

“But if I say I’ll never mention the Lord or speak in his name, his word burns in my heart like a fire. It’s like a fire in my bones! I am worn out trying to hold it in! I can’t do it!” – ‭‭Jeremiah‬ ‭20:9‬, The Bible

When I take the time to invest in filling myself with good words, they increasingly burn within me. They are like fuel that keeps the inside aglow. It’s only if I put the right inspiration within me that the right inspiration will come out of me.

I really do love and value words so much.

  • Because words are what connect us all together.
  • Words are what communicate from what is within us.
  • Words are what encourage and inspire us in the hard times.

So I have decided that whilst the never ending battles continue on a physical level, I want what is on the inside of me to tell a very different story. An adventure that probably won’t be seen much from the outside. But if you listen carefully you will still hear something about it. As I use words to attempt to describe to you what is truly going on deep within my soul.

 “You cannot kindle a fire in any other heart until it is burning within your own.” Eleanor Doan

*Proverbs ‭4:23‬ ‭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.

Perspective, Spinal CSF Leak

Reframing Negatives To See The Positives

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The expression ‘REFRAMING NEGATIVES‘ to see them in a more positive light, captured my attention recently. One of my friends had been talking about it and then a couple of days later I happened to read it in a book as well. I really liked the concept and have been pondering how I can apply it to my own life and current health challenges.

How can I reframe a negative situation so that it can be viewed more positively?

It’s often not easy to do this when you are facing challenging seasons. But I do have to ask myself daily – what is my other option? I could spend each day dwelling on, and being overcome, by all the negative implications of my current restrictions. But then I am just going to end up in a cycle of despair and frustration.

I have been there and it is fruitless, so very destructive and just makes me feel worse in every way.

So my only other option is that I have to reframe it! I have to find some positives here!

reframing negatives copy

Reframing is simply about looking at something with a different perspective. It’s about seeing ourselves, others, a circumstance or situation with new eyes. It can be a powerful and transforming process if we can fully embrace its potential.

“The real voyage of discovery consists not in seeking new landscapes, but in having new eyes.” – Marcel Proust

Our lives here are such, that there is always a sense of uncertainty about tomorrow. Yes there are some things we can predict, believe or hope for, because of decisions and choices we make today. But very little of our day to day existence in this world is truly fixed. There is an impermanence about our current lives. We all have to dwell in these fragile bodies that are subject to death and decay.

And yet there is also always a bigger picture we can’t see. I may only know the significance of today when looking back from the hindsight of tomorrow. Some parts of today may look desolate, like the deadness of a tree in winter, but perhaps my spring is coming somewhere around the corner. Maybe green shoots of life will again appear and grow from what currently looks almost dead. And that may look very different than I can perhaps imagine with the limited perspective of today.

Perhaps tomorrow can and will be better than today. Or perhaps tomorrow will bring even more challenges. But then in the weeks, months and years that follow, things might again be totally turned around.

We often just don’t really know what the future might bring!

I regularly have to look at my current health problems like that. I can see how one day, if fully recovered, I would get to look back, and whilst not forgetting the struggles of this season, I would by then be more able to focus on the lessons learned as well as the depth gained.

But that perspective is so much easier to SEE when approached with the gift of hindsight. When the storm is finally over it’s easier to look back and be thankful about the fact you survived and have learnt so much from walking through it.

And yet,

It’s not so easy to do that when you still feel stuck in the storm and there is currently no true ending in sight. You are weary from the mountain of disappointments, you are tired of hoping and believing it will soon come to an end – but then it never does.

But life still has to go on regardless!

The storm won’t yet clear – but life is still happening, time is still ticking away.

reframing negatives LIVING copy

We have to find a way to keep on LIVING in this limbo – however long it lasts. I have to find ways to REFRAME the life I find myself living and find a way to live the FULLest life I can, amidst all it’s challenges and restrictions.

The unfinished painting, that is my life, is not looking as I hoped and intended it to look after 37 years on this earth. But rather than hide my unfinished ‘work in progress’ life painting away in the shame of its current state.

I have to choose to reframe it and hang it up for all to see – both the darkness AND the bright colours of this season. To show others that even the dry desert seasons, that seem to rob us of who we really are and want to be, can also produce exquisite detail. Detail that will reveal a new level of vulnerability and humility, if we let it. A deep work that brings growth, maturity and a better perspective during the struggle’s of this life.

I may not get to choose whether I walk through this road of chronic illness and pain. BUT if I can’t find a way to keep on LIVING here, how can I ask others to keep on LIVING and persisting in their own wilderness or stormy seasons? If I can’t reframe my own challenges to see the potential beauty here, then how can I support others to discover beauty when they are going through even tougher times than me.

