Tag Archives: chronic pain

Rising Again: My Year Of Spinal CSF Leak Recovery

“Time is not really spent. Instead, it is invested in a future we cannot see.” – Alicia Britt Chloe

When I read this quote recently in Alicia’s book ‘Anonymous’ it resonated with my perspective on life. Our time on this earth should not simply be ‘spent’ and should certainly not be ‘wasted’. Instead, all of our time is an investment for a future we cannot yet see – whether it’s intentional ‘learning or doing’, time invested in family and relationships, or facing a set of circumstances which force us to use our time in a new or unforeseen way.

If we can see like this, then we can know that nothing needs to be wasted. Everywhere our life takes us – both the good and bad – is an opportunity to learn, grow and invest into who we are becoming. It’s also an investment into who those we parent, lead and influence are becoming.

All life’s circumstances are opportunities to invest in the future – whether it’s ours, or others around us.

That’s how I’ve had to see the last four years of my life. Most of the first three were spent battling a debilitating spinal CSF leak, and the last has been all about investing in my recovery. Which has again required great patience, raw resilience and immense endurance.

The pathway of recovery, after a long term spinal fluid leak, is often a long, arduous and immensely slow process – even after successful treatment.

The wonderful news is that – a year on from my successful 4th blind lumbar (40ml) epidural blood patch (EBP) – I am doing comparatively well. I have been upright all day every day since mid December 2017 (some days recently that is from 4am – 11pm!! If I happen to wake up early and have to get up due to ‘lying down’ headaches).

I can walk for miles, happily drive locally, get a lot done at home and look after my children (now 11 & 13). I can cook & bake for our family and others, spend quality time with people, go on holiday, and invest increasing time in my life-calling of pastoring and helping hurting people, in and through our local church. This is currently mainly through a lot of one-to-one mentoring and personal development time with others, as well as teaching in small group settings. I also do bits of admin for our church. Thankfully this is all flexible and I can do what I can, when I can, without any added pressures.

I have so very much to be abundantly grateful for. Last year I was acutely unwell and utterly debilitated – initially by the spinal fluid leak, then subsequently by severe post-treatment rebound high pressure symptoms. For four months over the summer of 2017 I had to lie down flat nearly all day, every day, and could only manage an exhausting 10-30mins upright at a time. Then after my EBP I just had a pretty much constant debilitating non-positional headache – amidst many other symptoms (as I talk about in this post) – for months. It is hard to explain how extremely unwell you are with both those conditions, and how confusing it is to work out which is which after treatment.

They are both truly awful to endure!

The road to full healing, even after successful treatment, is not an easy one at all. After a while, you can see that you are making some progress – albeit slow – in moving up the mountainside from the darkness of the valley below. But even the mountain climb of recovery is utterly exhausting in so many ways. It continues to take so much endurance, patience and resilience to scale the never ending rocky slopes.

But I am getting there….

In the light of how ill I was for so long – I am doing exceedingly well! I haven’t been this well since my accident in January 2015. In the light of how healthy and busy I was before my accident – and the onset of the leak – I am still not fully well. But I’m increasingly heading in the right direction.

How ‘well’ I am now is all a matter of perspective. I have to keep focusing on the wonder of how far I have come and the fact that I can easily be upright all day, which is a small miracle to me. So I must embrace all I can do – which is comparatively a lot – and not resent or get frustrated with what I can’t!

The slowness of my recovery can certainly feel frustrating at times – to say the least. Who doesn’t want to get back to full health and be able to embrace more of the life they once knew? And yet I’ve begun to learn and see more of the wisdom that can be found in the slowness. It’s not just my body that needs to heal physically – I (and my whole family) have needed to heal holistically, in so many different areas.

Having lived with a chronic debilitating neurological illness for years, and then experiencing the slow process of holistic recovery, I believe in some ways the whole journey through illness, healing and recovery can be viewed in a similar way to grief. It’s a journey, a passage, we walk through. It’s not something we experience one day, then ‘get over’ it the next. It lives with us as we attempt to move forward with our life. We have to wholeheartedly face, embrace, and walk through what we discover on the journey of sickness and healing – whether traumatic, painful or beautiful. We must give it the time and attention needed to move ‘through’ it, as well as we can, and find more lasting healing in every way.

My mind, emotions, memories, and soul need healing just as much as my physical body. They have needed to find increasing restoration, fresh confidence and new freedom.

You can’t ‘rush’ holistic healing!

It’s a process of working through complex and traumatic memories, emotions and thoughts. Unless you’ve walked the spinal CSF leak road, or a similar long term debilitating illness, you may not understand the trauma involved at every stage. Simply the daily holistic trauma of living with the illness itself is enough. When ‘leaking’, simply being ‘upright’ is often utterly traumatic for our bodies, brains and minds. Then add in the trauma of trying to seek medical help and support for a condition that very few doctors really understand (IF you can get diagnosed and ‘believed’ – that is). And add to that the mental and emotional trauma of being so debilitated and unable to function, anything like normally, in the short and long term. With this combination you can see that there is a lot to work through – as I write about in one of my most widely read posts, Living With a Spinal CSF Leak.

Sometimes it’s not until you start getting well that you actually realise how exceedingly unwell you truly were for so long. This is traumatic in its own way. The fear of going back there again can be overwhelmingly crippling – especially in light of how long recovery takes. This isn’t helped when, like in my own case, multiple major relapses have been your very real past experience. Moving on from the fear of relapsing again is so very difficult. True freedom from this fear can only come slowly, as your confidence builds with the longer you go without getting worse again. These fears can also leave us completely confused and unsure of what we should allow our body to do or not do.

