Tag Archives: Brain injury

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.

ARACHNOIDITIS RELAPSE AUGUST 2023 WITH ACUTE LOW PRESSURE HEADACHE FLARE – What is the connection?

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

Sadly, following just over a year with much more ‘stable baseline’ arachnoiditis/ CSF leak symptoms…

I finally succumbed to a new flare.

Another relapse.

And it was again … BAD.

Bad enough that a 10 day course of 40mg prednisolone (oral steroid) hardly touched it….Took the edge off maybe… But certainly couldn’t stop it!

That is the power of my arachnoiditis flares. Once established – they seem untouchable to halt.

… Until we use the IV Methylprednisolone 1g a day x3.

Until we hit the inflammation HARD & FAST.

That’s the only thing that seems to stop it in its tracks and subsequently reverse the relapse process… back into recovery.

I have again documented this flare with a new YouTube video (see below) made post IV treatment. But it includes some footage from the flare itself.

I make these videos to raise awareness, to educate, to continue to tell my story, inform others of my progress and also to process my own trauma.

Because it’s always traumatic.

To feel that abhorrently unwell. To feel so vulnerable and out of control. To be brutally reminded of the nightmare of dozens of previous relapses … and especially the trauma of the memories of the ones from before…

… from before we knew about the central nervous system inflammation. About the Arachnoiditis that seems to have been there from the start.

Hiding in plain sight for many years.

Before we understood – about the arachnoiditis inflammation and the way these flares always seems to take me right back into my acute low pressure/ spinal CSF leak symptoms.

Before we understood ALL that … I just had to endure, hold on and attempt not to deeply despair at the horrendous symptoms in my whole brain, spine, nervous system and whole body. That take me over and force me back to bed. Pretty much all day every day. And back then we didn’t really know how best to treat it. So I would often be like that for months.

It is easier now.

You see I have a ‘plan’.

The support of two great neurologists at two NHS trusts who work together to ensure I get access to the best treatment as fast as we can.

Also the oral prednisolone 40mg DID help! They stopped terrible symptoms getting totally and utterly unbearable with ‘relapse lightening speed’. But it couldn’t stop it. And the day I did stop it to have the IV later on. My symptoms crashed in super quick time.

RELAPSE TRIGGERS

The relapse started after a mix of long car journeys to see family across the U.K. Then on top of that walking into a door frame, bashing my knee HARD and jolting my spine. Thankfully I happened to have a follow up telephone appointment with my CSF leak specialist neurologist the day things really took a turn for the worse – so that really was helpful and another undeniable moment of divine providence I am so grateful for. So he recommended we ask my local Neurologist to arrange the IV. As is the arrangement. As is my medical protocol already established over the past 3 years.

This is my 4th IV in 3 years since I was diagnosed with arachnoiditis. Although in reality it’s always been there since my fall from a ladder in January 2015. That’s what my MRI’s show from March 2015 and that’s the story my symptoms tell me.

It’s always been the same story. From day 1 until now. The same pattern of the initial illness to every relapse ever since. Although my lumbar/ sacral/ leg/ feet/ bladder symptoms have got worse over the years too.

I had the IVs Methylprednisolone 1g Thursday 24th – Saturday 26th August 2023 on GPAU (General Practice Assessment Unit) at my local hospital.

And I am thankful to report that I am now doing a lot better.

It normally takes a couple of weeks to truly get back to ‘my normal baseline’ symptoms. And today as I am writing this we are two weeks post start of the IV. Nearly 4 weeks since this all started. I have just finished the prednisolone taper from 30mg down to 5mg and have just returned to 5mg every other day. Today is my first steroid free day in about 3 1/2 weeks. Although I have taken 75mg diclofenac today to cover me as I try and phase out the steroids back to my normal 5mg every other day. I have also recently returned to my normal 4.5ml of LDN. (Low Dose Naltrexone). (Just to note I also have had to use Zopiclone (sleeping tablet) 7.5mg at night when on higher dose steroids. Although my sleep is now improving again too).

I am finally beginning to feel like ‘my normal’ is pretty much back – give or take a slightly more spacey head at times. But that is also improving each day.

I am back to walking over 10k steps a day and doing lots around the house to keep me moving about. I am also slowly introducing more going out a bit further and will start driving short distances again soon.

So it’s good news.

It came.

It took me down.

We fought back.

We conquered.

I am recovering.

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

For all this I am extremely thankful. To have diagnosis’. (Arachnoiditis & a Spinal CSF leak). To have neurology support at two hospitals. To have a treatment plan that works. To have GP’s who understand.

It all helps so much. The major battles are already fought and won. I have my treatment plan and supportive doctors in my corner. But in reality there are always many small battles along the way. Making lots of calls, sending lots of emails, following up and explaining things again and again. Reminding medical staff I have to lie down as it can’t sit comfortably and can’t be upright at all early on in a flare. Lying down in the car to get to hospital as I cannot tolerate sitting up. Lying down in waiting rooms – hoping for enough chairs together that are free. Otherwise we carry a yoga mat for me to lie on the floor without getting completely dirty. Then there is the chaos at home of me not being able to do things … although even that is easier now my girls are 16 & 18 and can help so much more.

For all the easier things about my story I know I am blessed. I am one of the fortunate ones. Because this level of openminded medical support can be unheard of in the lives of people with suspected or actual arachnoiditis or AA (adhesive arachnoiditis). Still my doctors are all learning with me. But as we learn together the support gets more solid, more understanding. Which really does help counteract the trauma of many years of ‘doctors not understanding’ (as I wrote about so vividly here after counselling.)

So that is why I continue to share my story. I don’t take my privilege for granted: I try to raise awareness. To educate doctors, patients and family and friends. To connect with you in your immense struggle, confusion & despair. To show you ways and treatments that ‘might’ help you too – if you can find the right doctors to help you. To implore you to just keep ‘holding on’ … for years if that’s what it takes (like in my case)… because things can still get better in the end. There is always hope.

Everything I discuss in my videos is based on personal experience, years of symptom observations, plus my own research and listening to others stories. My experiences are unique and thus uniquely managed by my two neurology teams and two different Midlands UK NHS hospitals. So I cannot comment or offer any medical explanations, advice or diagnosis to others. I only share my own story in the hope it may help others on their unique journeys to more answers. I can only answer your questions according to my own limited experiences and the research I have done.