I have a responsibility to my family and those around me, to find a way to reframe my struggles, challenges, weaknesses and failures. Until they become a voice to help encourage others in their own wilderness times.

reframing negatives voice of hope copy

Everyone faces battles that feel beyond them, at some point in their lives. And when we do, we need those voices that help us press in for the fight. People that understand both the pain of suffering and struggle, as well as finding a way to truly LIVE and press forward in its midst.

We need to hear the message that TOGETHER we can rise above the darkness of today. Until, even in the midst our own pain, we can become a beacon of hope to another.

So I choose to hang my ‘work in progress’ life painting where it can be fully seen. With all of its inaccuracies, imperfections and shadows. With both the lighter AND the darker shades both fully exposed. So that TOGETHER we can choose to SEE something different. And realise that the most inspiring and beautiful works of art are often not the ones of perfection. They are instead, the ones that tell a unique, expressive story of a REAL life lived.

A life of BOTH light and dark moments that are being made beautiful. Because the artist chose to see the potential of different shades of colour mixed together. A story that is being written to express something extraordinary. A masterpiece that will only become a masterpiece when it is finally finished. And when it is finished the times of preparation, rubbings out, mistakes, corrections and so many reworkings are no longer even perceived underneath.

A painting which tells the story of one person’s life journey. A human journey of both joy and pain, sorrow and laughter, suffering as well as true peace.

A picture that most of all I hope will tell a story of true love. A story about how it is love alone that truly conquers the darkness. It is love that can reframe any negative, until it ultimately becomes something far more vibrant and beautiful in the end. It is love that chooses to fight and never give up, even when our body is failing us.

So let me reframe my current challenges and see them in the light of love. How can I love in the midst of my ongoing storm? Who should I show love to in THIS season? How can I serve others around me, despite the many limitations of today?

So I welcome you into my world, with love, hoping and praying that TOGETHER we will find a better way through. That we can walk with each other celebrating the brighter seasons, whilst ALSO helping one another to reframe the darker moments of our lives. As well as the many many different shades of life in the inevitable seasons of the ‘in-between’.

“God had a purpose He knit you together for
But life has pulled at the seams
And you’re unravelling
And you can’t hold it together anymore
But God will, He will finish what He started
No thread will be left unwoven
Nothing will be left undone…..
But when He’s finished we will SEE
A beautiful tapestry
And know that nothing has been wasted in the end.”
– Steven Curtis Chapman ‘Finish What He Started.’

“For we are God’s masterpiece…”
‭‭Ephesians‬ ‭2:10‬ ‭(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

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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 →

Breaking Free, Spinal CSF Leak, Suffering & Grief

The Shame of Chronic Illness and Pain

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‘Shame derives its power from being unspeakable…. If we cultivate enough awareness about shame to name it and speak to it, we’ve basically cut it off at the knees. Shame hates having words wrapped around it. If we speak shame, it begins to whither.” – Brene Brown

Over the summer I read Brene Brown’s fabulous book ‘Daring Greatly’. The book follows on from her famous TEDTalk on vulnerability that had previously inspired me to write this blog post on the power of vulnerability.

The full title of the book is ‘Daring Greatly: How the courage to be vulnerable transforms the way we live, love, parent and lead.’ It encourages us to dare to be honest about who we really are, rather than trying to hide our weakness. It teaches that vulnerability helps us to live more ‘wholeheartedly’, connect more with others and that it helps us to overcome the destructive burden of ‘shame’ we all carry.

Her book really got me thinking about this concept of shame. 
It is not something we often think about.

I have been part of the Christian church all my life so I am used to hearing the word shame. We believe it is something destructive that we can overcome and that the grace provided by Jesus’ death and resurrection can break us free from its grasp.

And yet, this book caused me to really reflect on shame; what it is and what it really means. It inspired me to consider these questions;

Where does shame have a hold on my life?
How does shame effect my thoughts and actions?
How might shame be damaging my wellbeing & relationships?

shame-quote-2

What is shame?

Words we often connect or use interchangeably with shame are words like: embarrassed or humiliated. It can manifest as feelings of inadequacy, guilt or regret. It’s something we often hide and cover up. We might self medicate to avoid thinking about it. We dread people seeing it.

And yet although shame is often seen as one and the same as guilt, I have come to see that there is a distinctive difference.

One of the main differences between shame & guilt is that guilt is the feeling of embarrassment or regret about something YOU HAVE DONE WRONG. We can feel shame, on the other hand, even when we have NOT DONE ANYTHING WRONG.

Shame is more connected to who WE ARE and how OTHERS PERCEIVE US.

“It’s a painful feeling about how we appear to others (and to ourselves) and doesn’t necessarily depend on our having done anything.” – Joseph Burgo

The more I thought about shame and how it manifests in my life, the more I became aware that it is intrinsically linked to the struggles I face at the moment. I began to see how shame had got a hold on me and particularly how it has effected me over the past year or so.

