Tag Archives: Chronic Illness

NAVIGATING SUFFERING AND TOUGH TIMES

Hello again! It’s been a while since I have shared a blog post … and in fact today I am sharing a very long one!!!!

Recently I spoke in church on Navigating Tough Times and as I was preparing it, I remembered that I had always wanted to make a video and write a post on some thoughts about how we can navigate suffering. So, I decided that I would combine my research and preparation to also write this article and put a video on my channel which includes my teaching from church – with a few minor edits.

I hope and pray that my own study, research and learning over the past 11 ½ years may well help to equip someone else in the midst of suffering. Suffering always feels horrible, it can be traumatic, life changing and full of grief and pain. But… although that is true…. It’s not the WHOLE story…

There can also be immense beauty, joy and even a deeper love to be experienced too… if we can hold on and slowly allow our perspective to be shifted.

That is my experience.

That is my reality.

And my hope today is that you too might discover some treasures in the darkness – despite your pain!

With much love and empathy to you all,

Becky x

Please note: This teaching has been prepared for a distinctly Christian audience. But I hope that those of different, or no faith backgrounds, will be able to glean something from it too.

NAVIGATING SUFFERING AND TOUGH TIMES

Isaiah 43:2: “When you pass through the waters, I will be with you; and when you pass through the rivers, they will not sweep over you.”

The real work, the hardest work, is to pick up the pieces and decide how to put them back together again. The new thing that emerges may not work the way it used to, but it can bend and stretch and change us in ways we come to treasure even more.” Katherine and Jay Wolf

Navigating Tough Times is such a big subject, as all the ‘Strong Foundations’ subjects are. Basically, this is a teaching about when things are tough and there are no quick fixes. It’s a teaching that is here to equip you to face and endure the hard seasons in life that sometimes come and don’t let up easily – whether you are in one now, have been through one in the past that still affects you or will go through one in the future.

But in talking about ‘tough times’ I feel like I need to give a disclaimer – that this is just a snapshot of understanding suffering and hard times and how we are best to deal with them as believers and as the Church. There are so many different types of suffering and struggle. Be it grief and bereavement, physical health and mental health issues, abuse, difficult job situations, redundancy, war and famine, persecution poverty, addiction, relational breakdown, loneliness, rejection, bullying, financial hardship and debt, infertility and challenging family dynamics. This has not an exhaustive list of course, it’s just a few things that came to my mind.

I never want to minimise anyone’s experiences of suffering or rate mine or others experiences above others.

But as with all the strong foundation preachers that we have heard over the past couple of months, this message is about trying to equip you to grow in your faith and go deeper in your foundations. We wanted to cover tough times and suffering because it can really make or break someone’s faith. Especially when those seasons last a very long time.

I feel very privileged to be speaking on the subject because I feel like it’s been a massive area of personal study, for me over the past 11 years. Even just looking through my phone notes, I came across so many great quotes from various books I’ve read over the years – so there will be many quotes in this message. Which I actually think is important because we need to hear different perspectives on suffering, because everybody’s experiences unique.

Tell you some of my story. I did tell some of it in one of my messages from last year: ‘Boasting About My Weaknesses.’ https://youtu.be/6PjU8i5AtMQ I also explained that this is why I pre-record my church messages as it’s easier for my body and brain and allows me more focus.

Most of you know something of my story – it is so long and complex I can only touch on my conditions but do have a public YouTube channel and blog if you were interested in more in depth of info and how I have navigated it over the years. Basically11 1/2 years ago I fell off a ladder and sustained two quite rare and very complex brain and spine injuries. I still have what is called ‘A Spinal CSF Leak’ in my spine which is where your spinal fluid leaks out of a hole in the protective layer that holds in your spinal fluid in your spine. This means your brain and whole nervous system can lack enough spinal fluid to function properly. It causes so much pain, a constant drunk/ foggy head, lack of mental clarity, a constant stiff neck, fatigue and many other symptoms. I also have Arachnoiditis which is midly adhesive. This is where your spinal nerves inflame and begin to stick to the edges of your spinal canal leaving very high levels of nerve dysfunction, pain, struggles to sit and stay in one position, travel and when in an inflammatory relapse – to walk, talk and think with clarity – without hospital visits and very high doses of steriods. Basically, they are both extremely painful and debilitating conditions I live with every day – even though most of the time ‘I look well’ from the outside.

My lack of healing and the trauma of facing countless doctors over the years who didn’t really understand due to my conditions being so rare and not well enough researched etc, also led to me having two very serious physical & mental breakdowns which left me despairing of life itself. So I have also experienced two or three serious mental health crisis’. Partly due to the immense strain of these conditions and major battles to get diagnosed and helped. But also due to trying to‘stay strong’ and striving hard to find enough faith to receive my healing. Including at the end of my first year of serious illness attempting to try to live like I was well when I was actually seriously unwell. So I ended up at the complete end of myself – not sleeping, stuck in bed in constant severe pain – in an extremely dark place of despair. And yet I still knew only God and my Christian faith could help me find a way forward whether I was healed or not. This is why – as I shared in my message ‘Boast about my weaknesses’ last year – I ultimately I had to ‘let it go’. Healing had became an idol and I had to rediscover Jesus for who he was in totally and not just ‘the healer’ & find the spiritual strength to help me endure for the long haul.

At the worst times of experiencing the deep trauma of utter darkness and despair – I found that I certainly didn’t need ‘theological answers’ – I simply needed love, gentleness, ccompassion, comfort, understanding and care. And even though God felt so distant at times and I felt like such a failure. LOVE did break through and began to bring some light in an extremely dark place. I couldn’t fathom theological thinking – It was only true, warm and gentle sacrificial love that was the thing that showed me God was truly real. I couldn’t feel God’s presence – but I could feel the fierce yet gentle love and support of my husband. Matt you showed me Jesus when I was struggling to see and feel Him directly.

REMEMBER – We can show up and reveal Jesus to those who suffer deeply – IF we are present and show gentleness, compassion, care, grace and love without judgement.

What I discovered over the next few years, was that I needed to deepen and widen my theology of suffering. Especially to help myself and others to navigate seasons of suffering that just won’t go away whatever we do. So I had to learn to listen and consider all sorts of different voices, perspectives and thinking on what the Bible says about suffering and how to approach it

One of the initial books I read which helped to open my mind was – Where is God when it hurts by Philip Yancey (I know Yancey has recently discredited himself for moral failure – but the book was written long before this and still has so much to teach us). It starts off by talking about a young couple he knew – newly married, loved God and ready to serve him. But very early in their marriage she developed Hodgkin’s disease which is a cancer of the lymph glands. She had to stay in hospital for rounds of chemo which made her so sick that she couldn’t eat, she completely lost her radiance & outward beauty. Periodically she had radiation treatment that in those days required you to lie on a metal table completely naked. Over the weeks and months, she became a shell of herself. During this time, she contemplated God and suffering.

The interesting thing that Yancey does is to record her reports of some of the well-meaning ‘Visitors’ who came and gave their advice – from all theological perspectives:

– Firstly those who just tried to ‘avoid’ the issue of her suffering and simply bring ‘positivity’ and ignore the harsh reality of what she was facing

– those who told her she had obviously done something wrong and needed to search her life for what God wanted her to change.

– others suggested God is so impressed with you that he has chosen you to suffer and he will reward you for your endurance.

– another told her – this will only end when you have genuinely learnt to praise God for the privilege of suffering.

– yet another – who loved watching the US TV healing evangelists told her – if you just have enough faith you will be healed, so rebuke the devil, increase your faith and claim your victory!!

Philip Yancey then visited her and found her not only immensely unwell and in deep despair but also utterly confused about God and what He wanted of her. Who she should listen to? What lessons she should be learning through it? How can she keep staying positive and full of praise? And how is she supposed to ‘muster up’ enough faith for this promised healing? He thought to himself upon leaving ‘Is Christianity supposed to make a sufferer feel even worse?

Why do we often choose people’s weakest times to ‘burden’ them with all of our opinions on what they need to do to improve their situation?

Now there are of course elements of Biblical truth that have influenced ALL of those opinions, advice and teachings. It’s not ALL wrong ‘in theory’. But it did remind me of the book of of Job in the Bible and his friends opinions about his suffering.

Of course, there are lessons to be learnt in suffering, God certainly allows suffering in certain seasons, sometimes our choices and mistakes can add to our suffering, we can of course benefit from praising God and being thankful despite our pain, it is also true that our faith can play a part in our healing as we see in the gospels. But as Philip Yancey touches on – we need to learn the correct time and place for opinions, advice & simplistic theology. These things are never as simple as they look and when someone is in the depths of suffering, they often simply lack the ability and energy to work through all the different theological viewpoints and all of the nuanced questions and answers. They can then despair even more when the simplistic answers and fixes don’t seem to work. I only had capacity to consider and meditate upon all these things – when my mind was less chaotic and I started feeling slightly more well again. (Although I never actually feel well – just ‘less ill’ than my worst times.)

CAN GOD ACTUALLY BE TRUSTED IN THE MIDST OF SUFFERING?

Psalm 34:18: (NIV) “The Lord is close to the broken hearted and saves those who are crushed in spirit.”

Psalm 22:23-24 (NLT)Praise the LORD, all you who fear him! 
For he has not ignored or belittled the suffering of the needy.
 He has not turned his back on them,
 but has listened to their cries for help.


Psalm 147:3 (NKJV)He heals the broken hearted. And binds up their wounds.

“You see, the message of the Bible is that the arms of God’s power, presence and grace wrap around the deepest and darkest moments of human suffering.” Paul David Tripp

Does this sound like a distant God who doesn’t care? No that is not who our God is: He is compassionate, empathetic, comforting, loving and understanding. He is not there to condemn and accuse. However, there can also be purpose in pain, redemption in suffering, the beauty of his presence, power and comfort in our deepest weakness and things we can and do learn through seasons of pain. 

SUFFERING IS INEVITABLE.

The Bible talks a lot about it. Central to our faith is the concept of a suffering saviour. The New Testament Is then full of people being persecuted for their faith, especially Paul who we will come back to later.

John 16:33 NIV In this world you will have trouble. (Tribulations ESV) (NLT many trials and sorrows) (AMP tribulation, distress & suffering) But take heart! I have overcome the world.

JESUS THE SUFFERING SAVIOUR

John Stott whilst reflecting on suffering and the cross wrote: ‘I could never myself believe in God if it were not for the cross… in the real world of pain, how could one worship a God who was immune to it?’

Philippians 2:6-8 NIV “Who, being in very nature God, did not consider equality with God something to be used to his own advantage; rather, he made himself nothing by taking the very nature of a servant, being made in human likeness. And being found in appearance as a man, he humbled himself by becoming obedient to death— even death on a cross!”