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On a purely physical level, I have also discovered that, after years of leaking spinal fluid from your spine, your whole nervous, and intracranial pressure, system seems to be completely messed up!! Over the months and years of leaking I have become hypersensitive to even the smallest pressure changes in my head and spine. These physical ailments added immensely to the struggle to cope with even small amounts of stress and anxiety whilst leaking and during recovery. This is due to stress and anxiety naturally affecting intracranial pressure anyway, meaning that the physical, mental and emotional become even more intrinsically linked. Even more so because any heightened emotion, especially crying and laughing (or raising your voice in excitement, passion or anger), are brutal on our already hypersensitive heads.

I found the only way to try and deal with all this was by learning to stay as calm, peaceful and quiet as possible. (I already experienced this from leaking – as can be read in this article). This means we have to avoid stressful and anxiety inducing situations when we can – whilst ‘leaking’ and especially in the early months of recovery – which is not easy when we are trying to holistically manage and recover from a debilitating illness, still have to deal with medical professionals and hospitals, and have a family and home to look after (at the very least). It would be even harder if I had had to try and go back to any of a massive spectrum of jobs and careers which do not allow an abundance of time for calm and quiet individual activity. I cannot ‘multi-task’ anything like I used to be able to. Such things are still often way too overwhelming for my current cognitive capacity – although still obviously improving. Even now I also still struggle to ‘rush about’, especially in ‘busy’ or ‘bustling’ environments (even more so if I have to talk to and interact with others as well) so I have to try and maintain more order and calm throughout my life than most people.

Initially, even simply doing more ‘normal’ things again – like going to shops or being in an environment with lots of people – can induce anxiety. As it would for anyone recovering from a long term, previously debilitating, medical (especially a neurological condition). However, this then perpetuates itself because we are already so hypersensitive and thus prone to such things. These environments are already ‘taxing’ on our ‘foggy’ heads because of all the overload of mental stimulation. But having to interact with people and talk a lot can also soon leave our heads even more full of pressure and thus struggling to concentrate and cognitively process what is happening and how we need to respond. So we have to be careful about how much we subject our heads to.

This unfortunately meant I often found myself ‘avoiding people’ at times – especially for the first few months of recovery. This was truly heartbreaking for me because I really do love people and like to talk to them about their lives. But talking, for even short periods of time, would simply make my head worse. Although this has very much improved overtime, my head getting worse from simply talking can still regularly be an issue.

The other key problem with our recovery is that to improve our physical conditioning we have to exercise. But exercise involves exertion, which is another trigger for the higher pressure hypersensitivity. So again it’s a vicious cycle. After the first awful couple of months post-treatment when I still couldn’t walk far at all, I subsequently found that gentle, and initially slow, walking often helped my head more than trying to rest lying down or reclined. Since early December ‘17, I decided to keep my body upright all day and quickly increased the amount I walked up to an average of 3-5 miles a day over 2-4 separate walks. The walks started off very slowly – but my pace slowly increased as my head and spine improved. Long walks – alone – also gave me, and still give me, the much needed space to calm and relax my body and mind, as well as improve any anxiety and my general conditioning. Walking is also very liberating after the many months over the past few years I couldn’t really leave the house.

I did discover that walking was much easier on my head if I walked quietly (or normally listening to something uplifting, inspiring and calming on my smartphone) on my own. Due to the increased breath use – walking and talking at the same time are more of a challenge. I can walk much further more easily on my own than with others. Similarly, I can also get more done at home when I am not required to talk at the same time. Moving about a lot and talking (especially more loudly) can be a bad combination for my head. Although this slowly gets better over time.

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Other ongoing physical symptoms include varying head pressure often felt mostly in the lower forehead and especially around and behind the eyes when worse. (When particularly bad it can feel like your eyes might burst out of your head). But I can also feel pressure in the occipital region (bottom of skull/ top of spine) and down the spine (especially in the lower lumbar spine). But it’s a slightly different sensation to ‘low pressure’ (leaking) occipital/ neck ‘pulling’ headache. Although harder to differentiate in the early days of recovery.

The main difference that slowly becomes clearer (after much initial confusion) with this ‘higher pressure’ type of pain is – rather than increasingly getting worse throughout the day (or even over a short period of time being upright) – like it did when obviously leaking, it tends to instead come and go at various points in the day according to what is setting off the ‘hypersensitivity’ at that time. Even now, it can still get worse until my head feels full, my ears crackle and pop and sometimes it makes me yawn a lot and feel rather sleepy – especially due to the pressure behind and around the eyes. It can also make me feel slightly shaky, rather detached from the real world, my vision can get slightly blurry, my cognitive processing gets a bit more sluggish, I can occasionally feel a bit nauseous (in the early weeks after my EBP it could often make me physically gag) and my heart can beat noticeably faster. Hence adding to an ‘anxious’ feeling. But this normally gets better again if I spend some time staying upright but being quiet, calm, keeping my spine straighter and move about more gently and slowly. If it gets too bad – often a quiet walk or sitting quietly for a bit helps.

The other main difference to ‘low pressure headaches’ is that it doesn’t get better lying down – although lying down may still rest your body somewhat – hence the confusion. I never lie down in the day anymore because it tends to make my head worse. However, all of these kind of reactions mentioned above are slowly getting less acute or intense and much more manageable as recovery improves.