Finally I began to see and recognise that;

I FEEL ASHAMED THAT I AM BATTLING A CHRONIC ILLNESS!

There we go I have said it. It’s out in the open…

I feel ashamed that I am ill.
I feel ashamed that it has gone on so long.
I feel ashamed that I can’t seem to get well.
I feel ashamed that I cannot work and be busy like I used to.

I feel embarrassed to be sick!

shame-copy

When I decided to speak up and write about feeling ashamed of being ill, it led me to google the words; ‘the shame of chronic illness.’ Through that search I found two insightful blog posts by a lady called Angelika Byczkowski in which she shares something of her battles with the chronic connective tissue disorder – Ehlers-Danlos syndrome (EDS).

She writes so beautifully about the humbling journey those with chronic illness and pain are forced to take;

“When I recently read the phrase, “I’m embarrassed to be sick,” it made my stomach clench and my breath catch. That’s exactly what I’ve been feeling….. I am ashamed of being sick….
…. If all the people not yet affected by chronic illness acknowledged all the undeserved pain in this world, they would be forced to confront their own vulnerability to the same forces. Instead, we all prefer to believe we have the power to prevent such disasters in our own lives. Sometimes I even catch myself thinking, “If you’re so smart, why did you let this happen to you?”

Those words were so revealing to my own heart. I have begun to see that I feel like a ‘failure’ for being sick. I feel like – ‘if I was only a bit stronger or wiser, made better choices, if only a bit more positive, if only I had more faith …. surely I could have overcome this sooner?’

Such thoughts often taunt me and drag me into a dark and negative pattern, which was particularly bad at Christmas, where I blame myself and feel responsible for still being ill.

It’s so humiliating to be so unwell and in pain long term.

Angelica highlights this so beautifully in another post called ‘The subtle arrogance of good health’. She writes about how many of us have fallen for the trap we set ourselves, because before we got ill we carried a form of arrogance at being healthy .

“My attitude was the typical thoughtless “arrogance of good health,” the attitude of those who can’t even imagine what happens when a body stops functioning properly. This arrogance knows only the kind of pain that heals, the kind of sickness that is cured.”

As I read those words I too knew it was talking about me. Before I got ill, I had carried the ‘arrogance of good health.’ I had believed that I was strong enough to shake it off when others couldn’t, because that was all I knew.

I was not the ‘type’ who would succumb to its chains. I was always so healthy and surely I could overcome anything thrown at me right? Surely my faith and positive mindset would win?

And then one day in January 2015 I fell off a step ladder and entered the world of chronic invisible illness and pain. I acquired a debilitating spinal CSF leak and brain injury that I haven’t YET overcome. I have been unwell for 20 months. Each and everyday I battle through chronic pain, physical & mental fatigue, a foggy brain, barriers to treatment and the challenges of not ‘being able’ to heal up, get well and get free.

And honestly,
I feel ashamed on so many levels!!

I feel ashamed that I have now become one of those people with ‘chronic pain’ and ‘chronic illness.’

I actually hate using the word ‘chronic’ at all! (Which is revealing of the sterotypes I accepted before).

I feel ashamed to tell you that I feel weaker than I ever imagined possible; physically, mentally and spiritually.

I feel ashamed that my ‘old’ positivity has taken a massive hit and most days I battle overwhelming feelings of despair at the thought of not getting better.

I feel ashamed that I broke down mentally at Christmas, exhausted and with nothing left for the fight, and seriously considered ending my life. I feel ashamed that the same ‘selfish’ thought has returned at times since then, although thankfully not to the same depth.

“In my view, suicide is not really a wish for life to end.’
What is it then?’
It is the only way a powerless person can find to make everybody else look away from his shame. The wish is not to die, but to hide.”– Orson Scott Card

I feel ashamed every time I have to update people on where I am at, and that I have to tell them I am still not well, it’s got worse and it is not yet over.

I feel ashamed when I can’t tell you that I have finished the fight, overcome, won and beaten this dreadful condition.

I feel ashamed that I cannot yet testify to the fact that I am now fully healed and whole, even though I believe in a loving creator God and Father who can do the impossible.

“O my God, I trust in You; Let me not be ashamed;” Psalms‬ ‭25:2‬ – The Bible

I feel ashamed telling doctors that I can’t seem to get better and hope that they will see past the ‘chronic pain’ patient with the unusual condition and know that it’s not ‘all in my head’ so that I can continue to get treatment.

I feel ashamed when the scans are clear and don’t show any evidence of a CSF leak, when the treatment I receive doesn’t ‘fix’ me or when my symptoms don’t always fit with the diagnosis.