God doesn’t distance himself from human suffering, he sent Jesus to experience it first-hand. Our God is a God who through Jesus becoming human has personal experience of human suffering, physically, relationally, mentally, emotionally. He ‘laid aside his glory and majesty’ to become a vulnerable human who faced betrayal, rejection, misunderstanding and the limitations of a physical body which was brutally beaten and completely broken until he died. God didn’t protect him from pain and suffering – he led him to it. He deserved a throne but submitted to a cross.

Sometimes we may feel God is absent in our suffering. But so did Jesus as he lay brutally beaten, struggling to breathe and hold onto life on a Cross he shouted my God my God why have you forsaken me? – he too felt the Fathers distance.

Elisabeth Elliot (whose young husband was killed by tribesmen they were ministering to as missionaries in Ecuador) Our vision is so limited we can hardly imagine a love that does not show itself in protection from suffering. The love of God is of a different nature altogether. It does not hate tragedy. It never denies reality. It stands in the very teeth of suffering. The love of God did not protect His own Son. The cross was the proof of His love – that He gave that Son, that He let Him go to Calvary’s cross, though “legions of angels” might have rescued Him. He will not necessarily protect us from anything it takes to make us like His Son. A lot of hammering and chiselling and purifying by fire will have to go into the process.

SUFFERING AND THE SECULAR WORLD

“Suffering causes us to scan our lives and face the fact that we control very little. Paul David Tripp

Suffering in its simplest form comes in the space between what we thought would be and what is. – Katherine & Jay Wolf

One of the best books I have read on suffering is Tim Keller ‘Walking with God through Pain and Suffering’The book deals with theology, philosophy, psychology, Christian apologetics (defending the gospel) – but also interweaves many deeply moving personal and diverse stories of deep suffering and pain experienced by Christians from all sorts of human experiences of suffering – I highly recommend it!

In the early chapters of the book, he writes a lot about the diverse and different perspectives on Suffering from around the world and from different religious and spiritual perspectives. He also spends a quite a bit of time explaining how secularism in the West has caused a major cultural shift over the past century or so regarding views on suffering and how well we deal with it.

He writes about how the secular assumption that life is just confined to this material world and lifetime means that people live their lives for what feels ‘good to them’ in this world so: comfort, safety and pleasure are of the upmost importance.’ Suffering is then a BIG problem to this because it blocks you from achieving these things as you might want.

So the underlying message of our society is: AVOID SUFFERING AND PAIN AT ALL COSTS!

Interestingly, Keller references Dr Paul Brand’s book The Gift Of Pain’(Philip Yancey does too in ‘Where is God When It Hurts?. Doctor Brand worked with leprosy patients whose bodies were ravaged because they lacked normal pain sensation’s so he argues that pain can actually be a gift to us that warns when something is wrong in our bodies, without that you injure yourself without knowing etc) Dr Brand also writes about the difference in how people viewed and dealt with suffering in India – where he worked with leprosy patients – compared to the USA. He observed in the West that mmeaning in life is often caught up in the pursuit of pleasure & personal freedom & achievement – he suggests that ‘this is why suffering is especially traumatic to Americans. Many other cultures in the world put higher meaning on something other than individual happiness & comfort. This can be be moral virtue, gaining your way into paradise by good works, aiming for enlightenment after being stuck in karmic cycles, honour of those around you, faithfulness to the truth, putting family virtue higher than individualism or pursuing a greater meaning spiritually or philosophically. So in these cases suffering can actually been seen from the perspective of helping you to achieve those things:

Where as in the Secular world suffering rarely has much meaning or purpose: those who suffer feel that they are ‘a victim’ of something that is simply – a big distraction, an unwelcome tangent and a chaotic interruption to our comfortable, safe lives. So it should be prevented, stopped & alleviated wherever possible!

Whereas even in Western history suffering was simply part of a normal life story. For instance, in the 1800’s 40-50% of children died before their 5th birthday and the average life expectancy globally was only 30-40 years old. Suffering and death of your closest loved ones was a normal part of people’s daily lives far more than now. But people had to choose resilience and endurance, to learn & grow through their experiences. Whereas sometimes in modern times we can lack resilience and perspective.

The influence of the secular/ material world around us, can thus actually damage our view of God and can lead to a sense of ‘spiritual entitlement’ as Tim Keller calls it. The belief that God owes us a comfortable and pain-free life and should ensure all of our plans for our lives go as smoothly as possible.’ We then (and I can say this affected me on my journey) struggle when things suddenly get so hard – and pain, discomfort and shifting life plans become our norm. BUT this is where I had to learn to enter back into a proper view of the gospel and the message of Jesus’ life and the cross.

In reality, being a disciple or apprentice of Jesus means ‘taking up our cross & following him’ (Matthew 16). Even though God is a loving Father who will protect and provide for us. He is not interested in giving us an easy, comfortable and pain free life. Which can then cause us to become more individualistic and self-absorbed. Following Jesus’ example of the greatest of self-sacrifice on the cross, is meant to be uncomfortable, difficult and challenging, As Jesus followers, we are to surrender our control, influence and desires to him. We are to live a life of sacrificial love towards God and others.

But this is difficult in a culture that teaches us to ‘seek out comfort and pleasure at any cost. And even more sad, is when this all creeps into our Christian world view. The ‘prosperity gospel’ was affected by this – it made, and still does make, tempting promises of achieving a life with full health, financial abundance and spiritualising the American dream – if you can just believe enough for it. But is this who Jesus was and what he represented – money, wealth and power? No Jesus lived an incredibly humble life – he grew up a quiet town, followed his dad’s profession of being a carpenter. Then once his ministry started at age 30, he was a travelling minister with no fixed place to live. Those who followed him usually gave up their livelihoods and fixed addresses to follow him. Persecution was real to both Jesus and also in the book of Acts. The apostle Paul’s list of his sufferings and persecutions in 2 Corinthians 11 puts into perspective some of our own daily struggles. Paul was whipped, beaten, stoned with rocks, imprisoned, shipwrecked, adrift at sea, lacked essentials, was frequently exhausted and felt deep concern for the churches. But interestingly he writes in Philippians 4 that he learned the ‘secret of contentment’ despite all these immensely ‘tough times’.

WHY SUFFERING?

In the Bible book of Job we are given an insight into one man’s immense suffering and his wrestles with it. We are given a window into the spiritual realm to see some of why Job is suffering – but it is never revealed to him directly. However, interestingly when he asks God for answers – God does not directly answer his questions. He simply reminds Job of His great power, wisdom, wonder and the glorious intricacies of the nature around us which as the Bible book of Romans tells us – should reveal to us who God is.

It makes the question of why there is suffering complex with little definitive or clear answers.

Of course there are truths we can glean from the bible – The influence of Satan and his forces of evil, human Sin, selfishness and the thirst for power and control that is introduced to us in the garden of Eden. And subsequently led to death entering into the world causing it to slowly become broken and fractured! The book of Romans also gives us insight into this as do other books and passages.

However, these reasons in themselves would take a whole message or series of messages to work through and try to explain. So I recommend if you are interested- doing a deep dive into what the Bible says about suffering yourself or read a book like Tim Keller’s for an overview.

So instead of trying to answer  WHY I want us to turn back to thinking about HOW CAN WE PERSONALLY AND AS A CHURCH PRACTICALLY NAVIGATE TOUGH TIMES?

WHAT CAN WE DO?

PURPOSE & MEANING IN PAIN

Romans 5:3-5: “…We also glory in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope.”

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

VIctor Frankl was a Neurologist, psychiatrist & philosopher who wrote a book called Man’s Search For Meaning’ after spending time in a Nazi concentration camp for being Jewish. His personal experiences and observations of other prisoners showed him that those who found a deeper meaning and purpose in their suffering were generally those more likely to survive. In the book he quoted another philosopher to support this point who put it: “He who has a why to live for can bear with almost any how.” After the war went on to develop ‘this theory’ in his psychological work.

I have discovered our faith in Jesus and the truth of His gospel (which is so different to our secular world) can become our MEANING and PURPOSE. It is the gospel of Jesus Christ and His upside down kingdom, that gave me the strength, purpose and inspiration to keep on going even with all of the unknowns that continue to hang over me. Loving God and serving Him – despite our grief, pain and trauma – can be our anchor. Loving others and allowing our own pain to soften us and connect us more deeply to others can make all sorts of suffering strangely beautiful.

This is one of the greatest ‘treasures’ in the darkness.

James 1:2-4 NIV “Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance. Let perseverance finish its work so that you may be mature and complete, not lacking anything.”

So we see that we CAN praise God and even discover HIS joy in our tough times because it is not wasted time (as the secular view) or a tangent. GOD WILL USE IT. He will strengthen us, help us to grow and mature, build resilience – all whilst learning more humility and love for others (if we let him do it!) I have also found that our love for others can also become more purposeful because it takes more sacrifice to love when you are hurting, tired and in pain. But self-  sacrifice is always at the heart of true love.

Romans 8:28 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.

“The Bible talks of suffering and difficulty as a furnace in which many impurities of soul are “burned off” and we come to greater self-knowledge, humility, durability, faith, and love.” – Tim Keller

LAMENT

This is the scripture Jesus quoted on the cross to reflect his own despair. Even Jesus lamented.

 Psalm 22:1 My God, my God, why have you forsaken me? Why are you so far from saving me, so far from my cries of anguish?

‘Lament is an expression of deep grief, anguish, sorrow or regret (often outward and vocal – although in Romans 8 the bible refers to this sometimes being without words and a ‘deep groaning within us)

We particularly see a lot of lament in Bible books like Psalms and Lamentations

Lament is simply the deep acknowledgement and processing of things being not how they should. The Psalms are songs and poems full of this. Through these scriptures God is giving a voice and words to human suffering and showing us that it is ok to struggle, to grieve, to be angry and frustrated at how life is. Lament should be expressed in prayer and in the midst of community. As a church we should allow people to lament without trying to get them to move past it quickly.

Lament can actually help us to wrestle through to a deeper, rawer and more real and tested faith. If it is given room to do it’s work. This is what the Psalms show us that start with very raw lament, but then often end in praise.

Even Jesus wept at Lazarus’ tomb – even though he was just about to raise him from the dead.

LEARN FROM OTHER CREDIBLE CHRISTIAN LEADERS & MINISTRIES WHO HAVE FACED SIMILAR TYPES OF SUFFERING – seek out their stories & teaching. Our stories are all unique but sometimes we need to hear voices that can relate to our own stories of suffering.

This was invaluable to me. I didn’t have leaders who had experienced what I had. So although they could support and comfort me – they couldn’t always understand and equip me like others who really had gone through similar challenges.