But from what some of you do tell me – sharing my story can help right? Just to know that somebody – somewhere – sometimes across vast oceans ‘gets it’. That they understand your deepest struggle, your most excruciating pain. The daily overwhelming choice to try and keep on finding ways to live despite the constant trauma, questions, confusion, misunderstandings and the deepest of pains.

So today I write to remind you that I really do understand. But these days – more than ever – 8 1/2 years on. I am learning to find a way through it – dare I say – to even THRIVE.

For these reasons my videos and articles are all fully public and can be shared with anyone, by anyone, on any platform. I also write to make translation easier because I know many non-English speakers are keen to follow my story too which is harder with the videos.

So here it is – here is my new video, I have included a content summary below so that people can more easily skip through and find the parts they are interested in.

WHY DO MY LOW PRESSURE / SPINAL CSF LEAK SYMPTOMS GET SO MUCH WORSE DURING MY ARACHNOIDITIS FLARES?

The video documents my recent arachnoiditis flare in August 2023. During this video I also consider the question as to why my low pressure headache/ spinal csf leak symptoms get equally acute during the flare. How does the increase in the inflammation and the physiological mechanisms at play cause me to revert to such distinct Spinal csf leak symptoms? As has always been the case in my medical history over the past 8 1/2 years since a ladder fall in January 2015.

In it I present some theories of my own as to why this happens so radically including:

  • I leak more due to higher pressure from inflammation
  • I seep more from the adhesive area or via my compromised Dura in that area.
  • The inflammation blocks my spinal fluid flow causing radical changes in ICP.
  • Or the one I discuss most in this video: that the inflammation pulls at my spinal cord – especially if the more adhesive area is trying to adhere further. Subsequently, bringing an increased ‘tethering sensation’ to my spine. Pulling my brain stem to create that ‘brain sag’ affect – the feeling of ‘my skull being pulled into my neck’. But then also ‘my sacrum being pulled into my lumbar spine’. Could it be that this process then blocks flow too? Causing very real sensation of my spine being tightened and clamped at my neck and sacrum which further supports this theory. Also interestingly I had some people who had previously had surgery for ‘tethered cord syndrome’ comment on one of my ‘bizzare symptoms’ videos telling me that my symptoms sounded like I had a tethered spinal cord. To which I replied – that would make sense if I have AA. Which everything points to me having – at least mildly.

But they are all just ‘theory’ because not enough research has been done. Not enough patients have been studied to really know. Although the more years that go on … the more I realise there is a lot of ‘medicine’ that is about hypotheses and theory. Although then there is the force of science that wants that evidence and proof to back it up.

But I guess that there is a sense in which – I am the evidence. My medical history, scans, test data and response to treatment are all part of ‘the science of my story’. Even if I may be a bit of an anomaly.

Please do comment, reply & let me know if you have any similar experiences – especially if you have both arachnoiditis / AA as well as a spinal CSF leak. Do you find your low pressure / spinal CSF leak symptoms get increasingly more acute when your arachnoiditis is flaring? Do steroids or anti-inflammatories help you too with all your symptoms?

The more we talk and discuss – the stronger our theories can become. So it helps me to hear your stories – as much as your hearing mind hopefully helps you.

  • Content Summary so video can be skimmed through.
  • 0:12 Relapse Intro
  • 1:06 Post flare recap
  • 1:52 WHY DO MY SPINAL CSF LEAK/ LOW PRESSURE SYMPTOMS
  • GET SO MUCH WORSE DURING MY ARACHNOIDITIS RELAPSES?
  • 2:00 Low pressure/ spinal CSF leak symptoms
  • 3:48 Explaining my acute low pressure symptoms during relapse
  • 5:50 Taking 40mg oral prednisolone (steroid)
  • 6:03 My legs are not working properly
  • 6:50 Relapse cause/ triggers: car travel then jolting spine
  • 11:38 Follow up call with Neurologist
  • 13:40 IV Methylprednisolone 1g IV x3 days on GPAU
  • 14:40 Do high dose steroids increase ICP?
  • 16:40 2 week prednisolone taper from 30mg to 5mg every other day normal dose
  • 18:42 Can you relate? Do you get similar symptoms? Please do comment or reply.

Please remember that all videos and articles can be shared with anyone, by anyone, on any platform. As they are all in public realm.

So this is where I say ‘goodbye for now’. I am sorry I don’t update my blogs and videos as much as I used to. But to be honest I often just don’t have the time or energy. I like to do this. I like my story having a wider purpose. But it is also a challenge to achieve amidst even my mildest daily symptoms. So forgive me when I don’t write or make videos for a while. It’s normally because I am just ‘trying to find ways to embrace the life I have.’ And thrive as much as I can within all the restrictions, pain, limitations and debilitation.

But I do want to end by saying…

THANK YOU!

Thank you for listening. Thank you for taking the time to enter into my world for a moment. Thank you for your grace and kindness in bearing with my ponderings, wrestling’s and many questions.

You are appreciated. You are valued. And you are loved.

“When we know we are loved we find it easy to love other people” John Sentamu



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

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. 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.

24 BIZZARE ARACHNOIDITIS & CSF PRESSURE SYMPTOMS

In this new blog post I want to introduce you to two of my videos, made in the past year, that attempt to describe some of my stranger or more ‘bizarre’ symptoms and how I manage them. The videos mention 12 symptoms each. So I have titled this blog post ’24 bizarre symptoms’ although there is certainly some overlap in some of the ones mentioned. This is by no means a definitive list – simply an attempt to list around 12 at a time to try and connect with others suffering and raise more awareness of these conditions.

Some of the symptoms are also more ‘bizarre’ than others.

Although they are all my normality.

I have been diagnosed with arachnoiditis (mildly adhesive) and a spinal CSF leak. I continue under the care of two UK NHS neurologists at two midlands NHS hospitals. They work together to oversee my care and my ongoing treatment with oral and IV steroids as talked about in previous articles.

People with spinal CSF leaks, arachnoiditis, AA (adhesive arachnoiditis), tarlov cysts and other similar conditions regularly comment on my videos on YouTube or via my social media posts on the videos. When people have watched these two symptom videos, they often express that they experience all these symptoms, or many of them, and appreciate me trying to explain what they often find so hard to put into words.