Each day this drags on the shame gets worse.
Each day the shame is becoming almost as much of a burden as the illness itself.
Each day the shame is debilitating me and making me feel small.
Each day the shame is robbing me of my voice and tempting me to retreat from the world.

And it has to stop!

I HAVE TO BREAK FREE!shame-quote-copy

So today I am making the ‘unspeakable’ speakable; for myself and the multitudes who also travel the dark road of chronic illness and pain.

I am speaking out my shame so that it can no longer chain me up with its lies. I am choosing to acknowledge the space it has taken up in my thoughts; so that we can tear down its strongholds together.

Today I chose vulnerability; to speak the unspoken, so that you and I won’t have to suffer again in silence.

Today I choose to fight shame so that even though this condition taunts me daily, trying to persuade me I can never be free; it doesn’t have to define everything I am, do, and my relationships with those around me.

So today, whether you are battling chronic illness and pain or know someone who is; I pray that together we can tear down the ‘chronic pain’ stereotypes that perhaps we also once secretly adhered to ourselves, and no longer allow it’s shame to rule our and others lives.

“If we cultivate enough awareness about shame to name it and speak to it, we’ve basically cut it off at the knees. Shame hates having words wrapped around it. If we speak shame, it begins to whither.” – Brene Brown

What do you feel ashamed of? We all carry shame in some form. Please feel free to comment below – if we can speak it then perhaps together we can beat it!

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 https://youtu.be/cKECz_fCnFw 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

I have now written a follow up post to this one titled ‘Grapping With The Shame Having A Rare Invisible Illness‘.

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.

Here is the link again to Dr Carroll’s video.

God & Spirituality, Identity, Spinal CSF Leak

Learning To BE

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Walk with me
Let’s forget the what-might-be
And slow to now.
– Speak Brother (Slow to Now)

These beautiful lyrics are a reminder that we sometimes have to slow down enough to live in THIS moment. To not let life rush us by. To make the most of every experience and to enjoy sharing those moments with others. Forgetting the ‘what-might-be’s’ and learning instead how to ‘slow to now’ so that we can be fully present;

Today
Now
In this moment.

The challenge of learning to BE, is just that. It’s about being present now, today; whatever today may bring. To not be defined by what we do or the titles we own.

Instead it’s about being:

ME, simply me, NOW.

This is probably one of the main lessons I have been learning over the last 18 months.

To be fully present TODAY, not distracted by fighting the limitations I currently face or the unknowns of tomorrow. But instead choosing to embrace THIS MOMENT and making the most of the opportunities I have HERE.

It’s not been easy. In fact, I have probably found it harder than any other point in my life. Because when you are dealing with difficult circumstances it is so easy to miss the wonder of the small things that still surround us. And yet, I have set out to learn and change for the better. To learn how to ‘let go’ of the unknowns, even when it’s so hard and when the future can seem so uncertain.

It’s a journey.
I am still learning.
I face the daily battles everyone else faces in their minds. (Particularly those of us fighting serious/ chronic illness or other turbulent circumstances).

And yet I hope that in sharing what I am still learning that we might learn together and in that way my journey might just help someone else.

Learning to Be copy

So how do we learn to BE?
It all sounds deep, but what does it really mean?

LETTING GO

Recently I have learnt a lot about the need to ‘let go’. To realise that there is so much I can’t control that I can only let go of. To choose not to allow worry and anxiety to take over and constantly dictate my mood and behaviour, overshadowing all I do.

Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of it’s own. – Matthew 6:34*

Worry and anxiety are usually caught up in our fears of the future and the ‘what if’s’. When we allow them to take over our thoughts they pull us to a place where we feel out of control and where the future feels beyond what we can cope with. That is what happened to me during the dark days at Christmas 2015 that I write about in ‘Breaking Through the Darkness.’

Letting go is often challenging, because you feel like you are letting go of everything you can’t control one minute only to find yourself taking it back the next. It actually takes learning new disciplines of the mind to learn to replace negative thoughts and learn how to redirect them.

It can often feel like an exhausting battle. But I do believe it is possible to find ways to replace negativity with positive thoughts and perspective.

On a practical level, deep breathing & relaxation can be a good outward form of letting go that can sometimes help us to deal with the inner things. The physical action of breathing in deeply then breathing out slowly can help us to let go of some of the tension and anxiety in our bodies.

BEING GRATEFUL AND THANKFUL

“It is not happiness that makes you grateful. It’s gratefulness that makes you happy.” – David Steindl-Rast

These words are from David Steindl-Rast’s TED talk; ‘Want to be happy? Be grateful’. He talks about how we can learn to be grateful in EVERY given moment. It’s about a thankful perspective; CHOOSING TO SEE what we DO have instead of focusing on what we DON’T.

This is so important. Especially when we are dealing with difficulties in our lives. The storms in life have a tendency to pull us into them so that we can’t always see what we DO still have and the things that we CAN still be grateful for.