Here are some general resources:

BIBLE DEVOTIONS/ STUDIES

  • You Version Bible App A free app with devotionals / Bible reading plans about your personal challenges. Search for plans on topics such as: Suffering, grief, anger, anxiety, addiction, forgiveness, abuse etc

THEOLOGY & APOLOGETICS (WITH REAL LIFE STORIES)

  • Walking with God Through Pain & Suffering – Tim Keller. (Tim Keller died in 2023 of pancreatic cancer also his wife had long term severe Crohn’s disease. The book also includes many other diverse stories of suffering including bereavement & grief, divorce, infidelity, infertility etc)
  • Where is God in all the Suffering – Amy Orr Ewing (also on the Lead Podcast)

WRESTLING WITH GOD THROUGH HARD TIMES

  • God on Mute – Pete Grieg (When God seems to stay silent in difficult times)
  • Hope heals/ Suffer strong/ ‘The Good Hard Story Podcast – Katherine & Jay Wolf’ (Also watch their videos on YouTube) Katherine & Jay Wolf ‘Suffer Strong’ (Katherine had a brain stem stroke at age 26 – 6 months after the birth of their son. After life saving surgery and 2 years of rehab she is mainly wheelchair bound with many disabilities but seeks to speak up, help and advocate for those weak, hurting and disabled – especially Christians.

SUFFERING FOR THE GOSPEL

  • The Hiding Place – Corrie Ten Boom, Rescued Jews from the Nazi’s in Holland then ended up in a concentration camp.
  • Tortured For Christ – Richard Wurmbrand. A Romanian Pastor who was tortured and imprisoned for his faith by the Communists
  • Persecuted Church resources – Release International, Open doors (website, videos and podcasts) remind us of those who currently ‘suffer for the gospel’ and need our comfort and support which can also help develop a better perspective on our own struggles. (These books and resources really helped/ help my own perspective of my suffering.)

GET SUPPORT – other believers, Pastoral Care Team, Life Groups, Men’s and Women’s ministries, Arise Youth Team. Sometimes outside support is also needed such as medical support, a specific therapy or counselling or a particular agency that deals with your particular challenges. (We are developing a Pastoral Care Directory to help direct people to places we are already aware of.)

HOW CAN WE SUPPORT OTHERS SUFFERING?

 Think too of all who suffer as if you shared their pain. Hebrews 13:3 J.B. Phillips New Testament

Our compassion and empathy can actually really deepen when we have walked the humble path of long term suffering and have faced the depths of our own weakness. It is one of the great purposes and privileges of pain. Sharing in the suffering of others and carrying one another’s burdens without judgement.

LISTEN

ACKNOWLEGE

PRAY – IF WELCOMED

OFFER COMFORT

“Suffering invites us to be radically human with one another, perhaps doing nothing more than reaching across the table, clasping hands, and weeping together. We are afforded the chance to create a safe place for someone else to mourn…” Jen Hatmaker

LISTEN – Stephen R. Covey states“Most people do not listen with the intent to understand; they listen with the intent to reply.” 

The Bible book of Job & his friends are again a good illustration. At first they chose the best path of silence – simply being with their friend as he suffered greatly. However. The problems then began when they opened their mouths to offer Job all their ‘opinions’ on why he was suffering.

Please remember that we don’t always have to ‘find the right words to say’ and that’s ok – you can offer your presence, a kind look, even a genuine tear, a hug, a gift, a meal.

ACKNOWLEDGMENT (of pain) is everything to someone struggling!

Rather than trying to ‘fix’ someone’s pain with advice – we firstly just need to ‘acknowledge’ it. Ie. ‘I am so sorry you are hurting – it must be very hard’… then mostly try to listen.

PRAY FOR OTHERS – But always ask for permission and enquire about what they specifically want prayer for. ie. Sometimes people who have long term illness and disability can find others assume that is what they want prayer for or even force it. However, sometimes they might be trying to get the focus off that thing and onto Jesus as a whole. So where possible – be gentle, understanding and listen before you pray.

BRING COMFORT

2 Corinthians 1:3-4: “Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves receive from God.”

Comfort others with the comfort you receive. This is one of the purposes and benefits of suffering if we allow it to deepen our empathy, understanding (rather than our anger and bitterness) It enables us to  comfort, support and communicate with more understanding.  But be careful not to compare your situations – all our stories are unique so tread carefully in the language you use.

THERE IS ALWAYS HOPE

Revelation 21:4: “‘He will wipe every tear from their eyes. There will be no more death or mourning or crying or pain, for the old order of things has passed away.'”

As believers when we die, we are heading to a gloriously perfect place where our bodies will no longer be sick or feel pain or saddness. Ultimately, the bible book of Revelation tells us that there will be a New Heaven and New Earth. Can you begin to imagine this world joined with Heaven and God’s presence and love and completely perfected! I always hope then I will be able to see some of the world’s wonders made perfect again – because at the moment it is so tortuous to travel very far and I love seeing beautiful places.

CONCLUSION

Isaiah 41:10 NLT “Don’t be afraid, for I am with you. Don’t be discouraged, for I am your God. I will strengthen you and help you. I will hold you up with my victorious right hand.

Navigating tough times and suffering is hard. Our stories and journeys are unique. Katherine wolf I spoke about earlier has a podcast called ‘THE GOOD HARD STORY PODCAST’ with a strapline ‘because the good story and the hard story can be the exact same story.’ And I relate to that so much. Suffering is awful, it always feels horrible. It can come like a sudden tornado and send your life spiralling and crashing down around you. But I am here to remind you our suffering saviour SEE’s you and He loves you. If you can reach out to Him he will wrap his perfect arms around you and hold you until you feel a bit stronger. He will send people to help, support and comfort you – if you keep that door open and don’t isolate or withdraw. And ultimately, he will use even the worst, most tragic and traumatic things that can happen in this world – for His glory and to build into your life a testimony of His goodness and grace.

And then your own story of pain might then become a treasure and anchor in the darkness for someone else stuck in the dark fog of grief or despair!

Isaiah 61:3: He can “bestow on you a crown of beauty
    instead of ashes,
the oil of joy
    instead of mourning,
and a garment of praise
    instead of a spirit of despair.
Then you will be called oaks of righteousness,
    a planting of the Lord
    for the display of his splendour.”

To finish with:

This poem is based on text found scrawled on a cellar wall in Cologne, Germany, in 1943. It is believed to have been written by a child hiding from the Nazis:

I believe in the sun

Even when it is not shining

And I believe in love

Even when there’s no one there

And I believe in God

Even when He is silent

I believe through any trial

There is always a way.

But sometimes in this suffering

And hopeless despair

My heart cries for shelter

To know someone’s there

But a voice rises within me saying “Hold on my child”

I’ll give you hope

I’ll give you strength

Just stay a little while.

CHRISTMAS 2025 & NEW YEAR CATCH UP

Christmas greetings and blessings to everyone who watches any of my videos or views my blogs. I know Christmas can be a challenging time for many, especially those with long term health challenges but I send you love and prayers despite it all. I also hope 2026 is a year of more better days than worse days for you whatever it brings. 

https://youtu.be/1oiXiTQyCWo?si=ELfP6BOroBdRN_RQ

I recently posted this video as a shorter Christmas and New Year catch up. I know I don’t update and post as much anymore, but as my video says it’s partly due to changing seasons. And partly due to feeling like I have said a lot of what I wanted to say through my blog posts and videos. 

But I do send you all much love! 

For those interested in more Christian content I mentioned a link to our church website www.lifechurch.co.uk and our church YouTube https://youtube.com/@lifechurchleicester that have some videos of me speaking/ teaching for church. Here are a couple of recent ones: 

AGAPE LOVE: https://youtu.be/nWsdXjWsygU?si=FBAMXIvZ3jwYT4zx

BOAST ABOUT MY WEAKNESSES: https://youtu.be/6PjU8i5AtMQ?si=f3SV3R94Wl-OQm-t

You can also watch my previous videos on Arachnoiditis/ Spinal CSF leaks and chronic illness on my channel https://youtube.com/@beckyhillblog?si=fCWNCiWd2TO7D2QM or read this blog http://www.beckyhillblog.com for more information and past educational and inspirational content especially linked to my illnesses and how I have navigated through it’s many challenges over the past nearly 11 years.

Take care and much love, 

Becky x

NINE YEARS WITH A SPINAL CSF LEAK

“There is so much rejection, pain and woundedness among us, but once you choose to claim the joy hidden in the midst of all suffering, life becomes celebration. Joy never denies sadness, but transforms it to fertile soil for more joy.”

– Henri Nouwen

January marked nine years since my accident (a ladder fall) which means I have now spent over nine years living with a spinal CSF leak & arachnoiditis.

Nine years – that’s a long time.

Nine years of pain.
Nine years of endurance.
Nine years of medical support.
Nine years of a changed life.
Nine years of restrictions.
Nine years of daily struggle.
Nine years of trying to understand what actually happened to me that day & what has happened to my body since.

It’s not been easy. In fact it’s never easy. It’s always been hard.

And yet…

Nine years does become something of a new normal.

To the extent I have almost forgotten what it’s like to have a body where pain is absent, when you don’t have to spend all day every day managing distressing symptoms. When I had more choice about what to do and how to do it.

The current ‘normal’ has at least become more manageable. As I have learnt more about what is wrong, how to manage it, how to work with my body, accept it and make the most of the life I have. Now that I have treatments that help me to keep the worst debilitation at bay and to treat the radical relapses that can seemingly ‘take me back to the start’.

So as I reached my nine years anniversary I decided to connect again with others suffering. Whether at the start of your journey or many years in – I write for you to know that someone understands. Our lives and stories are always unique, and yet similar experiences do bring an affinity, That can help us to feel more seen and heard ourselves.

I also continue to write and make videos to educate others. Whether it’s those suffering, those caring for them, friends and family that are trying to understand or even the medical professionals that treat them. I know that true life stories can be powerful. To welcome someone into your world. To speak up for yourself and for others suffering like you.

Because if we are not heard then nothing will change.

And in the world of CSF leaks (& arachnoiditis) things still need to change – a lot. Much has already changed in nine years regarding spinal CSF leak research … and yet there is still so much further to go. The stories still regularly exist of people struggling to be listened to and diagnosed. Those simply not believed and shut out from the medical care they need. And those despairing because they can’t seem to get well however much treatment they may have because unfortunately the quicker you are diagnosed and treated the better the potential outcome of treatment.

So I firstly made a new video about a month ago. It’s quite a comprehensive update so it’s 30 mins long. This blog article is to compliment that and also enable people who do not speak English well to translate it more easily.

My videos and this blog post were also written in reflection and response to having had MRI’s from October 2023 reported by a neuroradiologist and my specialist consultant neurologist saying that they can still see my leak in the cervical and upper thoracic spine (extradural fluid) and it remains unchanged since my last CSF leak protocol MRI’s in September 2019. So that has confirmed that I am still leaking. This is why I wanted to focus this article and my video on my leak rather than my arachnoiditis symptoms. Although as I say in the video – it’s often so hard to really know which is which because of all the overlaps and also because my symptoms and scans point to both injuries being caused by the original ladder fall. So they developed together.