That is the privilege of being something of a public communicator and having the ability and capacity to both write and make videos. I have thus found an opportunity to be a public voice for people who often feel like they have no, or a very little, voice.

It actually also encourages me when people comment or reply because we can then share those ‘me too’ moments. There is always a deeper community discovered in the mutual understanding and experience.

We feel less alone when we meet others like us.

I am also well aware that I am in the very privileged position of currently not being so severe as others symptomatically. I regularly hear from people who are mainly stuck in bed or who can hardly walk at all – due to a leak or AA. I never take for granted how functional I currently am – when not in a flare/ relapse. However, I have also certainly known debilitation that has left me bedridden for months at a time. I have also known excruciating 24/7 pain – not only when upright – but all day and all night due to the arachnoiditis flaring on top of a leak and ongoing CSF pressure and flow issues.

So although my case may currently seem comparatively mild compared to others who can only dream of being upright most of the day or walk 10k steps each day. I have certainly tasted of much worse than this, and still occasionally end up back there when I do flare/ relapse. And who knows where things will progress in the future…

… and in that regard I have to train my mind not to dwell on the fears of the unseen and the unknowns of the future. There is always hope – and we never know what medical breakthroughs might one day arise.

“Today is mine. Tomorrow is none of my business. If I peer anxiously into the fog of the future, I will strain my spiritual eyes so that I will not see clearly what is required of me now.”

– Elisabeth Elliott

I do remain exceedingly grateful that we have found a way to manage and treat the arachnoiditis, in particular, that has improved my quality of life so much and also is hopefully stopping a much quicker progression into more severe AA.

So I again write this article with compassion, empathy, love and gratitude. For where I am at – and the privileged position I am in – yet also mindful of the even worse acute pain some of you are living with each and every day. I do understand and relate in so many ways. Even when our stories might be quite different.

These symptom lists should show – although I am comparatively functional – I am still immensely restricted. Nearly every part of my life is impacted by the need to manage this condition – to stop the pain, immense challenges and restrictions overwhelming me.

There is a sense in which this ‘symptom profile’ is just my daily normality. You really do just get used to it to a certain extent! However, sometimes voicing and listing them can also be liberating, in allowing my mind to recognise the immense difficulties in living this way.

Even typing this at the moment on the laptop is an endurance test…

My lumber pain is building to intolerable levels, as is my neck pain. The metaphoric clamp in my neck and sacrum is being tightened, my spine feels so ridiculously tense and pulled. My legs are getting increasingly tingly and feel weird. I am becoming more and more aware of the discomfort of my feet touching the ground (as it is still slightly easier to use the laptop standing). My head is getting increasingly full, and the tension from my neck is extending to a band like tension behind my eyes. My eyes hurt, my concentration is beginning to fail as my head feels fuller – and reality becomes more cloudy, hazy and distant. My body is also feeling increasingly overwhelmingly hot as I try and push through another sentence or two.

And I have only been standing here typing for about 20- 30 mins max.  

That’s how restrictive this is. Gone are the days of working on a computer all day or sitting down for extended times to work.

That is no longer possible for me.

So for now I will have to step back from this for a time, to move around, go for a walk… anything but endure the pain, distress and nausea I am subjecting my body to in pushing through to write for 20- 30mins.

So bye in this moment… I will be back again soon.

…………..

So 40 mins on since I wrote the above – I have moved around more again and went out for a 20-30min walk. As I left the house my head was so full and things felt more distant and intense. As I walked I felt really sleepy and was constantly yawning for about the first 10 mins and my ears, crackled and popped as my pressure attempted to equalise more. It never fully does – my head is always full of pressure to a certain extent – but after about 10-15mins I found I was yawning less and focused on walking more.

To be honest – many of my long daily walks are like taking medicine or doing physio. They are a need rather than always enjoyable. Something that needs to happen – even when much of my body would probably prefer to lie down in bed or lie on the sofa and watch TV. But I have learnt that walking is better for my body, mind and symptom management. The reality is that I could probably relax at first lying down … but the longer I do so, the more likely I will get an awful headache lying down too. Especially if I try and do anything like write on my phone, read or edit videos.

It’s the vicious circle. The constant need to change position. To move about as much as I can.

So for me – earlier in the day – the more walking the better. Because later on – I will probably just not have the energy any more. And walking when it’s dark (especially in the winter) is never so good.

It’s a challenging life. But one which I try and make the best of.

Some days I do love to walk. I am so grateful to still have that ability and for the nature, trees, sky, beauty and for those moments alone to think, pray or listen or to talk with a friend or loved one.

Other days I only do so because I know I must.

Like taking a horrible medicine or exercising when you would rather be in bed.

Because I do know it helps me – a lot. And one of my greatest desires is to help myself manage all this as much as I can.

But it IS exhausting living like this.

But so much better than the alternative – the days of being housebound and stuck in bed.

So I must remember to stay grateful for each and every step and the freedom they bring.

So there again is a written glimpse into some of the challenges I face each and every day. However, for now the time has come to move from written – to spoken words. To share my two videos on some of the multitudes of symptoms I experience daily.

What is caused directly by the arachnoiditis/ AA, what is a small leak still there, CSF flow issues or CSF pressure issues. I cannot always say for sure.

We ‘chronically ill’ spend much time deliberating, analysing and wondering what causes each and every symptom. Sometimes, over time, the picture becomes clearer – albeit still somewhat muddled.

This is my own unique experience and interpretation of the strange sensations in my broken body.

But I must add a disclaimer…

‘Who really knows’ what is what or why and which is from what?

Does it always truly matter anyway?

I have come to see and learn that this is a big part of medicine itself – hypothesis, analysis, deliberation & discovery. Sometimes the evidence does provide an explanation. Sometimes we are left with only theory and wonderings. Especially in conditions that are poorly understood, recognised or researched – like mine are.

VIDEO 1: APRIL 2022 -12 BIZARRE ARACHNOIDITIS & CSF PRESSURE SYMPTOMS – Including my Covid and holiday flight experiences

In this video I discuss twelve of my most prominent – but bizarre – daily symptoms. I also seem to suffer with some high intracranial pressure issues these days as well as possible low pressure – but it’s confusing as to which is which and after 8 years of suffering since my accident (a ladder fall). So all I am really clear on – is that my whole intracranial pressure system is completely dysfunctional and unbalanced in many ways.