Waking up in the mornings can also still be problematic at times because of the lying down. I still often (most days) have increasing headaches around and behind my eyes and in my lower forehead, and can sometimes feel slightly nauseous soon after I wake up (this is especially prominent if I try and stay in bed too long once awake). Unlike when ‘leaking’ – I subsequently find that I must get up once I have been awake a little while – whatever time it is. I am known to get up anytime from between 3:30am-8:30am depending on the day and when I happen to wake up (unless the 6:30am alarm on school days wakes me first). Once I do get up the main headache goes away quite quickly these days – although my head and spine can remain feeling strangely ‘full’ but without obvious pain. (In the initial weeks after my blood patch, the headache wouldn’t always ease much getting up – at least at first. I think the exertion of getting up and interacting/ talking with my family would complicate it and I could often feel very unwell and often feel sick and gag from trying to ‘do things’. So then I would then try and lie down again to be still and quiet – but would end up still feeling very ill and then simply continue to physically gag from the nausea and increasing pain from lying down (which simply adds to the exertion headache – perpetuating everything). It’s tormentingly confusing and very hard to get relief in any position in the early days of recovery. Medication (initally acatezolomide, then after 2 months a switch to nortriptyline, in my case) can help some of the underlying problem or pain. But not necessarily the hypersensitive reactions to changes in intracranial pressure. Which is why it is so utterly confusing and brutal on your mental health – which adds to the anxiety we are already prone to – as I write about here in my 6 month post patch update).

Bending my neck down to read, whilst walking or to look at things (like my smartphone), or bending my spine to do things – tends to also obviously increase the pressure in my head and make my ears feel full and pop. As does carrying moderately heavy things. So I am still super careful and gentle with movements involving my spine. I just can’t be sure that it’s OK to lift and bend much still, so I still self-impose many post-EBP style restrictions and tend to always kneel first to pick things up off the floor, unload the dishwasher or put washing in, or take it out, of the machine. Over time I have gently allowed my spine to bend and lift a bit more – but only very carefully and cautiously.

During my years of leaking and my experiences of rebound high pressure (post treatment) I always found sitting down would tend to increase the pressure in my head/ spine or increase my leak symptoms when leaking. So I used to stand a lot more when upright. This has improved so much and I can sit for longer and longer, but it is often still harder for me to sit (relaxed) for longer periods of time (the sofa can be the worst place due to the softness of the seat). I actually find I am better sitting with my back very straight and legs bent directly in front, with the soles of my feet touching the floor. Slouching, leaning back too far or putting my feet up is no good, at all, for my head or spine.

I know the sitting issues have also been aggravated too by the general ongoing tension up my spine. I personally hypothesise that much of this is probably down to the higher pressure/ higher volume of spinal fluid pushing against my nerve roots. But it’s obviously also linked to the years of pain and physical tension in my head and spine and also the lack of natural movement. It’s hard to know how to combat this much whilst still restricting movement. It improves little by little and lots of walking and the general rehabilitation of doing things around the house and going shopping (limiting how much is carried) etc helps it a lot, thankfully. But I have found that this can’t really be overcome by trying to ‘force it better’. Gentle movement and gentle lifting, whilst remaining very patient with regards to ongoing ‘pressure issues’ is so important. I just have to listen to my body and head. Trying to ‘push myself’ and rush this process of less pain and tension in my head and down my spine can just lead to relapse and in hindsight has probably contributed to my own before.

(In hindsight, I now think that I experienced rebound high pressure symptoms at least after my second (11 months post leak onset) and third blood patches (15 months in – when I was also treated with acetazolomide) but I always got worse again many weeks to months later. I do not know if I was also still leaking a bit too after any of my patches (apart from a bit after the first perhaps) or what exactly brought on the consistent obvious major relapses. (Apart from when I fell over again badly in May 2017). I always got much better after blind lumbar high volume EBP and could spend much more time upright – often all day – over the following weeks and months – but was never symptom free. But it’s all FAR too confusing to say for sure and the confusion only gets harder the longer you have been leaking. Medical professionals in the UK normally do not understand these medical conditions enough to support you well eitherWhich makes living through it immensely hard and another challenging battle to fight, whilst you are utterly exhausted and acutely hypersensitive to stress and anxiety anyway. This all contributed to a major crisis in my own mental health (see Breaking Through the Darkness), including acute suicidal ideation, 2 months after my second EBP. This almost reoccurred again 2 months after the 4th patch that sealed me, as I try to describe in my 6 month post patch update). 

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However, regardless of all the immense and overwhelming challenges of living with a ‘leak’ for so long and now enduring the slow recovery process…

There is still so much from the past few years to treasure!

So it’s that which I want to focus on to finish…

Beauty can become even more beautiful once you have tasted of deep pain and debilitation – a theme that I wrote about in ‘Suffering into a Deeper Spiritual Awakening’. I have certainly learnt more about what truly matters in life. I see and notice beauty even more clearly around me – throughout creation and in other people. My heart is so much more tender and compassionate. I truly FEEL others pain much more deeply than I used to. My understanding of other people’s struggles is so much more profound.

If I could go back and had the choice to have or not have the leak – of course in so many ways I wish we had never had to walk through such an awfully traumatic and exhausting season in life.

And yet…

I would never want give up the beautiful lessons learnt or the wonderful people met. I could not deny the privilege of experiencing the depth of the valley of darkness – whilst actually being able to rise and recover again, as I hopefully increasingly move up towards more heights of better health. It has changed and increased the capacity of my heart in ways that I cannot even begin to fully explain. It has stretched my limited perspective and expanded my horizons. It has changed how I see and relate to others and deepened my love – for God and all people.

So with hindsight would I choose to personally go through such a desolate season of pain and suffering – because of what can be learnt and gained?