NINE YEARS WITH A SPINAL CSF LEAK YOUTUBE VIDEO
https://youtu.be/u5sVPPr1Rm4?si=lffBd05lc23dWMwM

Here is the content summary of the video which can be found below the video on YouTube and can be used to skip to different parts of interest.

VIDEO CONTENT SUMMARY

2:29 Arachnoiditis flares bring more classic postural CSF leak symptoms
2:48 I can be upright most of the day
3:06 Consistent and similar symptoms throughout the day
4:36 Arachnoiditis vs spinal CSF leak symptom confusion
5:40 Stopping invasive spinal procedures
11:11 Leak symptoms: Fuzzy/ dizzy/ dreamy equilibrium
11:38 Constant head pressure sensation
11:50 Neck stiffness
12:36 Phonophobia & Photophobia
13:06 Concentration and cognition limitations
13:42 Travel in cars and planes tough
14:50 Hyperreaction to ICP (intracranial pressure) changes
16:43 Can I still work?
19:16 There is still life and hope
20:40 I had 4-5 years of clear scans at start
21:40 Finding your own daily rhythm
23:53 Learning from others whilst understanding our uniqueness
25:50 ‘A marathon not a sprint.’
27:18 Be careful with getting fixated on getting fixed
28:02 There is a life to live even if you don’t get fixed
31:08 What about the future?

I am not going to write about all the content because I talk so much about it in my video. But I would like to reflect on a few important aspects of it.

SPINAL CSF LEAK SYMPTOMS

Firstly I talk quite a bit about some of my most prominent spinal CSF leak symptoms. The main problem I have in talking about them is that there is so much overlap with my arachnoiditis symptoms that it’s hard to always tell which is which.

Also these days many of my main symptoms are no longer so ‘classic’ in the sense that my headache is not postural anymore (unless I am in an arachnoiditis flare). And it’s also not ‘second half of the day’ in the sense that it gets worse the longer I am upright due to slowly loosing spinal fluid. I can actually be upright most of the day – although never without many symptoms. I do tend to lie down about 4-5pm but not because the headache has increased in intensity. But due to the fact I am utterly worn out by spending my whole day mainly on my feet. Managing my symptoms by keeping on moving about and walking around 10,000 steps a day. I cannot sit comfortably so lying down is my only chance to really rest. I do then lie down a lot of the evening to rest – but can get up to make and have dinner and do other things if I need to. I often do need to get up a bit or my lying down headache gets increasingly bad.

So really, my symptoms are pretty consistent throughout the day. I actually wake up with a headache, have headaches and feel pretty ill overnight if I am awake at all and have headaches lying down for any length of time – as I just said. So sometimes being upright improves my headache somewhat. As does walking and moving around.

For some reason staying in one position for any length of time makes all my symptoms worse – my head, neck & spine pressure increases, my thinking becomes cloudy and the pain quickly escalates to unbearable levels. Whether that’s standing, sitting or lying down. Although sitting is one of the worst positions for me that is perhaps more linked to the arachnoiditis. As is the typical need to keep on moving about to manage the pain, pressure and leg weakness that actually builds if I stay still. (Unless in a relapse – then walking causes my legs to get weaker).

My symptoms could also be somewhat affected by increased spinal fluid pressure (or volume) at times due to the arachnoiditis and subsequent CSF flow issues. And perhaps due to my body overcompensating in spinal fluid production due to the leak.

But it’s very very complex. And many doctors could only really theorise like I do. As a leak goes on long term (& during recovery) it can be very hard to differentiate higher or lower pressure (or volume) symptoms.

It is also possible that the leak helps somewhat regulate my pressure now. Like a natural shunt. Hence I could be at risk of a massive rebound high pressure issue if the leak was ever actually fixed.

STOPPING INVASIVE SPINAL PROCEDURES

Which brings me on to my next major point. The decision to stop further invasive spinal scans and procedures such as CT Myelogram (CTM), Digital Subtraction Myelogram, (DSM), epidural blood patches and surgeries. For me it’s just FAR too risky to the arachnoiditis.

I haven’t got the time to tell the story here – but I do on the video in the section where I talk about stopping invasive procedure’s. My last invasive spinal procedures were in September 2017. At that time I had a CTM And, we then followed up with a 40 ml blind epidural blood patch a week later. And I was subsequently in extreme pain which acute symptoms following both procedures. I had in fact been in a relapse prior to them. Which meant my undiagnosed arachnoiditis was in a massive flare up. Following the CTM I had a tonic clonic seizure in the recovery ward and was extremely ill and sick for the next 24 hours or so. All my normal symptoms were also made acutely worse. So we decided to try a lumbar EBP because we feared the lumbar puncture had perhaps given me a new leak & also in the hope it might have treated the old leak. That also caused me immense pain in my spine and head. I had to stay in hospital a number of days but struggled for months with severe head and spine pain we thought could perhaps be attributed to rebound high pressure. But in hindsight I think it was more complex than that because of the undiagnosed arachnoiditis.

So in summary – for me further invasive scans (that require LPs and contrast) are too risky. As are EBP and surgeries. Anything that goes anywhere near the leptomeninges feels too much risk of accelerating the arachnoiditis.

I do have friends with arachnoiditis who have had surgery on leaks and there were often complications which could often lead to the surgery failing or new leaks appearing perhaps due to the subsequent pressure surges. So it’s just not simple.

MONITORING FOR SUPERFICIAL SIDEROSIS

What could change that decision though is if I do develop Superficial Siderosis – which leak experts across the world are beginning to note as anything between 10-50% (and sometimes even more) likely from long term (especially ventral leaks which mine may well be). Especially those of 10-20 years. It’s an iron deposits (deposition of haemosiderin) build up in the brain or spinal canal from long term leaks or bleeds in the nervous system etc. And the only way to stop its progression would be to seal the leak.

But we shall cross that bridge if it comes and in the meantime I am having special MRIs to monitor for it.

HOPE FOR THOSE SUFFERING

Finally I wanted the video to provide some hope for those recently diagnosed or suffering with a spinal CSF leak long term. Because it’s often an awful thing to experience and the thought of living with something like this long-term just seems impossible. Which can often lead to utter despair and even suicidal thoughts.

So I wanted to say that you CAN live with this condition long-term. It is so very difficult. It’s so life changing and every day is spent managing symptoms and pain. Your life does have to change and that takes a long hard process of grief and letting go of who we once were. But I do believe we can learn to thrive despite it that doesn’t mean that we will feel like with thriving, but it can be a possibility and a part of our life again.

I actually made a video in the summer called ‘Learning to Thrive Despite Having a Chronic Illness’ which was all about the journey of learning how to discover a new way of life despite our injury, restrictions and challenges.

I never want to minimise how hard it is to accept our conditions and learn how to discover the best life we can despite them. I am also very grateful to be fortunate to currently have so much time out of bed, and still have the ability to walk so much which helps in what I am able to do. However, I haven’t always been able to do what I can now and have experienced many months and many years of spending a lot of my day if not all of my day in bed.

And in the end, we have no choice. We have to find a way to live like this because the only other option isn’t an option, especially when you have a family and children who need you.

I will keep on telling my story, and letting you know the twists and terms and the ups and downs of how it develops. The future is full of unknowns. It’s full of challenges which I have to both face the reality of, but also try not to think too much about.

“Worry does not empty tomorrow of it’s sorrow, it empties today of it’s strength.”

– Corrie ten Boom

So I will choose to keep on living life – for now WITH my spinal CSF leak and the arachnoiditis. And if I am to keep on living, I will try and find ways to keep on finding that:

Joy in living, despite the awful symptoms.
Contentment, despite the loss.
Peace, despite the constant noise of the pain.
And always pressing deeper into that Love, both spiritually & relationally that sustains us and gives us the strength and purpose to keep on going.

Even when some days are just really really hard.

“There is so much rejection, pain and woundedness among us, but once you choose to claim the joy hidden in the midst of all suffering, life becomes celebration. Joy never denies sadness, but transforms it to fertile soil for more joy.”

– Henri Nouwen

Here is my new summary video of my whole medical journey as well as footage of my January/ February 2021 adhesive arachnoiditis relapse/ flare and treatment with IV Steroids.

UK CSF LEAK CHARITY: https://www.csfleak.info/
US CSF LEAK CHARITY: https://spinalcsfleak.org/
SPINAL CSF LEAKS: Clinical Presentation, Investigation Findings, and Treatment Outcomes of Spontaneous Intracranial Hypotension Syndrome (NHNN authors): https://jamanetwork.com/journals/jamaneurology/fullarticle/2774171
Please see this May 2018 medical paper about the 10 most common myths and misperceptions about spinal CSF leaks. It is by some of the top world experts in treating this condition.
ARACHNOIDITIS: ‘Arachnoiditis – Taming the Most Painful Pain’ Dr Forest Tennant video https://youtu.be/VGuS1iTuhLo​​
ARACHNOIDITIS: Suspecting & Diagnosing Arachnoiditis (J. Antonio Aldrete) https://www.practicalpainmanagement.com/pain/spine/suspecting-diagnosing-arachnoiditis

ARACHNOIDITIS FLARE & IV METHYLPREDNISOLONE TREATMENT – July 2022 Video Diaries

So my body decided this last week – perhaps seeing as it’s ARACHNOIDITIS AWARENESS MONTH 2022 – to completely relapse in typically explosive fashion! The full flare burst in on Tuesday following a slow deterioration after travelling a couple of hours by car to see my specialist Spinal CSF Leak neurologist (who also leads on my Arachnoiditis care) and having a neuro examination last Friday.

The neurological examination included straight leg raises, leg strength tests, reflexes, sensation tests etc.

I wonder if my body was slightly more vulnerable because I had slightly lowered my steroids and LDN over recent weeks. I often take 10mg of prednisolone if I am going on a long car journey – but didn’t this time. I only took 5mg. Then the travelling, neurological examination then the car journey the next day (as we stayed over in a hotel to break up the journey) was the final trigger to the almighty flare.

By the Saturday morning I was already feeling worse and the car journey home harder. And then things slowly deteriorated until the full symptom explosion on Tuesday.

It was so tough to be back there again – in a massive relapse – after a much better and more stable 18 months.

I am extremely grateful for the swift response of my local neurologist who supports me with the help of my CSF leak neurologist. They are the ones who treat me locally with IV methylprednisolone. She responded the same day we reported the relapse and set in motion the previous-agreed treatment plan (3 day course methylprednisolone (steroid) 1g bag a day).