I also update on my case including: Having Covid in March 2022 and flying to Mallorca (2 1/2 hr flight) for a family holiday in April 2022.

Video content Summary:

  • 1:40 – Having Covid March 2022
  • 4:23 – Family holiday to Mallorca Spain including flight
  • 7:50 – 1.I have felt drunk for seven years
  • 9:19 – 2.I usually feel weird: pressure & pain
  • 10:48 – 3.Stiffness, stuckness & pulling sensation in my spine (11:48 Tarlov Cysts)
  • 12:09 – 4.Sitting down aggravates all my symptoms & legs go numb
  • 14:17 – 5.When I sit I am better leaning forward on hard chairs or with a wedge cushion
  • 16:50 – 6.Standing in one position too long makes me feel really ill
  • 18:25 – 7.I constantly feel compelled to move around
  • 20:35 – 8.I get headaches & feel groggy in the nights & in the morning
  • 22:09 – 9.My skin often has crawling pins & needles sensation
  • 24:00 – 10.Going for a wee makes my head worse
  • 25:54 – 11.My head is very hypersensitive to any ICP (Intracranial Pressure) changes
  • 27:52 -12.My eyes & brain are supersensitive to lights & moving images

VIDEO 2: FEBRUARY 2023 – 12 MORE BIZARRE ARACHNOIDITIS & CSF PRESSURE SYMPTOMS: Including a case update

In this video I discuss twelve more of my most prominent – but bizarre – daily symptoms.

Video content Summary (sorry some of the numbers got mixed up):

  • 2:58 – Case Update
  • 5:12 – Current Meds
  • 6:14 – Walking still helps
  • 7:56 – 12 More Bizarre Symptoms intro
  • 8:32 – 1. Hypersensitivity to stress & intense emotion
  • 11:10 – 2.Feeling like I have a clamped steel rod in my spine
  • 12:16 – 3.Stiffness & pulling in my neck
  • 13:46 – 5.Crouching really flares my symptoms
  • 16:49 – 6 Speed bumps make me feel really ill
  • 18:32 – (4)Moving images makes me feel really sick
  • 19:20 – 7.Hypersensitivity to noise
  • 20:33 – 8.My ears regularly crackle & pop
  • 21:52 – 9.Bladder urgency & retention
  • 23:20 – 11.Have to carry bags into me
  • 25:14 -12.Lie on my side with pillows
  • 26:00 – (10)Log roll in and out of bed to protect spine

So there is another 24 of my strange – often bizarre – symptoms. Most of which have always been there the whole 8 years. Others which have developed or at least worsened over those years. It is by no means an exhaustive list. So maybe sometime I will add some more…

For instance I could mention how the sensation / neuropathy issues in my feet have gotten somewhat worse. How I can no longer tolerate walking bare foot or with just socks on around the house. How the sensation is both impaired yet also gives me differing levels of pain & discomfort. Or I could tell you about having to choose what I wear carefully. How certain clothes, fabrics or styles are hard to tolerate on my hypersensitive skin these days. Or finally I could lament the fact that my body is often hypersensitive to pain and touch. This gets acute in a flare – but to a certain extent it’s constantly there.

But for now 24 is more than enough to welcome you into my daily world.

And I will finish by asking – what about you?

Some of you have already responded and commented and I appreciate that so very much. I am always very willing to listen and learn from your own experiences too. Can you relate to my descriptions – even if your case is worse – or even milder than mine? Please do comment or reply so that we can all continue to learn together.

For together always has more strength than standing and speaking alone.

Even the weak become strong when they are united.

– Friedrich von Schiller

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

The Arachnoiditis Syndrome – Dr Sarah Smith UK https://arachnoiditis.co.uk/index.php/information/medical-papers-2/124-the-arachnoiditis-syndrome-dr-sarah-smith

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

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.

NEW VIDEO DIARIES: ARACHNOIDITIS & SPINAL CSF LEAK RELAPSE/ FLARE

“I alone cannot change the world, but I can cast a stone across the waters to create many ripples.”

– Mother Teresa

At the end of January I had another horrendous relapse / flare of my arachnoiditis/ mild adhesive arachnoiditis & spinal CSF leak symptoms. Although I had experienced some pre-warnings in the weeks before, on Thursday 28th January my symptoms again exploded so acutely that I knew I needed to access another 5 day IV methylprednisolone ASAP, as previously agreed with my more local neurologist if that happened. It unfortunately still took a week to arrange for me to receive it at the local day case unit, especially as I really wanted to avoid going via the ED due to Covid and hospital pressures. It was also the first time of these arrangements being actioned which meant it took a little bit more time.

So as I waited at home as we and my wonderful GP team chased the hospital and my consultant to make arrangements for me ASAP, my husband and I made the decision to film what happens to me when I flare / relapse, and how I responded to treatment – as an open education and awareness project for other patients and their family and friends, as well as any doctors who may be open to listen and learn more about arachnoiditis and spinal CSF leaks.

We mainly decided to do this because when doctors, patients and the general public do not understand these conditions it causes us sufferers so many many problems in being ‘heard’ and accessing treatment. Also – as anyone can see from the videos when I am in a flare – things deteriorate dramatically in a week. Arachnoiditis/ AA flares should be treated as a MEDICAL EMERGENCY if doctors want to stop more permeant adhesions from forming – which could ultimately lead to paralysis, partial paralysis, incontinence and irretractable pain syndrome.

So I cannot stay silent!!

Without my IV steroid treatment, steroid taper and ongoing every other day 5mg prednisolone (steroid) and 75mg diclofenac (anti-inflammatory) & 4.5ml LDN (low dose Naltrexone via private prescription), I have no doubt the adhesive arachnoiditis would have moved into more severe categories over the last two flares.

It thus felt time to branch out into videos to complement my writing in this blog.

So I have a YouTube channel now packed full of educational videos showing my flare, talking about symptoms and how I have done in recovery since. I will keep updating my channel to talk about my progress or new things I am learning about that are relevant to the condition.