For me, gratefulness is often directed towards God. I daily try to thank Him for all the wonderful things in my life. We can learn to develop a daily habit of being thankful – practically we can write things down, pray about them or just choosing to focus our thoughts on them.

“I think that many times we let what should be extremely special to us—things we should be extremely grateful for—become too commonplace”. – Joyce Meyer

LEARNING TO SEE WHAT IS AROUND US

Learning to BE allows us to open our eyes to SEE more of the wonder of the world around us. To notice the beauty of nature and the joys of human relationship. We can become more aware of our surroundings. Taking time to look more deeply and discover new things.

I have walked a lot in our local area over the past few months and discovered so many new places I had never been before. Sometimes there can be beauty all around us but we miss it because of our busyness or the distractions in our mind. Some days we need to be intentional about looking to SEE what is ALREADY around us.

REDISCOVERING PURPOSE

I believe that we are all designed to have a purpose; a role in this world that only we can fulfil. Endeavours that help us to feel alive and make our mark on the world. However, ask anyone who has faced having to ‘give up’ what they love to do due to injury, illness or other circumstances and they will probably tell you how hard it’s been.

Our identity is so caught up in ‘what we DO’ that when we can no longer DO those things we can feel purposeless. It feels like our life is of little value anymore.

Scott Dannemiller writes:
“… we are defined by what we do. Our careers. What we produce. It’s the first question asked (of us)…. The implication is that if I am not busy doing something, I am somehow less than. Not worthy. Or at least worth less than those who are producing something.”

I have definitely grappled with this over the past 18 months and wrote about it in Is Busyness A Choice?.

WHO AM I WHEN I CAN’T DO ANYTHING?

It is actually these seasons that draw out the deepest questions about our identity. Who am I really? We have to search for new meaning and purpose because it is not always obvious.

I have had to learn that I am valuable without having to DO anything. I have a place in this world just being me. And whatever the limitations are, there are still so many things I CAN DO:

  • I can love others.
  • I can hold my family and speak words of love and encouragement to them.
  • I can use my words to encourage and help others going through hard times.
  • I can choose to be grateful for every blessing, big or small and communicate that to others.
  • I can keep enduring through the trial so that we can all learn through it and that those coming behind me can have an easier path.
  • I can broaden my mind by listening to other people’s thoughts and ideas.
  • I can go deeper in my faith by spending time listening to and speaking with God in the quietness and allowing His words to shape my heart, heal my hurts and reignite my hope and purpose.

FINDING PEACE AND REST AMIDST THE STORM

Is it really possible to learn how to find true rest and peace in any moment, even when those moments are stressful?

I believe it is. I write about it in this post.

We can learn to manage our emotions rather than allowing them to manage us. –Joyce Meyer

But I also believe that we have to learn new ways to deal with negative circumstances so that they don’t pull us into a cycle of negative thoughts.

The fact is physical rest is NOT always good for our minds. We DO need to rest and we certainly DO need quietness. But sometimes the silence can be deafening, especially when rest is enforced. This is because rest can cause our minds to go into overdrive. Our thoughts take over and if they are more biased towards the negative, silence can make them worse. (Think of times you couldn’t sleep because your thoughts were ‘so loud’).

So we need to have resources that help us to be still and restful and yet simultaneously focus on more positive things. Music and meditations are good. I also love listening to inspiring talks like TED talks, other people’s stories of trials they have faced, as well as teaching and inspirational messages that encourage my faith. These help me to focus my mind and gain a better perspective through prolonged rest.

Learning to Be be still and know copy

So I am again choosing to ‘learn to Be’. I am not yet fully recovered from my CSF leak journey. Whilst some of the symptoms linger I have no choice but to learn a new way of living in which I cannot DO everything I would like to do.

But instead of fighting this season and getting worn out as I did at Christmas, I have to ‘let it roll’ to a certain extent. Yes, there are many things I can do and can change that will help my situation and I need to celebrate those. But I also have to realise that there are also many I just cannot change myself. So instead of frustration consuming me, I have to learn, each and every day to ‘let go’ of the ‘what may be’s’ and ‘slow to now’ so that I can savour;

Every
Beautiful
Moment
That STILL exists HERE.

Please do comment below and share some of the things you have learned about ‘living in the moment.’ You never know, it might really help someone who is struggling.

You can listen to Speak Brother’s song ‘ Slow to Now’ here.

*Verse from the NIV translation of the Bible.  (The verse in image from Psalm 34:14 is from the NLT translation of 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.

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.

Spinal CSF Leak, Suffering & Grief

The Power Hidden In Vulnerability. 