Unfortunately though, the day ward at my local hospital didn’t have any beds until the next Wednesday so we tried A&E Friday after being redirected by them if I needed more urgent care. Thankfully it was unusually quiet at 10:30am and after speedy assessment I was quickly moved to a quiet dark room on GPAU (GP ASSESSMENT UNIT) and after lots of waiting, seeing a medical doctor and neurologist and after various examinations/ blood tests I was finally given the steroids at about 7:45pm that evening. I then went back on the Saturday and Sunday for the full course – which were much quicker. Those IV’s only took about 1 hour.

I am very thankful to both my consultants, and the doctors and medical staff I saw that day, who enabled access to this level of rapid care. It is my quickest treatment and acute symptom reversal to date. What used to take many weeks or months to slowly improve (& often not fully) is now is happening in a week.

Which really is a miracle to me.

I am so pleased to report that the results of the steroid treatment were again were radical, in completely reversing and turning around the flare.

Rapid treatment of flares is the key to stop further damage (nerve clumping and adhesions) and allows me to recover more quickly as I lose less conditioning – so it’s been good to find a new possible treatment pathway IF the day ward is not able to help so quickly.

To raise awareness I have made video and photo diaries from the past week of relapse symptom progression and the impact of the IV steroids (1 gram bag of methylprednisolone x3 over 3 days). My hope is that in time more people can be diagnosed far quicker than the 5 1/2 years it took me and get access to similar treatment whilst the condition is still more able to respond.

There are of course many risks to high dose and long term steroid use especially osteoporosis, adrenal gland issues and many other things. This does mean steroid treatment is not something to be taken lightly. But in my eyes – the risks to my body of further nerve clumping and adhesions in my lumbar spine that could leave me at least partially – if not fully paralysed and in constant intractable pain and thus bed bound – is a MUCH greater risk. To my body, mental health and even an osteoporosis risk in itself if I can’t walk. So the use of steroids must be carefully managed by an experienced medical team – but if they both radically improve the AA symptoms, neuro inflammation damage, quality of life, general health and mental health long term – to me it is worth the risk.

My hope is that in time as Arachnoiditis / Adhesive Arachnoiditis is more recognised, diagnosed and researched that more medications may become available that have less risks long term. This is what has happened with other neuro inflammatory conditions like MS or other inflammatory conditions such as rheumatoid arthritis or crohn’s / colitis. But that is partly because many more people suffer from these conditions and there is much more research and clinical trials done.

The new video is a 25min video in total because it includes video and photo diaries of my whole journey from relapse explosion to post IV recovery. But the information below the video in YouTube has chapter summary’s which allows you to skip through to different parts for ease and speed. And also enables people to go back to particular parts of interest.

https://youtu.be/UV8wHX26XgQ

These are the chapter summaries with timings:

  • 0:22 Day 1 of Arachnoiditis symptom explosion – back, neck, head pain, weak legs, burning feet, low pressure headache, cognitive issues
  • 2:08 Day 2 of symptom explosion – spoke to neurologist who will arrange IV methylprednisolone
  • 3:23 Key symptoms – Tingling, cold, burning feet. Walking getting worse, feet not working properly, trip hazard, neck burning/ stiffness
  • 5:25 Day 3 of relapse – Increasing photophobia, lumbar and neck pain horrendous, pins and needles everywhere, wee makes head worse.
  • 7:09 20mg prednisolone, 50mg diclofenac, 50mg pregabalin & 4.5ml LDN
  • 7:25 Video of me struggling to walk
  • 8:05 Twitching/ jolting/ electric shock sensation – take 2mg diazepam
  • 9:36 Struggling to walk up stairs
  • 10:06 Day 4 of flare – really struggling. Go to A&E and moved to GPAU.
  • 11:52 First dose of 1 gram bag of IV methylprednisolone on GPAU unit at local hospital
  • 12:23 Day 2 of IV steroid treatment including update on recovery morning after first lot
  • 16:20 Photos of receiving second dose of IV steroids
  • 16:39 Stairs walking much improved
  • 16:48 Day 3 of IV steroid treatment including update on recovery morning after 2nd dose
  • 18:58 Final 1 gram bag of methylprednisolone at GPAU unit
  • 19:05 Final update on recovery

My hope in making and sharing these videos is that awareness is raised. That patients, their families & friends, doctors, medical staff and the general public are educated and that more people with arachnoiditis can get diagnosed and treated. Especially before the condition often becomes more untreatable as it progresses.

It took me 5 1/2 years to get diagnosed with Arachnoiditis after my initial ladder fall and spinal CSF leak onset. Because of that I already have permanent damage to my spine/ nervous system. I battle constant pain, spinal fluid flow issues, I cannot comfortably sit down any more. My neurologist still believes I probably also have the small CSF leak shown on my last full protocol spinal CSF leak MRI’s in September 2019. Which probably complicates things further. My whole Intracranial Pressure System is completely dysregulated.

And yet the Arachnoiditis is still mild enough AA that I can still respond radically to steroid treatment of the acute flares. And we can hopefully now stop more rapid progression into more debilitating AA happening soon.

So I also make videos and share my story here to give others hope. Things can improve.

Please don’t give up!

It is such a hard, deeply painful, grief full, life altering journey to go on…

But an arachnoiditis/ AA diagnosis is not the end!

We are all learning together. And in time – maybe if we all can do our bit to raise awareness. To educate. To keep on fighting even when we just want to give up. Then things just might get easier for us and those patients coming behind us in the future.

So that together we can change the outcome for at least one desperate, struggling and broken soul with – or yet to be diagnosed – with arachnoiditis/ AA.

“Those who have a ‘why’ to live, can bear with almost any ‘how.’” 

Viktor E. Frankl, “Man’s Search for Meaning”

“Perseverance is rooted in hope. We persevere when we believe that what awaits us is worth the fight.”

– Sarah Walton

Please do make comments or ask questions on YouTube, here, my social media pages or on Facebook group pages and I will try to reply when I can


For the full summary of my medical history including ladder fall in January 2015, spinal CSF leak diagnosis and footage of my January 2021 arachnoiditis flare see this 5 min video.

ARACHNOIDITIS RESOURCES

‘Arachnoiditis – Taming the Most Painful Pain’ Dr Forest Tennant video https://youtu.be/VGuS1iTuhLo and ‘Arachnoiditis No Longer A Rare Disease’ https://www.practicalpainmanagement.com/pain/spine/adhesive-arachnoiditis-no-longer-rare-disease

Suspecting & Diagnosing Arachnoiditis (J. Antonio Aldrete) https://www.practicalpainmanagement.com/suspecting-diagnosing-arachnoiditis

IV STEROID TREATMENT PAPERS: Dr J. Antonio Aldrete also co-authored a comprehensive medical book called ‘ARACHNOIDITIS THE EVIDENCE REVEALED’ with a whole chapter (51) dedicated to the study of using IV Methylprednisolone in the acute stages of Arachnoiditis/ Adhesive Arachnoiditis to prevent further progression and damage. Another medical paper supporting the use of steroids in treating early stage arachnoiditis: Immunotherapies in chronic adhesive arachnoiditis – A case series and literature review https://www.sciencedirect.com/science/article/pii/S2405650221000423?fbclid=IwAR0lAuYagMPknv0pATPQ1dvOt_b0VlIEn6yxJx-DJ9o22EDb45LHJYuH9mg And another case where IV methylprednisolone was successfully used: Idiopathic Arachnoiditis of the Cauda Equina: A Case Report from Tanzania https://www.karger.com/Article/FullText/518379?fbclid=IwAR32EN7tPQD3iKOO9I8bI05ylXvuy-yjLsDyVlmESVJsW63y_j1IqAuFxDo

Seven Years Since My Accident: Spinal CSF leak & Arachnoiditis

“Life can only be understood backwards; but it must be lived forwards.” – Søren Kierkegaard

It’s now over seven years since I got ill.

Seven years… it’s such a long time right?

I never imagined seven years ago the way our lives would be so altered in one day.

In hindsight I don’t see the accident as the only culprit for these life altering diagnosis. Yes, the fall seemed to be the trigger. However, the more I have understood the conditions and my potential biological predispositions. The more I realise that it may well have been an injury waiting to happen. And if not THAT day and that fall…

It would perhaps have been another day, another trigger, that created a similar ‘explosion’ of symptoms, a leak, of an arachnoid inflammatory response.

I do have multiple thoracic micro bone spurs in my spine pressing into my dura (that holds my spinal fluid). As seen on a thoracic CT. So it was probably always going to be a risk that one day one might penetrate the dura. Or if not the bone spurs… maybe a spinal cyst (of which I have many) or some other dural weakness.

So as the quote above says … we DO often understand better backwards. Hindsight is often a great revealer – we often see things with more clarity the further on we go! And that can really help – so long as we don’t get stuck in that past, in the memories we can’t change, in the moments now passed. Instead we must choose to accept what has happened, attempt to reframe it and find the best way forward we can…

Despite it! Despite it all.

So that’s what I – what we – have chosen to do.

To reflect.

To accept.

To grieve.

Then…

Let go.

Move on.

And embrace the life we have!

I have been meaning to write this blog update for a while. Well at least since I made these last two videos for my YouTube channel. The first one I published in January is with my husband Matt and was a reflection on seven years since my original accident (a ladder fall) and trigger for the spinal CSF leak & arachnoiditis. The second video was a slightly longer video documenting how I manage my daily arachnoiditis & CSF flow/ intracranial pressure issues.

To make the videos easier to navigate I have included a breakdown summary in the video info section on YouTube. I will add a record of the video summary’s here. To to be able to skip to different parts you will need to view the video on YouTube directly by clicking on the YouTube link and take a look at the info section below the videos.

SEVEN YEARS SINCE MY ACCIDENT – A Reflection With My Husband

A reflective discussion with my husband Matt Hill about the challenges and positives of the past seven years since my ladder fall and development of a spinal CSF leak and arachnoiditis.

Summary of my accident and diagnosis. 1:00 min

1. What’s been one of the hardest parts of the last seven years? 2:18

2. What has been one of the positives of such a difficult journey? 7:00

3. What advice would you give to other spouses/ partners/ family members in this kind of situation? 9:30

MANAGING MY ARACHNOIDITIS – How I Manage My Daily Symptoms

This video is an update on my arachnoiditis/ mild adhesive arachnoiditis (AA) and how I manage to ongoing daily symptoms. I have not had a major flare in over a year but I do have many ongoing daily symptoms I have to micro-manage throughout the day to get the most out of my time.

Here is a breakdown of content you can skip to in video info on YouTube. The numbers signify number of minutes into the video:

0:28 Seven years of arachnoiditis/ mild AA

1:16 Current medication

1:57 Vitamins/ supplements/ diet

2:08 Walking physio

2:32 When people ask: How are you doing?

4:09 What does it feel like to have arachnoiditis/AA/ Spinal CSF Leak (active or in recovery)?