Here are some of the relevant videos and links:

This is my case summary video that was reviewed by a NHS Consultant friend before I posted it. I wanted to create a short summary of my whole medical journey that would also be of interest to doctors to and could be used as a presentation in their educational meetings and lectures if relevant.

Here are a few other videos from each section and a link to each ‘playlist’. All the individual videos can be found on my YouTube channel.

I will now add one or two key videos from each list here:

ARACHNOIDITIS FLARE DAY 2 SYMPTOM EXPLOSION
ARACHNOIDITIS FLARE DAY 6 WHOLE BODY HORRIFIC PAIN EXPLOSION
IV STEROIDS DAY 1 AT HOSPITAL DAY CASE UNIT
IV STEROIDS DAY 4 AT HOSPITAL DAY CASE UNIT
FINAL DAY (5) OF IV STEROIDS. IN THIS VIDEO I ALSO DISCUSS MY ISSUES WITH SITTING DOWN AND HOW I DO SIT. I ALSO TALK ABOUT HOW GOING FOR A WEE MAKES MY HEAD WORSE.
STEROID TAPER DAY 1 & STORY OF 2017 FLARE & SEIZURE FROM CT MYELOGRAM & FLARE FROM 40ML EBP
DAY 10 OF STEROID & ANTI-INFLAMMATORY TAPER PLUS INFO ABOUT RESIDUAL SYMPTOMS AND MILD SCOLIOSIS
DAY 12 OF STEROID & ANTI-INFLAMMATORY TAPER PLUS INFO ABOUT PAST RELEVANT RADIOLOGICAL FINDINGS OF TARLOV, SPINAL/ BRAIN CYSTS, BONE SPURS & OTHER GENETIC NEUROLOGICAL ABNORMALITIES INCLUDING POSSIBLE MARFAN SYNDROME.
DAY 3 OF NORMAL ALTERNATE DAY STEROID & ANTI-INFLAMMATORY PROTOCOL. (5mg Prednisolone & 75mg diclofenac). THIS VIDEO ALSO INCLUDES INFORMATION ABOUT MY APPROACH TO ANTI-INFLAMMATORY AND COLLEGEN BUILDING DIET & NUTRITION.
Year update added in July 2021

That should be enough videos to give someone more of an introduction to my new educational and awareness project. I have learnt a lot over the past six years about my two radiologically confirmed diagnoses, even though I only knew I had had arachnoiditis all along too since July 2020. (It can now be seen on my original 2015 MRI’s 3 months after my accident and before any of my spinal procedures. I also experienced symptoms of arachnoiditis as soon as my symptoms came on after my ladder fall in January 2015).

PLEASE NOTE: ALL MY VIDEOS & WRITING ARE FULLY IN THE PUBLIC REALM AND CAN BE SHARED IN ANY CONTEXT OR PLATFORM WITH MY FULL PERMISSION. MY ONLY DESIRE IS THAT PEOPLE LEARN FROM MY CASE SO THAT OTHERS DO NOT HAVE TO SUFFER SO VERY MUCH FOR 6 YEARS TO GET RADIOLOGICALLY CONFIRMED DIAGNOSIS. SO PLEASE DO SHARE THEM WIDELY!

Thank you to everyone for all your support in this new educational project. I had 1000 views of my main case summary video in one week and I know many doctor contacts saw and shared it. If any doctors do want to know more they should feel free to get in contact with me and I can share more about the hospitals, teams, GPs and consultants I am under – IF they want to find out more because this would help their patients to get treated more quickly.

I now have two written radiologically confirmed diagnosis of arachnoiditis from two senior NHS neurologists at two Midlands NHS hospitals. I continue my medical journey under both their care.

Email me at: beckyhillblog@outlook.com

If my journey changes the outcome for just ONE patient then it is worth it all. So if you are that patient today – I do this for you and pray that the information I share may make your journey a little easier than mine.

“Let me be filled with kindness, and compassion for the one
For humanity. Increase my love”

– ‘For the One’ Bethel Music

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.

Enduring the Pain of a Chronic Spinal CSF Leak

“Try to understand others. If you understand each other you will be kind to each other.”

John Steinbeck

Trying to understand others is a big motivating force in my life. I have learnt from experience over the years that the more we can TRY to understand others – and they TRY to understand us – the kinder we will be to one another. Ignorance about others’ lives and what they have had to deal with in the past, or what they currently face now, is often one of the reasons we misunderstand and judge others behaviour and words. Listening and more understanding, on the other hand, is often the key to treating people with more love, grace & compassion in every way.

This is one of the reasons I have tried to tell my own story over the past five years as honestly as I can. To help me to understand and process my own journey. To also help others to understand me. But probably most importantly to try and help others suffering to not feel so alone and misunderstood.

I want to use my writing abilities to be a public voice and advocate for the suffering and oppressed – to help them express and understand the inexpressible within themselves and to help those around them to also understand. Whilst also providing a window to those in the medical profession to help them understand spinal CSF leak patients better.

“Speak up for those who cannot speak for themselves; ensure justice for those being crushed.”‭‭

Proverbs‬ ‭31:8‬ ‭

Many doctors have no idea how much damage they can physically and mentally do to their spinal CSF leak patients due to their own misunderstandings and ignorance of the condition. As I wrote about in Dear Doctor, A Letter from your Naked Patient.

My Background Story

In January 2015 I fell off a small step ladder whilst painting and hit my head and spine hard. Although a little dazed and bruised at the time, I generally felt OK. But over the next 48 hours I started to feel more and more unwell until I was left predominately stuck in bed in a dark room (to read more about that see my original Living with a Spinal CSF Leak post or Surviving the Storm post). At first I was diagnosed with a concussion, then post-concussion syndrome. But finally after admission to hospital 8 weeks later with things not improving and in some ways worse (on my third trip to the ED) – I was diagnosed with a spinal CSF leak.

Although my cranial and spinal MRIs were deemed normal at the time, I was diagnosed after 2 weeks of observation on a NHS city hospital neurology ward where it was obvious I only ever felt well lying completely flat. I also had a diagnostic lumbar puncture which was low (7). (Although I would never recommend using LPs to diagnose because of the high risk of a new leak and the fact that about 60% of leak patients will not show low pressure anyway*). I also then had 5 much better months directly following a blind lumbar 30ml epidural blood patch before fully relapsing again that September.