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“We may impress people through our strengths but we connect through our weaknesses.” – Craig Groeschel

Over the past few weeks and months I have written about a current tough season I am walking through. In fact, I am not really ‘walking’ through this season. I am ‘lying flat’ through this season.

A perpetual time of enforced rest, because my body can’t currently function any other way.

I am back in hospital again for the 4th week so far in 2015. I am again seeking treatment for the CSF leak (Spinal fluid leak) I got from a fall off a ladder at the start of the year.

Having a CSF leak means there is less spinal fluid to cushion my brain. Subsequently my brain drops in my skull, meaning if I sit or stand I get a whole range of crazy neurological symptoms labelled ‘a headache’ by some.

But I am telling you now ‘headache’ is not the right term for what goes on my head (& body) when I sit or stand. 

A better term is torture! 

After a crazy past 6 weeks or so of being an inpatient in hospital for a few days, then waiting for treatment as an outpatient for a few weeks, I have now spent another full week in hospital. Lying flat all day in a hospital bed that is always on a tilt head downwards to alleviate symptoms.

I only get up briefly to use the bathroom and only sit up to eat my main meal because I literally cannot function or cope physically or mentally with being upright for more than 5-10 mins.

Before the end of February this year, I never imagined such a condition existed that was so effected by posture. I could have never imagined how debilitating a so called ‘headache’ condition could be.

I never would have thought how complicated it can be to get treatment for this unusual condition. How much you have to wait due to differences of professional opinion about treatment and theories about how well treatment works.

Five weeks ago I was meant to have a second epidural blood patch procedure in my spine as an outpatient. Following 5 weeks of disagreements between neurologists and anaesthetists I am still waiting for this treatment.

In the meantime they have tried an occipital nerve block (steroids are injected into the top of my neck/ bottom of my skull) which failed to provide any relief and medication which just made me feel awful.

This definitely wasn’t how I intended to spend most of 2015! Having always been a person to get on with life, face difficulties and overcome them, this journey has been somewhat different and definitely challenged me to the core of who I am.

I have reached a new level of weakness. 

This is a photo of me lying flat in my hospital bed. I have sunglasses on due to photophobia, but I am still just about smiling!

I was in a bad way when I arrived back in A&E a week ago for the fifth time this year. It took about 20 mins to get here in the car, so by the time I reached A&E I had far surpassed the current time I can manage upright.

So after waddling into A&E, which was packed out, scanning to see there were few seats available (which I wouldn’t have been able to sit on anyway upright) I just opted for lying on the floor. I had to cover my head to block out the light and noise and by then I was twitching and shaking.

My husband said I got quite of few looks – unsurprisingly. 

Thankfully they found me a bed and took me straight in and I skipped the whole triage thing. The fact I was still under neurology probably helped. 

It took quite a while to recover from that whole ordeal, I was so out of it, struggling to communicate, in pain and totally exhausted. I found it hard to eat or drink, which made everything worse, so they put me on IV fluids and IV paracetamol to try and help me out.

After weeks of managing symptoms at home lying down all day, I just couldn’t cope with it anymore on my own and had to resign myself to being readmitted and hope treatment would progress better as an inpatient.

Do you ever face times in your life where you feel like things couldn’t get much more difficult?  

But then they do and you have no choice but to keep on going, hoping, praying and believing that the storm will clear soon?

It’s been a tough year. 

It’s hard when you think you have overcome something to find it has come back and things seem even more complex.

“…. 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

To be honest:
I am tired of it all!
I am weary of all the battles!
I am frustrated at the delays!
I am exhausted by the crazy symptoms!

I daily think….
“Can this all be over now?
Surely I have endured enough?
It’s really got to get better soon?”

But for now, it doesn’t. 
In fact, each day of waiting it gets harder.
The simple becomes more complex.

And I am stuck in the middle of a big debate about my treatment.

Sometimes all you can do is
Hold on. 
Just hold on. 

Through the questions.
Through the complexities.
Through the battles.
Believing that there IS a way through and that it’s coming soon.   Two weeks ago my husband did his back in. In possibly our lowest ever point as a family, Matt injured his back and ended up having a back spasm so severe that he passed out.

He has always had a weakness in his lower back, but probably the weeks of strain in having to work in a very demanding job, care for me & the kids, fulfil his responsibilities at church and look after our home took it’s toll.

That moment was a very dark moment. He had pulled something in his back slightly earlier that day and tried to rest it off. Our poor kids aged 8 & 10 were trying to help us out, as I was already stuck in bed most of the day.

This meant I was trying to get up and do a few more things to help and find out what was happening with Matt (which wasn’t helping my symptoms). 

His back then went into a full blown spasm, like no other he had experienced before. In just about recovering from that he made his way upstairs and in reaching the bed his back went into such an aggressive spasm that he passed out from the pain, thankfully whilst bent over the bed.