5:18 How did my fall cause arachnoiditis?

6:49 What does the arachnoiditis pain feel like?

9:49 CSF/ Spinal fluid flow issues

11:24 Standing is normally a better position for me

12:46 Higher Intracranial pressure (ICP) issues/ symptoms – common to those with arachnoiditis/ tarlov cysts and post spinal CSF leak

15:02 Problems with focus & concentration

18:33 How about driving a car?

19:07 Do I ever feel normal?

21:09 Do I have fears for the future?

I hope that the videos are helpful to others out there with both spinal CSF leaks / arachnoiditis or any other physical or mental health condition. It really is not at all easy navigating such conditions which is one of the reasons I choose to share my story. As you will see and have read previously, I am very blessed and privileged to have a very supportive husband, family and wider support network in our church and other supportive friends – both around me and online.

I really do believe we need others to make it through the immense challenges of these conditions.

So if you do feel alone today I would really recommend trying to find others to connect to – both around you or online through support groups. There are many groups available via Facebook groups, Twitter and other forums. Please don’t stay isolated if you do need support.

…And please don’t stay silent either.

Talking or writing really can help. Whether you show others or not. I am in a privileged position to be able to share my story publicly – others are not. But I hope that even when you can’t ‘find the words’ that my words might connect with you. So that you know you really are not alone. There are others – some better off and others worse off than you. Across the world many others are trying to find their way through dealing with and managing these conditions and their devastation on our lives.

I am thankful that in 2022 we have the internet to help us find one another so that our collective experience and voice might become even more powerful and increasingly louder – until more people are reached, understood and helped – both medically and holistically. So please do share my story with anyone who might listen – if you think it will help you and the cause in general.

Compassion and advocacy starts with you, and I, telling our stories and hoping that through them others might well be saved some of the additional pain we have had to face. We will then realise more and more that we face these awful illnesses TOGETHER and together we are surely so much stronger than trying to fight alone.

“Sit with hurting people. Offer them your presence. Show them you’re connecting to their pain. Listen to what they need. Weep with them. It won’t make them feel worse; it will make them feel welcomed into communion with you.” – Katherine & Jay Wolf

“My health may fail, and my spirit may grow weak, but God remains the strength of my heart; he is mine forever.” -Psalms‬ ‭73:26‬ ‭NLT‬‬



See this 5min video for a summary of my medical history from that ladder fall in January 2015.

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

ARACHNOIDITIS INFO: ‘Arachnoiditis – Taming the Most Painful Pain’ Dr Forest Tennant video and Suspecting & Diagnosing Arachnoiditis (J. Antonio Aldrete) and The Arachnoiditis Syndrome (Dr Sarah Smith)

A medical paper supporting the use of steroids in treating early stage arachnoiditis and in the prevention of further adhesive arachnoiditis: Immunotherapies in chronic adhesive arachnoiditis – A case series and literature review . And another case where IV methylprednisolone was successfully used: Idiopathic Arachnoiditis of the Cauda Equina: A Case Report from Tanzania or see ‘Arachnoiditis: The Evidence Revealed’ by J. Antonio Aldrete,

For more previous posts about my story of living with a spinal CSF Leak (from before we understood the arachnoiditis element) please look at the subject heading on the menu bar above.

SPINAL CSF LEAK INFO: 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.

ARACHNOIDITIS UPDATE: ONE YEAR SINCE DIAGNOSIS

A few weeks ago I decided to do a new video update on my case to mark my progress a year after I was first diagnosed with arachnoiditis, and six months since my last flare, IV steroid treatment and the start of my making videos about my case. It’s taken me a few weeks to then add to this video with this additional expanded update in writing.

Sometimes I feel like it takes ‘an essay’ to give a more substantial picture of how things are. Videos help that as I can add quite detailed explanations. However, writing can also provide a different avenue which allows further explanation and summary of how things really are.

So to start off with I wanted to share my seven minute video update, then I will expand on what I have said in that with a few more details and explanations. https://youtu.be/Qa2RwmwYTDo

As you will see – it’s very good news for me on so many levels.

Compared to how things were last year and especially around the time of the admission that prompted the diagnosis… things are substantially better in so many ways. My symptoms ‘across the board – in my head, spine & legs’ are substantially better and more controlled. I can do between 9-12 hours upright in one go and then more again after that if I lie down for 1-2 hours to rest. I walk around 7-12km a day over 2-3 long walks. My head is clearer, I do not suffer with as much fatigue or so many debilitating headaches. I have been able to travel for holiday and to visit family in the UK (although this in reality remains very hard). I can do and achieve more ‘normal life activities’ than I probably have been able to do since my accident.

However…

When you are chronically ill there are often no simple answers to explain your current experience of life. Yes I usually ‘look well’ at the moment to most outsiders. But ‘looking well’ masks a hidden reality of constantly managing what I do and can’t do. What position/ posture I can stay in, to try and get the ‘best outcome’ of symptom stability.

My daily living is dictated by constant micro & macro self-management decisions & deliberate plans to help my body utilise its abilities rather than constantly be restricted by its disabilities.

I gave up on ‘normal’ a long time ago.

Since my accident (a ladder fall) in January 2015 I have not had one day I have felt ‘normal’ … like I used to before that day I fell. A time without any neurological issues in my head & spine. I cannot even remember what ‘normal’ feels like to be honest. I watch people sitting down comfortably or relaxing on a recliner chair with their head up and think ‘how do you do that?’ It’s just so uncomfortable for me to sit or recline (unless fully flat on my side). So it’s just not relaxing! I have become used to standing, moving around, walking, being quiet, lying down. I have got somewhat used to the unnerving constant pressure and subsequent ‘dreamy/ foggy’ feeling in my head. The constant stiffness, pain, tension and pulling in my spine.

This is my ‘normal’ which is far from normal… And yet I live A LOT closer to ‘normal’ than I probably ever have done in the past six years. I have found ways and means to bring balance, symptom management & utilise my broken body to the best of its capacity.

And that has been LIBERATING!!

I am doing well for me!

A New Way Of Living

I have found ways of living that generally work with and around my limitations, frustrations and restrictions. It’s often a quieter way of life … a long way from the busy, outgoing, energetic, packed full life I used to live… but full of many things I love and value all the same.

Through accepting my limitations – and not trying to constantly ‘push against them’ I can often find a ‘way to make it work’ … as long as I am realistic about what my body and brain can do.

Understanding Empowers

Understanding and treating the arachnoiditis more has been revolutionary to more physical and mental stability in my life. My body & its many issues are much less of an enigma to me … we have more answers and I have learnt to ‘flow with’ the illness more rather than do things that make things worse.

The Problem With Staying in One Position

For instance… today I am typing this in my iPhone notes… and because I am standing, mainly in one position, with my neck slightly bent & arms raised to hold my phone… the pressure is building in my head, upper neck & lower spine, the pain is increasing behind my eyes, neck & lumbar spine until I start to feel like my head wants to burst, my ears need to pop and sometimes a wave of nausea begins to come. The pins and needles & numbness are also increasing in my legs … so I am feeling that normal ‘arachnoiditis agitation & restlessness’ increasing.

But these days I know the answer to help alleviate these increasing symptoms … it is to walk, to move around. To allow my spinal fluid/ circulation or whatever is hindered to flow again more freely.

Then I can come back to this task later.

I have learnt to accept that my concentration can only remain consistent in one position for so long. But if I learn to do things in shorter bursts – 20mins here – 30 mins there… with breaks to move around and maybe do some simple housework in between…

…then I will get more done.

It works for me because I mix any church admin, preparation or other work or admin in with general housework, standing gardening, cooking, shopping or sorting things to help my body through moving about again at regular intervals.

To some people it might look like anxious or restless behaviour… and I think I could be ‘seen’ like that by others before. But in reality the constant moving about is mainly a biological manifestation to stop the aggravation of increased physical symptoms and pain from staying in one position too long.

Other Symptom Aggravators

I have to manage bending, straining, raising my voice, singing, what I carry, how fast I walk, how long I sit, using the loo, how far I drive or travel as a passenger, fast moving images (even scrolling on my phone or on the computer can make me feel nauseous), loud noise and bright lights etc… all things that exacerbate my symptoms. So need careful management.

Walking is really helpful for my lumbar spine, legs and general fitness but it can at times also flare my head pressure – especially if I walk too fast, try talk a lot when I walk or have to look down because of uneven ground. They can all cause a pressure surge in my head and neck & make the dreamy/ strange equilibrium feelings even more noticeable. However; the benefits of lots of walking greatly outweigh the drawbacks and it has been liberating to be able to do so much more that I could a year a go.

Managing Stress

I also have to carefully manage stressful situations or hurrying about. It takes extremely fine balancing to keep myself calm in difficult circumstances. This is because stress, anxiety, a lot of pressure on me or the need to rush are extremely detrimental to my symptom stability. I believe that this is probably a lot to do with the strain it puts on my intracranial pressure system. My normal biological reactions are very hypersensitive compared with your average person.

Things That Improve My Symptoms

Include: Moving around as much as possible, walking a lot – long distances every day – being quiet when needed, resting lying down in the evening, eating healthily at regular intervals, taking medication, planning my day to include all these things in good balance. Symptom management is all about good planning to provide correct breaks from sitting or staying in one position for too long. And good rest lying down later in the evening.

Often by the evening my lower lumbar/ upper sacral spine pain is pretty awful – especially if I have done a lot of standing, sitting or bending. It feels a bit like someone has ‘grated’ or deeply ‘grazed’ the inside of my spine. Like when your flesh is raw – but deep inside me. Although this does always improve after an hour or so lying down in bed or on the sofa.

Spinal CSF Leak Update

At the moment we do not know for sure whether my spinal CSF leak is there permanently, has fully sealed, comes and goes or possibly remains and acts as a stabiliser to my messed up intracranial pressure system. I say this because I do appear to struggle with higher intracranial pressure issues as well as low ones. Which is again typical of people with arachnoiditis & sacral Tarlov Cysts. So I have sometimes wondered whether – IF the leak is still there – whether it could possibly act like a ‘natural shunt’ that helps maintain my pressure surges. Equally, it could be that the leak isn’t permanent and it heals but can return. It really is hard to know. It was last seen on my September 2019 MRIs and I haven’t had a new full spinal MRIs at my CSF leak specialist hospital since then. However, it is clear that when my arachnoiditis symptoms do flare – when I relapse – that my ‘low pressure syndrome’ symptoms get a lot worse again.

We can only theorise as to why this is. I personally think that my CSF flow becomes impeded by the inflammation and nerve clumping because it improves so radically when I have the IV steroids… and, as my neurologist said, IV steroids will not seal a leak. So we know there has to be something else going on. It could also be that the inflammation causes an increase in intracranial pressure which causes me to leak more. But there are many unknowns. A spinal CSF leak has certainly been a big part of my story and probably the initial catalyst for my ongoing issues … but there is perhaps more to the way the whole CSF system is impeded by the arachnoiditis than we yet fully understand.