I have now had 4 blind epidural blood patches – all gave me obvious consistent relief for weeks to months. Although never fully and always transient. I have also had countless MRIs, a cisternogram and a CT Myelogram. Although it is only recently that my UK CSF leak team have flagged seeing a suspected leak on my spinal MRIs.

High & Low Pressure Fluctuations

Over the past 5 years I have experienced months of being almost constantly flat in bed and months of being upright all day (following epidural blood patches). But never symptom free and always struggling with hypersensitive reactions to normal pressure changes in my skull. At times after blood patches my symptoms have also typically seemed to shift into a more high pressure pattern of getting worse lying down and better upright. Although those times were also very confusing – as they often are for many spinal CSF leak patients who experience hypersensitive pressure fluctuations. Which can be even more heightened after treatment/ healing.

I have discussed this with a number of people over the years. There is an online support group for patients experiencing symptoms consistent with Rebound High Pressure symptoms and treated for such symptoms.

My friend Lisa’s experience of pressure fluctuations and rebounding from low to high pressure following spinal CSF leak self healing is documented here. (Also found at Series 2 Episode 6 here: www.nationalmigrainecentre.org.uk/migraine-and-headaches/heads-up-podcast/)

Micro-Managing ICP Equilibrium

We were actually recently discussing over Twitter how spinal CSF leak patients both before and after treatment/ healing become experts in ‘micro-managing their ICP (skull pressure) equilibrium’. Bending, carrying, lifting, stretching, straining, going to the loo, shouting, singing, twisting, exertion, opening stiff jars, lifting a full kettle, travelling on bumpy roads, stress & anxiety etc etc all tend to send pressure bursts/ waves into our head. Which when we are leaking, just seem to also make us leak more until it builds and we can no longer maintain a manageable pressure equilibrium in our skulls.

So to manage the condition, I have to ‘micro-manage’ my ICP. For me this means avoiding many of the things I mention above as much as possible or plan them before I lie down to rest. I also ask my family to lift/ carry/ bend for me as much as possible. I use a ‘litter picker’ stick to pick things up off the ground. I often try to delay using the loo until before I know I can lie down where possible. I also stand up most of the time I am upright because sitting makes me worse far quicker for some reason. (Perhaps due to the location of the leak and the stretching of the dura from sitting down.) Keeping my spine completely straight is my key to more upright time. And reducing the ‘pressure busts/ waves’ in my skull which build up to make me progressively worse until I cannot tolerate the symptoms any more.

How it Feels To Have a Spinal CSF leak.

Please note these symptoms are there every day without fail. This pattern is consistent each and every day.

The best way to explain it, is like an ever-increasing overwhelming dull pressure/ intensity in the head. As it gets worse (over minutes to hours depending on how acute the leak is), you feel more and more detached from the world around you. That feels a bit like being drunk/ or using ‘gas and air’ – but accompanied by a heavy, pressure pain. The pressure is in the whole head but I feel it particularly in the occipital area, in my neck and behind my eyes. At its worst it is accompanied by a ‘pulling sensation’ which leaves you feeling like your head is being pulled into your neck. Or that your neck isn’t strong enough to hold your head up. Also many of the nerves around that area hurt more and more.

It just builds and builds until your brain starts shutting down. You can no longer think straight, process well, everything feels impossible, you become disoriented and confused and you can feel very very nauseous and I sometimes even want to gag. Although never actually vomit like some people do.

I also get pain in the bottom of my spine which gets increasingly worse. So I have described to others that it often feels like I have a metal rod going through my spine with a clamp at the bottom of my skull/ top of my neck. And one at the bottom of my spine. The sensation is then like someone is tightening the clamps either end so that my spine is being tightened, shortened and my skull is being pulled into my neck.

I imagine that it’s simply the sensation of your brain ‘sinking/ slumping’ into your skull because of the intracranial hypotension. Caused by the lack of spinal fluid to keep your brain in its cushioned, buoyant place. I think then this causes me to feel tension throughout my spine hence the clamp feeling.

The overriding feeling is…

‘I CANNOT COPE.’

I cannot cope…. with this intensity in my head.

I cannot cope …. with this level of pain & trauma.

I cannot cope …. with thinking and making decisions.

I cannot cope… with attempting to formulate words to explain what is happening.

I cannot cope …. with attempting to function whilst my body and brain feels like it is shutting down.

I cannot cope …. with this impossible illness.

My husband says I become vacant, distant and increasingly slow to respond as it becomes obvious that I am in a bad way.

Those feelings just increase until you feel like…

I CANNOT COPE WITH ANYTHING!!!
I MUST LIE DOWN & REST!!!!

You then think about the best quiet place that you can lie down flat in that moment….

Like a drug addict needing their fix….

…. Or a person in perpetual excruciating pain needing a morphine injection.

It’s obsessive.

My ‘morphine’ or ‘drug of choice’ is to lie down.

Morphine itself doesn’t work nor do any other pain killers. ONLY lying down/ resting works. Hence the debilitation.

The Impact of Lying down To Rest

As I lie down flat I feel a wave of relief as, almost instantly, things get easier. It can take anything from seconds to minutes to begin to feel the easing of symptoms. Although if things have got too bad because I have pushed myself too long, gone out for a longer walk or if I have just been on a longer car journey, it can take up to an hour-plus for my symptoms to fully calm to more manageable levels – where I feel more fully relaxed again from the extreme tension and trauma in my brain and body.

But as it does ease, it’s like your head slowly begins to clear. The intensity gradually eases. The ‘clamps’ loosen. The pain begins to dissipate. The brain fog and confusion gets better.

I can finally think and talk more clearly again.

I feel more normal again … although never fully normal. Never how my head used to feel before the accident.

At my worst times – when I was probably leaking most acutely – after being upright too long (sometimes a matter of minutes) I would not even be able to walk or talk properly. My speech would become slurred and incomprehensible. My legs would turn to jelly and I would struggle to walk without holding onto things to pull myself back to bed. And everything would feel like a dream.

My brain would just begin to completely shut down.

Until I would HAVE to lie down, as if being saved from drowning in pain, trauma & confusion… and after 5-10 minutes of lying flat I could think and talk more normally again.