If I could have known, in advance, what the never-ending, deeply dark, valley entailed, I could not have chosen that road for myself or my family. Nor would I choose for anyone else to go through it either. Which is why I continue to raise awareness about the realities of living with the condition. In the hope that others will not have to suffer as deeply and as long as I have.

But… I would choose the new heights of beauty discovered in and from the depths of pain. Because they have transformed me for the better. They have brought holistic growth and resilience in ways I could never have achieved without going through such a raw deep struggle. I have also been able to connect and help others going through the same hell that I had to.

I have honestly been utterly shattered and broken by the past few years – in so many different ways.

And yet…

To be ‘broken and shattered’ is not always a bad thing long term. It strips you back, shows you what is truly important and gives you a new perspective on life and love. We can then hopefully one day, perhaps one day, become even more stable, loving, humble, understanding and holistically healthy people in the end. Until we can truly see that the years of pain become an investment for a better future – all round – that we previously could not see.

So for all those still suffering immensely with these awful conditions. I honestly feel the depths of your never-ending pain with you – but please take heart! And do not give up hope! Last year I wasn’t sure I could or would ever be well. I wasn’t sure that I had the strength left to make it through another day of fighting on so many different levels. I had again reached the absolute end of myself. But my journey shows that we really do not know what tomorrow might bring. That is why I have wanted to tell you my own story. In the hope that we will keep holding on and hoping for a better future – we cannot yet see – together.

“Only if you have been in the deepest valley, can you ever know how magnificent it is to be on the highest mountain.” – Richard M. Nixon

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Our family on a beautiful and very blessed holiday (fully upright!!!) in Weymouth, UK, July 2018! (Which we had to cancel in 2017 due to a complete relapse of my chronic spinal CSF Leak). Our children Aimee and Beth were 7 & 10 when this nightmare began and our lives completely changed, they are now 11 & 13.

Please do comment or ask any questions below. Or alternatively you can email me at beckyhillblog@outlook.com

To read more about my story of living with and recovering from 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. 

Please see this 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 3 year battle with a spinal CSF leak. This kind of misinformation caused many delays, misunderstandings and great distress on my already immensely long winded and difficult medical journey.

Suffering into a Deeper Spiritual Awakening 

“Any great calamity in the natural world – death, disease, bereavement – will awaken a man like nothing else could and he is never the same. We would never know the treasures of darkness, if we are always in the place of placid security.” – Oswald Chambers

If you have ever faced pitch black darkness – you know how hard it is to get around. In that place, if you want to get somewhere, you will have probably also experienced the desperate longing to discover more revealing light.

We tend to fumble around in darkness, utterly lost and insecure about where our feet should go. We have to move so slowly. Feeling our way around and through. Hoping to find a flicker of light, some moonlight, a torch or that revealing light switch that should instantly show the right path ahead.

In pitch black darkness, we all know that we must move towards a source of light to find a way out.

I can still vividly remember being on holiday in Menorca years ago – when our kids were small. We were staying in a small villa, which had shutters and at night was pitch black. One night, one of our small girls screamed out after having a nightmare and I literally jumped out of bed, half asleep. I instantly felt completely disorientated and enveloped by the confusion of the darkness around me.

Where was I?
How could I reach my screaming child?
Where was that light switch that I desperately needed?

In the pitch black, fear and anxiety often overwhelm you. Especially when you face the urgency of trying to get to your screaming child. In that moment I felt completely and utterly helpless as I felt the walls, trying to recall where that light switch was.

Eventually – after fumbling around for ages – I found that precious switch. With it came a stilling burst of light. My panic began to subside as I could see the way to reach my distressed little girl in her own room. And as she felt my presence in the light, as I held her in my reassuring arms and listened to her describe her scary dream – I was so thankful for that light.

The same is true in our lives.

Times of deep darkness disorient us. We can panic and become anxious as our way forward is hidden. We might fumble about trying to find a source of light to make the path ahead clear. We can feel desperate – longing to discover even a flicker of light.

Darkness quickly feels enveloping and all consuming. Its black fog often starts to seep into every area of our thoughts, emotions, actions and lives. We can’t seem to shake it off. Its mist covers everything we do. Until we feel like we are slowly being sucked to its desolate and empty core of despair.

And as it does… the desperate longing and need for light increases and intensifies every hour of every day. Until we know the flicker of a flame – ‘a little hope’ – is not enough anymore to guide us through the dense fog we are immersed in. We need a more powerful light – a more ‘substantial and secure hope’ – to get us through and illuminate, reveal and secure the path ahead. 

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But it is also in the ‘deep darkness’ that the ‘treasures of darkness’ are waiting to be found. For it is only in that place that we truly see how much we long for and need the light to survive. It is only when our eyes are blinded by the darkness that we fully realise the depths of our desperation and longing for the light to again truly SEE!

The past three years, or so, have been the hardest physical, mental, emotional and spiritual challenge of my life. My journey through an utterly debilitating chronic illness following my accident in January 2015 left me feeling more broken and weak than I ever have before.

And yet…

I have increasingly discovered that ‘broken and weak’ is the avenue God uses to draw us more deeply towards Him. It is in true human desperation that we realise how little strength we really have alone. Weakness, and the subsequent new level of humility it can usher in, is always the path to discovering just how deeply we need God.

But the stark reality is – the intense journey of brokenness is truly a painful and raw place to walk. Where layer upon layer of self-sufficiency, self-security, self-identity and self-confidence are brutally peeled away. Leaving us more and more exposed in our human ‘naked’ vulnerability and fragility. Even as you begin to tentatively emerge and ascend out of the valley of deep darkness, you can still feel very battered, bruised and disorientated from the utterly exhausting and often overwhelming fight.