In my case, I have decided with my neurologist that it’s too risky to pursue any more investigations regarding the spinal CSF leak. Because these would include CT myelograms, epidural blood/ glue patches or surgeries which have the potential to make the arachnoiditis much worse and move it very quickly into much worse adhesive arachnoiditis. So in my case seeing that my typical low ICP symptoms have improved so radically through the use of IV steroids and my ongoing drugs protocol…. in my NHS neurologist’s words … it makes the issue as to whether I currently actually still have a CSF leak or not somewhat ‘academic’. In the end, when I had a CTM in September 2017 – I badly seizured & then after the subsequent high volume lumbar BEBP a week later I was seriously unwell for weeks to months after it. I wouldn’t want to risk that again without a critical reason.

So it is no longer a risk we are willing to take. In my own case it seems that the arachnoiditis is my bigger current problem. And thankfully when we treat the arachnoiditis EVERYTHING else improves.

Current Medication

My update video gives a summary of my current medication but here it is written down:

  • 5mg prednisolone every other day (after 20mg Omeprazole to protect my stomach)
  • 4.5ml LDN (Low dose Naltrexone via private prescription from Dickinson’s Chemist Glasgow) but with the awareness of my GPs and two NHS neurology teams
  • Iron tablets (Ferrous Sulfate) due to low ferritin levels found after blood tests following hair loss)

Medication sometimes used for symptom flares or for long car journeys/ travelling (as discussed in my video).

  • 50mg pregablin
  • 2/ 2.5mg diazepam

Supplements

Turmeric/ Curcumin, B-12 & B complex, Calcium, Magnesium & Vit D, Omega 3. (Disclaimer – I do not really know which help and which don’t. I simply chose them according to my own research and in relation to the meds I take). It’s my whole medication, supplement and walking protocol that helps. I also try and eat a low carb/ low sugar and high protein (inc some meat), dairy, vegetable & fruit diet.)

Halted medication & supplements due to possibly contribution to hair loss as discussed on my video. My hair loss has much improved since coming off these and taking iron tablets.

  • Diclofenac
  • Pregnenalone (non- prescription supplement)

Arachnoiditis: A relapsing / Remitting illness

As it is very clear if you have followed my story long-term, my illness has always followed a clear relapsing / remitting pattern. This means is that usually around every 4 to 12 months I have an acute relapse of symptoms. This is shown in my case summary video. However, I can then go through months of doing significantly better. This is a normal pattern for people with arachnoiditis and adhesive arachnoiditis.

Since we have learnt to treat these relapses with IV steroids I have found I have recovered from the relapses in comparatively super quick time. In previous years it would take many many very long weeks and months for me to ‘somewhat recover’ from them. My last one (before last summer) was in April 2019 and I never got back to pre-relapse levels until after the diagnosis and treatment in July 2020. Since then I have also been recovering to a much much better level of symptoms stability and a much higher peak in what I can do and achieve than I have probably at any time over the past six years since my accident.

However, this does not mean when the illness is in a season of more remission that I am not unwell.

I am always unwell in one way or another. As I said above … I never feel normal.

I have obvious permanent damage to my lumbar spine (nerve clumping) and to the way my nervous & intercranial pressure systems function. However, what I wanted to demonstrate through these videos is how much better I have been since my diagnosis last summer and new treatment plan.

So for that I remain extremely grateful for all the support I’ve had from both of my NHS neurology teams, other local consultants & my local GP practice. It’s not been easy for them to navigate my illnesses when there is not a lot of up-to-date information on them and they are very unusual (and under diagnosed).

It helps patients immensely when they find doctors who are willing to listen, learn, be open minded and consider new diagnoses regarding their case. Especially when there has been so many unknowns about their constant symptoms over the years.

It is very easy for doctors to start thinking that you have a mainly psychological problem rather than a predominantly physical one when your case is full of unknowns. So to be listened to and believed by doctors AND those around you is one the most healing things to a suffering persons holistic health. One of my greatest underlying fears throughout my journey was to ‘be abandoned by medical professionals’ whilst in my greatest time of distress, pain, symptom severity and need. Mainly due to a lack of knowledge and understanding about my conditions. So to know I am under two great NHS neurology teams is very helpful to me.

I know in some ways I am still at the start of such a very long journey. Despite being 6 1/2 years into it. But over the past year I have felt that new empowerment to face both the past, present and whatever the future may bring in a more holistically healthy & supported way.

None of us knows what tomorrow will bring. But it sure does help when you have an arsenal of ‘medical and holistic weapons’ at your disposal & and a great team of supporters around you – to help you face & navigate the battles the future will inevitably bring.

“… there was no need to be ashamed of tears, for tears bore witness that a man had the greatest of courage, the courage to suffer. Only very few realised that.”

– Viktor Frankl

I pray that I … and you… may continue to have the courage to suffer well & suffer strong. Whatever that may look like long term. The past 6 years have at times been a nightmare to navigate and at my darkest times I was ready to just ‘give up’ on life itself. BUT… I do not feel like that now. So I have said it before and will say again… please never give up because things can change and they really can get better again! And new answers to long term questions can come in very unexpected ways!!



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

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

ARACHNOIDITIS INFO: ‘Arachnoiditis – Taming the Most Painful Pain’ Dr Forest Tennant video and Suspecting & Diagnosing Arachnoiditis (J. Antonio Aldrete) and The Arachnoiditis Syndrome (Dr Sarah Smith)

A medical paper supporting the use of steroids in treating early stage arachnoiditis and in the prevention of further adhesive arachnoiditis: Immunotherapies in chronic adhesive arachnoiditis – A case series and literature review And another case where IV methlyprednisolone was successfully used: Idiopathic Arachnoiditis of the Cauda Equina: A Case Report from Tanzania

For more previous posts about my story of living with a spinal CSF Leak (from before we understood the arachnoiditis element) please look at the subject heading on the menu bar above.

SPINAL CSF LEAK INFO: 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 Crushed Spirit” – Finding a Way Through Dark Times

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

Proverbs‬ ‭18:14‬ ‭


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

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

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

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

Another translation of this proverb says:

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

Proverbs‬ ‭18:14‬ ‭NIRV‬‬

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

BROKENNESS – WOUNDEDNESS – INNER PAIN – DESPAIR

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

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

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

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

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

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

VIDEO 1 : ACKNOWLEDGMENT & VALIDATION.

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

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

VIDEO 2: ACCEPTANCE & LETTING GO

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

VIDEO 3: CALMING THE MIND

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

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

VIDEO 4: FINDING NEW PURPOSE – Purpose in Pain

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

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

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

Victor Frankl

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

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

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

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

Ecclesiastes‬ ‭4:9-10‬ ‭

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

THINGS CAN GET BETTER AGAIN!

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

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

Henri Nouwen


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

Waves of Grief in Chronic Illness

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

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

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

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

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

The grief is real yet unwelcome.

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

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

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

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

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

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

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

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

Paul David Tripp

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

Which no longer exists… Like it did before.

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

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

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

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

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

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

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

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

Otherwise we might drown.

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

John Piper

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

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

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

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

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

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

… To continue to love and to be loved.

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

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

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

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

Paul David Tripp

Grief can pull us into itself – into ourselves.

It’s suffocating. Distressing. Disconcerting. Disconnecting.

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

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

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

That is why we grieve.

It’s in the letting go.

It’s in the feelings of loss.

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

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

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

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

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

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

Jenn Johnson ‘You’re Gonna be OK

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

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

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

Dear Doctor, From Your Naked Patient

Dear Doctor,

Perhaps we once met, perhaps we never will.

Regardless of which it is – today I just want us to try and understand one another better. Because if we can TRY to understand one another more, then perhaps we can work together to help your patients find more holistic healing and hopefully make your job a little easier too.

I decided to try and connect with your heart today, because I know that under all those important professional masks, doctor degrees, awards, uniforms, stethoscopes, sometimes fancy clothes and endless medical guidelines….

You are simply human like me.

Today, you might be my doctor and I might be your patient.

But perhaps yesterday, today or tomorrow we will equally face the same or similar challenges in our lives. The kind of personal difficulties and traumas every human faces at times. The types of trials and wrestlings that are simply common to our humanity, and a normal part of our broken world.

Maybe tomorrow you may even face the horrible illness I am facing today. Or perhaps one day you will find that one of your loved ones is in my ‘patient shoes’ – and someone else is in your own ‘doctor shoes’.

So please could we connect as equals – as human to human.

Rather than my inferior condition to your superior position. Or my entitled demanding to your service providing.

Please would you take a moment to humbly listen, as I attempt to open my heart to you today?

First, I need you to know some of my own story for you to understand me better. To know that I have been very unwell for nearly five years now. In January 2015 I fell off a small step ladder and that one moment changed my whole life. And from that moment I was catapulted into a life of constantly being someone’s patient.

Maybe being your patient.

During that time I have met some wonderful doctors who were able to connect with me, listen, and who tried to help me as much as they could. I appreciate them more than they will ever know.

They were bright lights in immensely dark places.

But most of the time I have met doctors who didn’t really understand. And some who didn’t seem to even want to try. I met many doctors who treated me as another inconvenience in their very busy day. Another form to fill and box to tick. The nameless, faceless puzzle to try and solve that day.

You see dear doctor…

I have a condition that you may not know much about. And even if you think you do know a lot about it, if you spent a couple of hours in my home listening to me and my family you would probably find that you don’t know as much as you think you do about my complex case. Even many ‘top neurology specialists’ don’t truly understand my condition – even though many of them think they do.

And because of that, some of you have unknowingly added to my pain, giving me wound after wound that I am still healing from today.

You see, for the past five years I have been battling a spinal CSF leak. Perhaps you have heard a bit about them. Patients can get them after lumbar punctures, epidural anaesthetic injections or spinal surgery. Recently more doctors are realising that spinal fluid leaks resulting from these procedures are probably more common than previously recognised. The truth about their devastation seems, in the past, to have been hidden – mainly because many doctors only knew of the classic acute PDPH (post dural puncture headache) symptoms; they didn’t know that you can be leaking spinal fluid and not be stuck flat 24/7. It’s possible that you can be upright a lot of the day, but still be very, very ill. Experiencing all sorts of other horrible, debilitating, distressing, rarely recognised and widely misunderstood neurological symptoms.

I acquired my leak from that step ladder fall in January 2015. More of that original story is here if you want to learn. All my scans – until recently – failed to show IH (intracranial hypotension) or evidence of a leak in my spine.

And yet….

Every single day since that ladder fall I have felt exceedingly unwell. I have not had one fully pain free day. I have not experienced a single day when my mind was clear and my brain worked like it used to.