Countless doctors and nurses in hospital over my various stays observed this which helped confirm the diagnosis at that time.

Those were more my classic spinal CSF leak symptoms. My problems with doctors came when those times were extended to hours or even most of the day of being upright. Especially after epidural blood patches. That is when many spinal CSF leak patients fall through the ‘text book diagnosis’ cracks. Into the ‘chronic migraines’ or ‘NDPH’ (New daily persistent headache) or chronic fatigue boxes.

And yet I know hundreds of patients in the UK/ world wide who can be upright most, or even all of the day, with spinal CSF leaks still evidenced on their scans or found in exploratory surgery – proving that it is possible, and actually more common than once thought (as any up-to-date research on the subject will tell you). Some patients with all the symptoms but no scan evidence turn out in exploratory surgery to have a thin membrane covering the leak which stops them fully healing but provides enough covering to not show on scans and give them more upright time. Some of these patients started off leaking through a simple lumbar puncture, but were previously told by doctors that they definitely could not be leaking still, and suggestions made that they ‘spend too much time on Google’ or it is simply ‘all in their head.’ Which regularly pushes very unwell patients into deep despair.

This is part of what makes this condition very difficult to endure.

The fact is that lying down not only helps much of the intense, traumatic pain. But it also helps my focus and ability to concentrate so much. This means that I often opt to lie down to write messages or emails to people, or talk on the phone for extended periods – simply because I can ‘think straight’ lying down – much better than I can upright. Especially if I have been upright for a while.

I normally write most of these blog posts lying down too.

Current Symptoms

I currently find I have about 1-4 hours upright AT A TIME. Generally more first thing in the morning and if I am well rested. Before things get too unmanageable and I have to lie down again for 1-2 hours to recover. I am then up for a while then down again throughout the day. I have also learnt to generally try and pre-empt when I really need to ‘get flat again’ so it doesn’t get too bad. Otherwise I can’t cope and it takes me longer to recover. Some days – like today – I am more up and down like a yo-yo for shorter time’s to try and avoid longer periods flat and do more writing or things on my phone lying down.

This has actually all been much easier for me in COVID-19 ‘lockdown’ because being at home all day means I can plan my lying down breaks much more easily. It’s extended periods upright outside of the house which are hardest for me.

However, as much as lying down is my ‘painkiller’ of choice. I must tell you that it doesn’t always ‘make all the pain go away’.

We Do Get Pain Lying Down Too

I live with a constant underlying dull head pressure and pain to varying degrees. Since my accident I have never had a fully clear head without any pressure, fogginess or pain at all.

Not one day, not even for one hour.

I imagine that everything is so messed up, inflamed and damaged in my head and spine these days and with my ICP equilibrium. That the pain and feelings of pressure (to differing levels) never really fully leaves. And often if I ‘over do it’ either upright or trying to do too much lying down. (A lot of typing, reading or talking). I can get a different type of headache on top of my normal one. A very painful more frontal headache, combined with a feeling of pressure and nausea. That can really stop me in my tracks for a bit. I actually feel it a bit now as I write this on my iphone whilst lying flat. I imagine it’s partly the exertion of holding my phone, and typing a lot on it. Whilst also concentrating to write. Sometimes normal painkillers can help this additional headache a bit but not always.

That kind of headache makes me feel very sleepy and I yawn a lot to try and release the pressure. If I then get up I often feel my ears popping as if my pressure is trying to equalise again. I still obviously have a lot of problems regulating my skull pressure.

I must also add here that I can also get those ‘pressure bursts’ I mention about being upright – lying down too. If I stretch, move or turn over too quickly, speak too loudly or even ‘pass wind’ (funnily enough – that’s how sensitive my head is!!!) I get a tangible wave of dull pressure and pain into my head. That can also make me feel rather light headed for a few minutes. But it normally eases again lying down if I am still and quiet for a bit – but not always.

The Vicious Cycle of Stress and ICP Regulation

Stress is also a MAJOR problem for spinal CSF leak patients. Due to the natural increases in ICP stress and anxiety brings – it is one of our worst enemies. Which is a major problem when our symptoms and the resulting debilitation are SO stressful, and at times traumatic, to deal with. I fully believe that the 2-3 major mental health crisis’ I have experienced were in seasons of major stress caused by the trauma and exhaustion of dealing with the illness and trying to get medical help long term. As well as experiencing relapses and pressure swings post treatment.

That is when I go from manageable head pain (if I have consistent lying flat breaks). To unmanageable, perpetual, excruciating, persistent head pain.

Upright AND lying down.

It is the EXTRA PAIN (on top of the normal more positional spinal CSF leak symptoms) that pushes me ‘over the edge’. And that level of pain feels impossible to deal with. That is what happened when I fully relapsed last year and later wrote this article as a window into the torturous suicidal mind.

At that point I had relapsed again and was desperately unwell physically AND mentally. I saw my neurologist in May 2019 and we were rather confused as to whether my symptoms could be high or low pressure related. Due to some features that looked more like high pressure linked to terrible symptoms on a recent flight to Italy on holiday and previously head pressure and pain lying down and in the night/ early morning. Although after an ‘acetazolomide trial’ (a drug used to reduce ICP) made my symptoms doubly worse until I could hardly move, walk or talk upright at all. It became clearer that it was probably another low pressure relapse. And after a few weeks following the full relapse my symptoms fell into a clearer low pressure pattern anyway of symptoms being greatly reduced lying down. (Especially once my sleep was restored & extra Neuro pain helped by medication from the GP – Mirtazapine, Zopiclone & Nortriptiline which was approved my my neurologist.)

These confusions about pressure are very very common as there are so many symptom overlaps between high and low pressure and their differences are often not clear cut. ** They can also have paradoxical symptoms which can confuse many. I know people with low pressure sounding symptoms that turned out to have IIH. It is also possible to have high ICP/ OP readings from intracranial monitoring or LP AND a spinal CSF leak. (I know of many people who have had normal or high pressure readings (one with an OP of 45 and I have heard with someone with over 50) WITH an evidenced spinal CSF leak. So it’s never a simple process to know what is going on.)