Finding your way through the darker valleys of life, although intensely difficult, can also be an exceedingly beautiful journey; as your heart is softened, opened and humbled like never before. IF – and only IF – we truly invite God into the hidden depths of our vulnerability and pain.

It is only then that we discover and SEE the light of His love,

More intimately.
More stunningly.
More remarkably.
Than ever before!

“The Lord is close to the brokenhearted; he rescues those whose spirits are crushed.” – ‭‭Psalms‬ ‭34:18‬ ‭(The Bible)

It has not always been easy on that relentless journey through life’s darker valleys. There have been moments of anger at God. Thoughts of betrayal. So much lack of understanding about what was really going on. I have had to wrestle through intensely difficult questions and thoughts.

I needed to ‘discover more of God’ in a FAR more real – and yet gritty – way. 

I have also had to come to a deeper acceptance of the fact, that we all currently live in a ‘broken world’. And that it is probably not going to change, for many of us, any time soon. 

The world was originally created perfect, with God, humanity and creation living in perfect Shalom’ (peaceful) completeness, wholeness and harmony. But ever since humanity decided to do things ‘their way’ rather than the ‘Creator’s way’ in the garden of Eden. The ‘completeness and harmony’ of creation has been fractured and has been subsequently breaking down & slowly falling apart. Sickness, disease, genetic deformity, natural disaster, selfishness, rebellion and pride all entered the world as a consequence of that ‘fall’ and separation of humanity from the Perfect Designer of the universe.

It doesn’t mean God wanted me – or any of us – to be sick. Or that He caused me to fall that day to teach me a lesson. Sickness is just part of our broken world that is groaning to have its ‘Shalom’ completeness restored. God wasn’t the ‘author’ of my sickness, but He does promise to work with our fractured creation and turn it around for my good.

“And we know that in all things God works for the good of those who love him, who have been called according to his purpose.” – Romans‬ ‭8:28‬ ‭(The Bible)

Over the past few years I have increasingly ‘groaned’ alongside the whole of creation for the ultimate redemption and restoration of the Shalom. Matt and I have also never been more aware of the deep, yet at times exceedingly painful, tension that exists between the ‘now’ and the ‘not yet’. Between God’s perfect kingdom and the current world in which we live.

This life is our ‘in the meantime’ life…

Yet the promise is that we can also begin to increasingly experience the ‘not yet’ perfect kingdom of God – His Shalom – in the ‘now’ through Jesus Christ. Jesus broke into His fractured creation to reach broken humanity. He came to live in the centre of the tension – as one of us. To see and then experience the deepest and most painful suffering here – to bring the ‘not yet’ of God’s glorious kingdom into the broken reality of creations ‘now’.

God’s complete ‘Shalom’ (perfect, whole life, restoring, enveloping peace) is what we ALL yearn and long for in the depths of our spirits and souls. Especially in the midst of suffering. But it is not just a ‘fuzzy’ feeling of ‘inner peace & calm’.

‘Divine Shalom’ – is so much more!

It is the stillness of our entire being – even amidst the storm. It’s illuminating light – even when everything appears dark. It’s the divine ability of undeserved grace – displayed through our human weakness. It loves us whole – in the reality of our brokenness. It is perfect completeness – in the midst of our imperfection.

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It’s so very hard to explain to you – with simple words – what has happened to me spiritually over the past three years. How can mere words describe the indescribable?! The only way I can explain it to you is that it was a profoundly deeper ‘spiritual awakening’.

I now SEE with new eyes.
I now HEAR with new ears.
I now FEEL with a new heart.
I now THINK with new wisdom.

My own human ‘nakedness’ of weakness and vulnerability has been exposed and uncovered to a much greater depth. And it was in that place that I found more indescribable divine Love waiting patiently for me. It was as if, all the way through my journey of brokenness and pain, I was being drawn further to seek and discover, being taken deeper to search and find.

It was only when I saw and felt the depths of my weakness and inability that I experienced the glorious wonder of His strength rising up within me. It was only as my self-reliance was brutally crushed by my inability to cope, that my dependency on Him grew so much stronger. Until from deep within the broken clay jar vessel of my life I cried out to the one who created me…

“Make me whole again Daddy.
Then shape and fill me anew, Holy Spirit.
Mould me into Your Divine image Jesus. 
Nothing else really matters… All I need is You!!”

I had again reached that intimate place of deeper surrender. 

When the darkness intensifies – our need for light increases. When blindness envelopes us – our longing to SEE truly grows. When our inner being is parched and empty – our spiritual hunger and thirst becomes more desperate. When the world can only offer silence – our spiritual ears long for His eternal song.

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When trying to describe spiritual – awakenings, encounters or experiences. We often use ancient images, words and metaphors. That to some might sound ‘cryptic’. To others may be simple ‘poetic words’. But to those of us who have truly tasted and experienced the eternal immeasurable love of God – Father, Son and Spirit. To those who have discovered Him waiting for them in their deepest brokenness and pain. To those who have seen His mesmerising light in the darkness. To those who know they cannot live without His beautiful grace…

Such words truly connect with the deepest longings of our hearts. Desires that we know nothing in this world can even begin to satisfy.

I wrote these words about my recent struggles to inspire us today. So that – together – we can again perceive the divine call to our souls – in the midst of suffering – to stretch further, to reach out deeper and uncover more of the dazzling light of His Truth, that will enable us to SEE and experience more of …

…the stunning, transcendent, everlasting – yet intimately personal and experiential – Triune GOD

Who is pure unconditional LOVE.
The Author of undeserved GRACE.
And the central beating heart of the perfect infinite SHALOM.