I was trying to help him but because I had to be upright I was really struggling. As he passed out I called 999 but could hardly speak to them myself because after a few minutes of being upright my speech and ability to communicate can become a problem.

Thankfully he came round after a few minutes so we didn’t need an ambulance. I managed to get back into bed. The kids were scared and in tears because both their parents were unwell.

In that moment of turmoil I managed to call our wonderful friends (who are also our church Pastors) and muster up the strength to literally mumble what had happened, whilst in tears, exhausted and desperate.

We couldn’t cope anymore. 

They came straight away and brought calm, light and love in our dark hour.

As I have written over the past few weeks, I have already felt at the end of myself recently. Then Matt hurt his back and we were both stuck in bed for a few days before he started to recover.

Talk about vulnerability and weakness. 

I am so thankful for friends and family who helped us during those difficult days. We literally couldn’t have coped without them. 

It was a real time of embracing humility, as people popped in and out to help us and come up to see us both stuck lying in bed. Whilst they sorted out the kids, cleared up, cooked, prepared meals and generally brought love, support and encouragement. 

There is nothing like being stuck on your backs to shatter your pride and dignity. It is humiliating to talk to people whilst lying flat in bed.

BUT

There is also something wonderful that comes from vulnerability. There is a deeper power of connection that comes when you are weak. 

When there is no where left to hide.

You are just you. 

In all your weakness and brokenness.
No frills.
No pretence.
Exposed.
Vulnerable. 

Yet loved, looked after and cared for. 

That is the power of vulnerability. When people accept and love you for who you are, when you are broken, weak and can do nothing for them. 

It brings a new level of connection. A powerful moment that will not readily be forgotten. 

To be seen in weakness is to be truly seen. It is not easy. We want people to see us strong and able. However, weakness and frailty is a significant reality of humanity.

It opens the way for the deepest connections; both with other people and with God.

“Strange how people who suffer together have stronger connections than those who are most content.” – Bob Dylan

There is a deep contentment that can come when our lives are stripped back. A ‘letting go’ that has to take place. You have to lay down the reins of your life and trust that good will prevail in the end.

To be seen in weakness is to be truly seen.

You may not be the person you once were. DOING what you used to DO. LIVING as you used to LIVE. Instead, you can only BE the person you really are NOW, in THIS moment and find a way forward in the storm.

So I have again reached THAT point of weakness. A moment when you realise that in some seasons instead of fighting weakness and challenging circumstances  you have to learn to simply flow with it and say:

Let the storm rage.
Let my vulnerability be exposed. Because it is there I discover strength in weakness. 

I discover who I REALLY am
And have to learn to JUST BE ME.

Simply
Uniquely
The REAL, weak, exposed and vulnerable ME.  

“People who are real, who are genuine concerning weakness as well as their strengths, draw others to them. They engender trust. They are approachable. And they are a breath of fresh air…” – John Maxwell

To read more about my ongoing 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.

Spinal CSF Leak, Suffering & Grief

Never, Never, Never Give Up! 

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“Never, never, never give up.” – Winston Churchill

“The brave aren’t brave because they don’t feel fear. They’re brave because they pushed through it.” – Carey Nieuwhof

There are seasons in our lives where we will face a lot of discouragement and disappointments. Sometimes these knock on our door one by one. Other times we seem to face a barrage of them; where one thing after another seems to go wrong.

It feels like there are challenges and hurdles at every level. 

Each one has to be faced and each time you have to keep bringing yourself back, getting over the new disappointment and find the strength to move forward.

There are moments when despair knocks at your door. Pleading with you to let it in and yet you know if you let it in, you will also let in all the other feelings and thoughts that accompany it. Once they get a hold of you, it is hard to break free because those dark thoughts will pull you into horrible places.

It is not easy some days. You have to find the strength for each new day, each new battle, each new decision.

Sometimes all you can say (or shout) to yourself is:

“I WILL NOT QUIT! I WILL KEEP ON GOING – REGARDLESS OF HOW DIFFICULT THIS IS!”

Until you can again break through to a place of hope. A place where you can see light for your future. A place where you decide you will not let what is happening around you and to you destroy you. A place where you can gain a better perspective and will not let the bad news win!

It takes great courage and strength to keep on keeping on when the way forward is not clear. 

We had some disappointing news from the hospital this week. Following my relapse a month ago of CSF leak/ post-concussion symptoms, I was offered a second blind epidural blood patch as treatment. (I had one in March that got me back to about 70-80% normal for 5 months).

Two weeks ago I went to hospital to have this procedure, but when at last the anaesthetist was ready to call me to theatre, the day ward I was on realised that the ward would shut before I had taken the full recovery time.

So it was cancelled. 