I need you to know – dear doctor – that every day is a struggle for me. I have fluctuated between being bed ridden for months on end, to months of being upright all day.

And everything in between that as well.

But never well. Never normal. Never knowing the health I used to know.

I could never fully explain to you how impossible it has sometimes felt to live like this.

Recently – after more than four years – my UK NHS specialist team think they have located my CSF Leak in my cervical spine, a ventral leak, hidden at the back my dura on new MRIs. We are currently waiting for new scans to be read and reported to confirm and categorise the leak and work out a better way forward.

I was diagnosed with a suspected spinal CSF leak two months after my original fall. For a while they thought it was post-concussion syndrome – until I was finally admitted to hospital after my third trip to A&E. An understanding neurologist finally picked up on the fact my symptoms only went away lying down. Since then I have had 8 separate MRIs, a radionuclide cisternogram and a CT myelogram of my brain and spine. Until recently, they ALL failed to show any evidence of a spinal CSF leak at all.

Can you imagine how hard it is to be so very, very ill, but lack the vital evidence that definitively PROVES to you that I am leaking CSF from my spine?

I know I am as ill, and sometimes even much worse, than some of those who have the scan evidence you want to see. And yet I know that some of you still doubt me, and I know that some of you still don’t think it’s all quite true.

Even though…

  • Research shows that at least 25% of spinal CSF leak patients don’t show classic signs on their brain MRI. *
  • Medical papers show that around 50% of patients don’t show the leak on spinal MRIs.*

And yet I still often feel that I have to ‘prove’ to you how ill I really am.

That my lack of evidence is my own curse.

My own fault maybe?

I have been there with you. Lying flat in a hospital bed as you have towered over me, asking question after question, requiring me to prove myself to you. Feeling like I am a criminal standing in your ‘doctors court’.

With you as the ‘appointed judge’ over my medical destiny.

Do you know how deeply you have wounded me?

To be unbelievably and traumatically ill with a ‘apparently rare’ brain condition, and then find I also have to summon up energy (I don’t have) to ‘fight my case’ in your ‘doctors court’.

Challenging me to PROVE how ill I really am.

Do you know what damage that has done to me?

You probably have no idea how much it has affected me these past five years. How much it wears me down. How much it has infected my mental and emotional stability. How much shame I have had to carry.

Simply because in your busy, overwhelming, important – and often under-valued – job, some of you seem to have forgotten that your patients are simply human.

Just like you!

We share a fragile humanity.

I know that to some of you we are simply different diagnoses that come and go. Some more complex than others. Some that don’t quite fit the ‘diagnosis box’ you are trying to force us into. Simply ‘medical cases’ – charts, scans and notes – that walk into your busy world one day…

… never to be seen again.

Do you realise how much it messes with our heads?

The reason I am writing to you today is in the hope that somehow, I can re-connect with your human heart. Maybe – just maybe – we could get better at understanding one another again. So that we don’t have to end up with all of these painful misunderstandings and confrontations, which can sap your energy just as much as mine.

I know as patients we also need to realise that you are only human too.

That you are not ‘miraculous supernatural healers’ that can defy the laws of medicine, physics and nature. You are simply humans, trying your best to help other sick humans heal up and get well. Many of you wish you could do more for us – not less. You are bound up by the ‘system’ that controls you, by ‘modern medicine’ with all its exhausting bureaucracy, targets and restrictions. We know that there are those of you with equally broken hearts who wish you could offer us more than you do.

I am sorry that we sometimes forget that you are human as well. When we get lost in our own vulnerability, shame, pain and confusion and lash out at, and blame, you unfairly. I am sorry when we also fail to treat you with the kindness, compassion and gratitude that you deserve, as you work with systems that often overwhelm you and bring you crashing to your own exhausted knees.


But today, I can only speak from what I know. I can only try and share from the heart of a very broken patient, who knows that things really do need to change.


You are all overworked and overwhelmed in many ways. And yet some of you seem to be more connected to your own humanity than others. Some of you seem to know how to connect with your patients heart to heart. Some of you achieve this despite all the many challenges of your role.

So I want to say thank you. I know that you are the ones listening to me more openly today.

Recently I have been thinking more deeply about what ‘being a patient’ can feel like for us and how to try and help you understand more – dear doctor. Especially for those of us stuck lying completely flat in a hospital bed due to a spinal CSF leak.

But also as A VOICE for your many other patients as I try to explain what it feels like for us to enter your normal vocational world.

You see, for you, the hospital is your workplace. For us, it’s often an immensely distressing place.

We are not normally there by choice, but because we know that there is no other way to get well than to come to you. So when we enter your ‘hospital work place’, we often feel so vulnerable, so confused, so distressed, so exposed, and often in so much pain.

One way to describe it to you is that we feel like we are metaphorically simply naked and exposed for you all to see.

You may not have ever been a deeply vulnerable and distressed patient yourself – so we know it’s hard for you to fully empathise and understand – but if you want to try and understand us better when you come to see us…


Can you take a moment to imagine and picture what it would feel like if it were you lying on that hospital bed, fully naked – so exposed, vulnerable and ashamed – with absolutely nothing to cover you up?


Our own masks, worldly titles, fancy clothes, make up, hairstyles and badges of honour have ALL been snatched or stolen away. So we are subsequently feeling so cold, so messy, so vulnerable, so distressed, so confused and so naked – whilst you are simply getting on with your daily grind in your normal place of work.

Please be kind to us. Please be patient with us. Please listen carefully to us. Please TRY to understand us.


Don’t stand at the foot of the bed and tower over your patient – she feels small already – take a minute, sit down, listen…Try to understand. Realise you will never understand. Try anyway.”

– C. Sebastian*

Dear doctor, we feel small already… please don’t make us feel even smaller.

In our smallness you can often appear so big, so important and so intimidating. You are covered in all your doctor masks, doctor clothes, doctors badges and medals of honour, and talk with your important-sounding ‘doctor speak’.

Sometimes we don’t even understand what you are saying.

Because you are not talking to other doctors; you are talking to your naked patient who already feels so very small and so very stupid lying down in that hospital bed.

Please listen carefully to us before you attack and accuse us of not feeling as ill as we say. Please open your minds to the fact that just because we don’t fit your boxes, it doesn’t mean we are not truly very, very sick.

You are meant to be our healers – not our accusers.

Dear doctor, you should know that after leaving your hospital or doctors office and perhaps never seeing you again, over the past five years I have experienced two intensely excruciating complete mental health collapses. I have also found myself close to those places again and again.

And in those places – normally when I completely relapse physically, I stop sleeping and have no energy to fight anymore – in those places, all of my traumatic memories of encounters with intimidating and insensitive doctors return to me. I picture you as scary ‘doctor-judges in the medical court’, and I don’t have the energy to try and ‘prove myself’ to you again, and face getting my case thrown out with the lack of suitable evidence.

So I want to just give up.

Dear doctor, did you know that in those dark and distressing places my broken and exhausted mind decides that death might be my only way out. The only escape from the constant battles. The only way to end the never-ending fight. The only way to stop having to defend and prove myself again and again to another intimidating ‘doctor-judge.’

Did you know that your insensitive words and actions one day could indirectly contribute to my death?

Do you realise how serious that is?

You see, when my impossible medical journey pushes me to places beyond what I can endure, when my mind packs in and my body breaks down due to the immense stress and strain of daily battling a debilitating and distressing misunderstood neurological illness year after year…

I end up feeling more broken, more vulnerable, more distressed, more naked and smaller and smaller than ever before.

I feel like a worthless and insignificant judged ‘chronically-ill’ nobody. Who just cannot get well. However hard I try.

Dear doctor, I then need you to know that I need you to see me as…
Just another naked and vulnerable human patient…

…. looking for someone to help cover me up. Someone who can put a blanket of compassion, kindness and hope over me so that I won’t feel so very very cold, ashamed and completely overwhelmed from the fight.

You see…

I am your naked patient.

So please understand that in my nakedness, all I can see is all your importance, all your knowledge, all your intimidation, all your doubts about me and my case, all your intelligence and words I don’t always understand.

So you scare me!!!

I can no longer see your equal humanity; I can only see my naked inferiority beside your beautifully adorned superiority.

So dear doctor, please be gentle with me. I am not as strong as you think. My heart has been broken and wounded again and again. Some days I just think I will sink.

All I see is my broken humanity. All I see is my naked vulnerability.

So dear doctor, today I wanted to connect with your heart. I wanted to try and reach you, human to human.

As your equal.

To please ask you…

When I feel that naked, the best way to help me is to remember that underneath all of your adorned and celebrated doctor-robes, you are just a naked human too. You may not feel it so much today… or even tomorrow. You may not really ever understand what I am actually trying to say.

But please try and imagine yourself as that naked patient, lying in that hospital bed. And think about how you can move a little closer to our inflicted lowered level and status; to sit down, to listen, to try and understand…

Whilst realising you can never fully understand.

But please do TRY anyway.

Because one day…

That naked patient…

Might be you!

And then you will want to meet a kind and gentle doctor, who can also relate and connect to your vulnerable and exposed naked humanity.

And I hope that they will try to bring you more holistic healing….
Rather than inflicting wound after wound after wound... that can sometimes be even harder to heal from than the original condition over which you met.

Sent, with heartfelt tears, gratitude and deep respect for your willingness to listen and learn,

From,

Your naked patient


“Don’t stand at the foot of the bed and tower over your patient – she feels small already – take a minute, sit down, listen…Try to understand. Realise you will never understand. Try anyway.” – C. Sebastian

*Quote from this beautifully insightful TED talk on encouraging ‘Narrative Humility’ in the medical profession.
Narrative Humility: Sayantani DasGupta at TEDxSLC youtu.be/gZ3ucjmcZwY

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

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

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

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

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

*Please see this 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.

*Please also see this other in depth 2018 medical paper 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.

Rising Again: A Year Of Spinal CSF Leak Improvement

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. Despite improving so much the year I wrote this – I wasn’t fixed. To read more about the new diagnosis please see this link.

“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 more successful treatment.

The wonderful news is that – a year on from my seemingly 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.

Rising Again verse copy

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.

Rising Again copy

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.

This other in depth 2018 medical paper is about both low and high intracranial pressure syndromes and their similar and different symptoms. It also mentions cross overs with other headache types. When a patient suffers with a spinal CSF leak long term it can cause massive fluctuations in their whole pressure system both whilst suffering from a spinal CSF leak and following treatment. This is why lumbar puncture pressure readings and ICP pressure monitoring can prove an inaccurate diagnostic tool for SIH (low pressure) and RIH (rebound high pressure) as this paper refers to as does the 10 myths paper. My initial LP in February 2015 reading was a 7 which was considered ‘evidence’ of low pressure by some doctors and normal by others.