“If I find in myself desires which nothing in this world can satisfy, the only logical explanation is that I was made for another world.” ― C.S. Lewis, (Mere Christianity)


Click here for a great video explanation of the Hebrew word ‘Shalom’

For more posts about my three year battle with a spinal CSF leak – please click here or click on the CSF Leak tab at the menu above.

Grappling with the Shame of Having a Rare Invisible illness

“Shame is a soul eating emotion.” – C.G Jung

In 2016, over a period of a few months, I came to realise how much shame I was carrying because I was still unwell, over 20 months, after a ladder fall left me with a debilitating spinal fluid (CSF) leak, somewhere in my spine. I write more about that journey of learning about shame and the devastation it can bring in this post ‘The Shame of Chronic Illness and Pain.

It was a journey of realisation and revelation following researching and contemplating what SHAME actually is and how damaging it can be in our lives. I was inspired to think about shame following reading Brene Brown’s book ”Daring Greatly: How the courage to be vulnerable transforms the way we live, love, parent and lead.’ The book encourages us to find the courage to be honest and vulnerable about who we REALLY are. It also talks a lot about shame and how destructive it can be in our lives and relationships.

“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

Reading the above words inspired me to write publicly about my realisation that I was carrying a lot of shame about the fact I was STILL very unwell. This had been made so much worse by the many battles to get properly diagnosed and then treated. Which many who have rare illnesses/ diseases can face. That includes many of us suffering from CSF leaks whether caused by an accident, purely spontaneous, from a labour epidural, C-Section spinal, a lumbar puncture or other medical procedures such as spinal surgery.

Many of us have faced doctors who have disbelieved us, or at least, disbelieved how bad our symptoms and pain are. We have been on a journey of misdiagnosis and seeing various different medical professionals, until finally finding doctors who understand and can help us. (When you do finally find those doctors they are valued, appreciated and loved more than they will ever know.)

And it’s simply because many doctors do not know much about CSF leaks. In the end, when we do get diagnosed, we are often told how ‘RARE’ we are. Although recently, it is becoming clearer that we are not actually as rare as people once thought – just commonly misdiagnosed, or even ignored, in the past.

Fighting to be heard when you are so very unwell is utterly exhausting and often completely overwhelming. Fighting your case when you are healthy is hard enough. But fighting when you are sick can be an utterly demoralising, shame filled, journey that can leave you with a potentially deeply dark despair. Especially when you are no longer confident that ANY Doctor will really listen and learn, what they need to, to help you.

Shame is that feeling of ‘I am not enough’ or ‘I am not good enough’. You can feel like a failure – not necessarily because of something you have done wrong, but because of who you are, or because of the circumstances you find yourself in, often due to no fault of your own. Sometimes simply because you have a medical condition, or something in your life, that most people just do not, or even refuse, to understand. You feel embarrassed, ashamed and humiliated and can then wonder if there is something really wrong with you as a WHOLE person. You think ‘perhaps I am just not ‘good enough’ or ‘strong enough‘ to do this, why can’t I ‘be and do better’ than I am doing… why do they not understand and listen?’

…. and SHAME begins to relentlessly and often unknowingly eat away at you!

Shame really messes with your mind and emotions and brings a whole spectrum of reactions from – hiding away from other people and getting lost in your own failures and problems – at one end – to getting angry, blaming others and lashing out, for the feelings you have – at the other. And often then trying to cover up your shame by pretending and putting up a front – in between it all. Sometimes we deflect the shame by blaming someone else. But often the fact is, whether or not someone else has directly or indirectly added to or even caused your shame, the soul destroying emotion of shame is still owned by us and we are the ONLY ones who can truly face it and deal with it.

Whilst we simply blame others for it, we won’t be able to get free.

Shame quote 2

I really do believe many chronically ill people, particularly those with a rare condition or invisible illness, can carry a lot of SHAME from their difficult journey to be heard, supported and helped.

Shame…… that we are ill in the first place and can’t ‘overcome it’. Like other people can with ‘normal’ or less severe illness, and sometimes even more severe cases that can be more easily fixed or treated.

Shame…… when you know the doctors AND even sometimes members of your own family and friends are wondering if it’s ALL or at least PARTIALLY ‘in your head’. When the reality is your body is not actually functioning anything like how it should.

Shame….. that however much you try to engage with life, and ‘push through the pain’, you are still so exhausted by it. It daily feels like you are running a marathon after being whacked round the back of your head with a baseball bat. But you are also very conscious that you do not want to keep sounding like you are complaining and being negative. So you try to smile and chat ….so in reality many people often do not know or really understand how unwell you actually are. Until you have to leave and retreat due to the immense pain and inability to cope with the trauma in your head and body, so as to HAVE to get back to relief of lying flat again.

Shame…. that even when you ‘look well’ in reality nothing has really changed since last month when you ‘looked well’ for those couple of hours, or so, you managed to be ‘upright’ and out, or with others at home (even though in reality most of that time your body was actually screaming at you to get flat again so your brain could get back into its right position in your skull).

Shame….. when tests and scans come back negative and do not correspond with how severe your symptoms are. So you lack the clear, non subjective, medical evidence you need to ‘PROVE’ to others how unwell you are. (Although even having evidence does not necessarily always help and does not always correspond with how bad your symptoms are anyway).