I cried when they told me (thankfully I was wearing sunglasses due to photophobia). So I had to let my husband talk (because I couldn’t get my words out). He remains the most brilliant advocate through all this. Calm and understanding, yet strong and willing to fight where necessary.

When you have waited ten days for a procedure to help you get better, then you go into hospital, wait all day for it to happen, told they are ready for you in theatre, to then find it can’t happen after all – is really very hard. 

But we were assured it would get rearranged. So we pulled ourselves together and chose to keep waiting.

After two more weeks of waiting for another appointment (and after daily phone calls to chase it up), it turned out that the anaesthetists have changed their minds and have ALL refused to do the blood patch and instead I have been referred to the chronic pain clinic to manage symptoms. (A blood patch is an internationally renouned treatment to deal with the cause and symptoms of CSF leaks. And the treatment requested by my Neurology consultant. The problem is a lack of understanding about how they work and the diagnosis means Doctors don’t always want to take the risk with them). 

After already waiting for four weeks for a blood patch, to be told I won’t get it is unbelievably disappointing.

It feels like another ‘blow’ in a very challenging journey. 

It’s left us in a very difficult position in which we need a lot of wisdom to know the right course of action to move forward with.

I currently still need to lie down flat all day to deal with symptoms. 

Despair is knocking at the door of our lives coaxing us to allow it in.

But we WONT let it! 

It won’t steal my inner peace. 
It won’t steal my inner strength. 
I will keep on keeping on – Regardless! 

It’s hard but I won’t let it destroy my life. At every level, I am choosing hope. I won’t settle for fear, doubt, worry, anger, bitterness and blame.

As a Mum I have a responsibility to demonstrate to my kids how to face hard times and endure through them; yes – somewhat broken, but also stronger and wiser.

As church leaders Matt and I together have a responsibility to show that we can face what life throws at us and still remain full of faith and strength.

It doesn’t mean we find it easy. It certainly doesn’t mean we don’t feel weak. 

  • We get angry at the process. 
  • We daily face the frustrations of managing life with me in bed all day. 
  • It’s painful, it’s hard, we often don’t know what to do. 
  • There are tears, there is exhaustion.

But we have already decided:
WE WILL NEVER, NEVER, NEVER, GIVE UP! 

“Leaders are teaching others how to handle pain at the exact moment they are learning these lessons themselves. The pain is felt and the lessons are taught in real time.” – Samuel Chand

Despair, anger, frustration, hurt and worry come against us. Telling us their pitiful story of how terrible our life is and how hard this is for us.

But we have learnt and will continue to learn how to stop these thoughts as quickly as we can.

It’s not easy, but it is possible. 

“….let God transform you into a new person by changing the way you think.” -‭Romans‬ ‭12:2‬ (The Bible)

We will not allow our perspective to be dragged down to the smallness of our current circumstances. We choose to look beyond this. To find purpose within the pain. To remember what we do have to be thankful for.

And when we don’t have the strength to fight, we know that God will carry us. We know that we have people around us standing and fighting with us and for us.

We are not alone and we will ENDURE! 

Endure: To carry on through, despite hardships; (The Free Dictionary).

We endure each day by facing and finding the strength for today. Not getting bogged down by what may happen tomorrow. If we look too far into the future it can overwhelm us.

“Worrying is carrying tomorrow’s load with today’s strength- carrying two days at once. It is moving into tomorrow ahead of time. Worrying doesn’t empty tomorrow of its sorrow, it empties today of its strength.” -Mother Teresa

This is the hardest long term battle I have faced in my life. 

It came out of nowhere and suddenly tried to take control of my life. My story of this year will always be a part of me but I will not allow it to consume everything in me as well.

I am not a diagnosis. I am Becky Hill who is having a challenging year fighting a complex diagnosis. 

I WILL come through this. However long it takes. I WILL get better.

And in the meantime I intend to travel through it as well as I can. Make the most of every opportunity. Do what I can do and not despise what I can’t.

Learn
Grow
Inspire
Lead
Live
Teach

Regardless! 

My life does not only consist of what happens around me. We cannot always change what happens around us or to our bodies. But what has happened won’t take me inside. In my heart, my spirit, my thoughts. 

So even when my body is weak (weaker than I have ever known). Even when physically my strength is limited.

My spirit can soar. My heart can sing. I will do what I can to still build myself up, stay encouraged and inspire others in the process.

I have to fight for the right perspective on foggy days.

But I will overcome. 

It will change me.
But good will come from this.

I will not allow it to take me down! 

“Endurance is not just the ability to bear a hard thing, but to turn it into glory” – Philip Yancey

Can good things come out of your suffering? What could you do to find purpose amidst pain?

Thankfully after finishing this post we got some better news from the hospital. It’s by no means clear cut but there is a bit of a way forward now. We can always hold onto hope and faith. 

To read more about my ongoing 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.