Shame.… when someone asks you how the ‘headache’ is and you really want to scream at them “it’s not just a headache!!! Please stop just calling it ‘a headache’!! It’s a complex and debilitating set of neurological symptoms, pain and a feeling of trauma throughout your whole body which gets increasingly worse when I am upright until I cannot cope anymore.”…. But you instead calmly reply ‘yes, it’s still there!!’ (And has been for over two years …. every day…. most of the day…..when I am actually able to be upright).

Shame.… for the daily feeling that your life is currently so ‘small and insignificant’ because you can’t DO very much anymore. So you no longer feel like a fully functioning member of society. And can’t even fathom what a day with no pain and symptoms feels like any more.

Shame…. that you have to spend so much time in bed, because with spinal CSF leaks the only time you feel fully well is lying FLAT IN BED. (But it’s out of necessity – NOT a relaxing lie in… at times my bed can feel more like a prison than a retreat).

And the shame can pile up….

….shame….
upon shame.….
upon shame …… upon shame!!!

After every new appointment, after seeing ANOTHER doctor who doesn’t understand, after every test that comes back clear, after every social event you have to miss, after every month you can no longer work.

…and after…

Every person you have to tell every day, every week, every month, every year that you are STILL not well and there is still no clear end in sight!

Shame quote copy

I found so much freedom from that shame over the last year. But sometimes something new brings it back to the surface. It creeps back up on me again and attempts to sink it’s toxic claws into my thinking and emotions. I then realise I still have some underlying shame there …. or at least it’s destructive sticky residue is lingering and refusing to leave.

So as Brene Brown advises, I am again choosing to speak it out in this new post. And to say to others – “I feel your shame too, I feel the exhaustion of the fight, I feel the anguish that the nightmare seems to never end and the chaos it’s brought in your family and relationships.”

Every time I read about another suffering soul facing ANOTHER exhausting battle to be heard – I feel that despair with you!! I have been there, I have walked, and still walk, that never ending road of endurance. An endurance you are not always sure you will still have the strength for tomorrow.

A road I did not choose myself, but wake up to every morning – with no other option than to get up and face another unbelievably exhausting day of trying to LIVE LIFE with relentless debilitating  neurological pain and stiffness (head and spine), brain fog, mental and cognitive fatigue and impairment, body and limb weakness, vision issues, tremor, shaking and much much more. And have to dig deep daily to CHOOSE calmness, kindness, thankfulness, love and hope DESPITE it all!

Which is not easy!! 

I have also known the darkest of nights when you convince yourself that escaping life itself must be better than living it like this…. and then ALSO then felt the shame of being the one who ‘couldn’t cope anymore’ and was now mentally unwell too. The one who couldn’t endure how she hoped she might. The one who fell apart when she reached the end of herself after a year of health battles and disappointments.

And that is why I know, although I am only one voice, I am one voice speaking for many!! Speaking up is ONE of the things I can still do. So I hope as I say it this way – we can also become many voices united as one.

To remind people (especially doubting medical professionals and doubting family and friends) that until you have walked our path and we have walked yours – we have no REAL idea how hard the other person’s journey has really been and is.

So please don’t assume you know! And we will try our best to do the same for you!

Just because my case is ‘unusual’ and you don’t understand it. Just because my physical condition pushed me over the edge mentally. It doesn’t mean that it is mainly psychological and that I do not have a complex medical condition that leaves my body utterly debilitated. If you lived in MY body for a day – you would soon find that I do not have a simple ‘headache’ like the headaches you have probably known that go away with a couple of pills or a good nights sleep!! 

We just ask that you PLEASE listen and allow your mind to be opened, rather than try and force us into the boxes of your limited understanding and experience. I do not expect you to know what you don’t know. But I would appreciate it, if you could just listen and try to understand, and humbly realise that you perhaps do not know as much as you think you do about what is wrong with MY body.

Because….

Until you have watched your health being ruthlessly stolen from you overnight – with no clear assurance of getting it back any time soon. Until you have known the agony of mis-diagnosis and constant questioning from medical professionals unsure of what to do with you, in part, due to a lack of knowledge about your ‘rare’ invisible condition and subjective pain scales. Or worse – until you yourself have faced being ‘interrogated’ by disbelieving, and defensive, medical professionals who think they know – what in reality they obviously don’t. (We are so very very grateful to those who acknowledge what they don’t know and do choose to listen and learn with true humility regardless.)

You do not really know what it is like!

But when you do ‘get it’ or at least try to, then you are welcomed into a new family of others who do KNOW! Who have lived through the devastation of a rare debilitating invisible illness and walked a similar path either personally or alongside their loved ones, close friends or with many of their patients.

When your eyes, ears and hearts are opened and you meet others who have faced a similar pain and carried a similar shame – you know you are not alone! It gives you more fuel for the fight because the battle is no longer JUST YOURS. You are ALSO fighting on behalf of the MANY. Those walking with you AND those coming behind you.

So today I again choose to throw off my shame by SPEAKING IT OUT – so that I can take another’s hand. And say…. “yes this journey is so very tough…. yes the battle often seems relentless….yes we can’t be sure what the future will bring… and yes you will often wonder how you will ever endure the never ending storm.”

But we can fight TOGETHER!!

Some days I struggle to find the strength to fight for just ‘me’! But it’s then I must remember – it’s not just me I fight for!! I fight for you, your family member or loved one. I fight for the person, family member and loved one who will come behind me.

I fight with, and for, all those who know the relentless exhaustion of battling a rare or chronic invisible illness and pain.

WE also fight with, and for those of you, facing any challenge in life that feels beyond you at the moment. Because WE know what it is to have to choose to keep on going, and keep on living, when some days WE just really want to give up and escape it all.

So will you join our fight of many TOGETHER?

Because it’s then… That I find I can dig EVEN deeper. Deeper than I have ever gone before. To find the strength to endure OUR storm TOGETHER!

Because this life shouldn’t just be ALL about ME and MY struggles and pain. It’s about US finding a way to navigate through and endure the ups and downs of life together – as equal broken specimens of humanity. So that on the days I feel like I am falling back into a pit of despair, when EVERY part of my debilitated body screams at me to give up the fight. I know there is someone else who can reach down and grab my hand as I start to fall – offering empathy, love, compassion and strength – whilst also helping to pull me back up to face another day. Then tomorrow it might be my day to reach down to you, as you fall, and help pull you back up to face another day too.

And that way we will break away from the shame that tries to chain us up! AND dig deep to ENDURE the tough times TOGETHER!

Life is ALWAYS better when we face it TOGETHER!

“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. ….. A person standing alone can be attacked and defeated, but two can stand back-to-back and conquer. Three are even better, for a triple-braided cord is not easily broken.” – The Bible (Ecclesiastes 4:9-10,12)


Do you feel that shame? We all carry shame in some form. Please do comment below – if we can speak it out then perhaps TOGETHER we can beat it!

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.

Learning Calmness: Flowing through life with a spinal CSF leak

“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.

Reframing Negatives To See The Positives

The expressionREFRAMING 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.

Being Real Whilst Staying Positive

Authenticity is really important to me. I have learnt that it is where true freedom lies. It’s when you have realised that you do not have to maintain a certain image or pretend your life is better than it is.

It’s liberating to just be you.
The real you!
With your strengths AND weaknesses.
Your failures AND victories.
Your achievements AND embarrassments.

When you have nothing to hide, you do not need to fear others finding out about who you really are. There is no need to ‘impress’ anyone.

Pretending is just far too exhausting anyway!

“When people have integrity, their words and deeds match up. They are who they are, no matter where they are or who they’re with. People with integrity are not divided (that’s duplicity) or merely pretending (that’s hypocrisy). They are ‘whole’, and their lives are ‘put together’. People with integrity have nothing to hide and nothing to fear. Their lives are open books.” John Maxwell

However,

I sometimes wonder – How can we be ‘real’ without wearing our heart on our sleeves the whole time? Shouldn’t there be limits to our transparency? How honest should we be with people on a wider scale?

Is it better to sometimes stay silent?

Of course it sometimes is!

There are many occasions where it would not be helpful or wise to divulge EVERY little detail about our thoughts, feelings and lives. Personally, professionally and socially.

However, I believe we can stay authentic and yet still hold back, but it’s an attitude of the heart. We can keep information to ourselves and those close to us, without hiding or pretending. It’s all linked to having a humble heart. It’s all about our motive for sharing information or keeping it hidden. Having wisdom to be aware of the context we are in, and judging how appropriate our words might be.

“When we are humble, we are down to earth. No energy is wasted on pretension. A humble man can be taken at face value.” – Erwin McManus

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For me having a chronic illness means every day is a battle of sorts. It is the daily battle of positional (upright) unbearable headaches and other nasty neurological symptoms caused by a 2 year persistent spinal CSF Leak that we cannot yet find.

Most days I see people at my daughters school, in the street, at the shops or at church. And they often ask that daily question – “How are you?”

And every day I struggle to answer!

How can I be ‘real’ without launching into a long narrative about all the daily battles and challenges? How do I respond to the ‘how are you’s’ without sounding moany and negative?

And to be honest – do you really want to know anyway? Or should I just respond with the classic ‘fine thank you,’ because maybe I am actually ‘fine’ in a ‘but still battling a chronic illness’ way that day and maybe I don’t have the energy for a long conversation anyway.

But my desire to be authentic means I don’t want to lie either, I don’t want to cover over the reality. That is no good to anyone, because then I will just end up staying quiet and pretending and no one will realise how unwell I still am. (Which has happened before).

So I have had to find new responses ‘well at least I can be here today.’ Or these days I sometimes don’t say much and just smile at people with a ‘hmmm’ or I will say ‘I am not sure what to say – I am still not well, still waiting for new scans to try and find the leak, but I am very thankful that I am not stuck in bed as much as I used to be.’

Perhaps I should give out little cards that say…

“I feel unwell a lot of every day, but for now, I have had to accept it and live with it as best I can. I am better than I have been in the past. I have better moments and worse moments. I have days where I feel more positive and days that feel like more of an endurance test – than the normal daily endurance test of living with chronic illness and pain! But I also have so very much to be thankful for. Each day I have to learn how to live here and do the best I can to love others and help those around me.”

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I don’t want to moan.
I don’t want to only communicate the negatives.
I want to stay positive.
I need to stay thankful.

But I also do want to be ‘real’.

So for now I will try my best to be as authentic as I can. Without sounding like a broken record (because most people have heard all about it before). I will try not to hide so that people understand me and the condition better.

But how about instead of me telling you all about me – AGAIN. Please tell me about the real you too. Your victories AND your failures. Your celebrations AND your struggles. So that I am reminded that we are ALL human and all face our own unique daily battles. Yours might look very different to mine. But I am sure there is something that you are finding hard too.

Because if we always just tell each other we are fine. Then we will stay stuck with our own limited and potentially self focused perspective. Never really knowing what battles other people around us might be fighting too.

And that would be a shame, because then we will miss out on the beauty of true human connection. Connection that goes so much deeper, because we can be honest about our ‘whole’ selves. So we can listen and learn more understanding from one another too.

In the hope that it will help us to become better, kinder and more compassionate humans together.


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.

‘Why Me?’ The Soul Destroying Question

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

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