Also Rebound Intracranial Hypertension symptoms following treatment – although increasingly documented are often sneered at or laughed at by most neurologists. I was onced asked by a neurology consultant secretary after none of the neurologists in the office had heard of it… “did you see it on google Mrs Hill?” in a sarcastic tone. It’s this kind of experience that just leaves you feeling stupid about the complexity and debilitation of your symptoms. I replied, “Yes you can find it on google – can I send all the links so someone can actually consider it.”

Holistic Calmness to Manage Symptoms

So, regarding all this, and as I have previously written about – holistic calmness is often the key to managing a chronic spinal CSF leak. But calmness is not easy to come by when you deal with the stress of everything I have described above. Calmness for me has to go so much deeper than for the average person to try to maintain enough balance to keep my symptoms under control.

I tried to explain this once to a friend of mine who is also a doctor. My ‘normal ups and downs’ are so exaggerated by this condition that I imagine what to ‘normal people’s’ body and mind might feel like small changes in equilibrium – to me is felt so much more acutely. Hence some doctors will perhaps purely attach such issues to a patients lack of mental and emotional stability, rather than recognising the underlying physical medical problem creating these ‘mental and emotional’ swings and issues.

Mental Health & CSF Leaks

As I have explained again and again to both patients and doctors – You cannot separate the physical and psychological in any medical condition… But especially in this condition. I like to call the combination of the physical and mental in spinal CSF leak patients and during recovery as ‘a big ball of mess!!’ Where it is impossible to know where the physical ends and psychological begins.

You just cannot separate them.

Especially due to the way this condition effects our ICP (head/ skull pressure) and how that then both responds to stress & triggers stress.

When I say: ‘I CAN’T COPE!’ It’s not normally because I cannot cope in my mental health – per se. It’s mainly that I cannot function physically in that moment so then cannot cope any more mentally with the physical trauma of those symptoms either.

Once I lie down for a bit “I CAN COPE” much more.

But anyone will tell you when you are in a lot of pain or feel really really ill physically – you also struggle to cope mentally too. So the more I try and push my body to do what it struggles to do physically, the more pressure that puts on me mentally and emotionally. Causing this vicious circle where the physical and mental simply feed off one another and you can end up in dangerous places psychologically too. This is why many spinal CSF leak patients can have both underlying depression & anxiety AND be prone to major mental heath crisis’ when their body and mind pack in after trying to ‘push through’ for too long. I believe we are massively more at risk of complete physical and mental breakdowns than the normal population.

I never had any mental health issues at all before my accident. All my problems have always been directly linked to my medical condition – as confirmed by both psychiatrists and the counsellor I have seen since.

Why I Share My Story Publicly

So there is more of my current story of battling a spinal fluid leak (and at times more recovery) for 5 1/2 years. This condition is still so often so unrecognised, under-diagnosed and so misunderstood that it causes many patients untold amounts of extra pain and distress.

This is seen again and again and again when you hear the hundreds of stories in the private Facebook UK and International Spinal CSF leaks and recovery support groups. Most patients have a MAJOR battle to be heard and it causes them untold trauma physically & mentally that can effect them well into the future. Even if they can and do more fully recover in the end.

That is one of the reasons I continue to share my story. To be a voice for others struggling – as much as for myself. To try to reach some who are suffering so deeply and feeling so alone and misunderstood. And to help their family, friends and maybe even their doctors understand this condition better.

Case Update

In my own case – I am still working with my UK NHS specialist neurologist and his intracranial pressure team to try and find a way forward to help me. At the moment this includes considering Digital Subtraction or Dynamic CT Myelograms to try and locate the actual leak site (which is often very complex and hindered by the fact that my last CTM caused me to seizure) or trying a fifth blind epidural blood patch as these have helped a lot in the past.

Although the current pandemic had delayed all that somewhat. And our NHS – although wonderfully free at point of access – is also often very very slow. Particularly for patients needing multiple scans and procedures to help them with long term conditions such and this.

So mostly I have had to learn how to live with this awful condition and find the best life I can within all of the pain and restrictions. And this is where I am immensely thankful that with the help of my amazing husband, family, church family, many friends and the spiritual support from my faith. As well as some wonderfully supportive doctors I have discovered on my journey. I have found a way to live and enjoy life – amidst all of its pain. With God’s help I have found purpose, meaning and hope even amidst so much personal destruction.

So I want to encourage all those reading this today. That even if your life will never return to what it once was. There is still more beauty, joy and meaning to be discovered here and now. It will take a lot of grieving, support and wrestling through the journey. But to find more meaning within it perhaps you could reach out to support someone else, help educate others about CSF leaks, volunteer for one of the CSF Leak charities or find new creative ways to use your skills & expertise to make a difference in our world.

Your Life May Never Look Like How You Once Imagined It

But maybe rather than giving up hope we need to re-imagine a life that IS worth living. Through grieving the losses deeply – accepting our new reality – but then by finding a new way of living. Here and now. As many others have had to do before us.

My story is a testimony that it is possible to rediscover a new way of living even when you are not yet well. A spinal CSF leak is not the end of everything.

It may be the death of the life you were living, or imagined you would be living.

But sometimes it is also the beginning of some new things discovered that can be even more beautiful than what you knew before.

“Most of the important things in the world have been accomplished by people who have kept on trying when there seemed to be no hope at all.”

Dale Carnegie


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

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.

This post is a continuation of my Living With a Spinal CSF Leak post that I wrote 3 years ago. To read more about my spinal csf leak journey then please see the Spinal CSF leak tab in the top menu.

*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 over 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 diagnostic 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. 

Finding Peace in the COVID-19 Storm

It feels stormy out there right?

Everything is so strange. In one moment our whole world has changed. A surreal season which we are struggling to understand. To catch up with or comprehend.

And as time goes on…

We all know people deeply affected by this world-wide tragedy. Those who got sick and recovered. Those who never did recover and so sadly lost their lives. NHS & care staff working on the frontlines dealing with new levels of stress, pressure and anxiety that those of us stuck at home can hardly fathom. Our day to day lives so completely transformed.

Will we ever return to the normality which was once known?

Can we truly find peace in this uncontrollable storm?

Our chaotic unpredictable universe is reminding us of how out of control our lives often seem. We have again recently all had to face our own mortality and brutally realise how fragile we truly are.

Is anything certain any more? What does the future hold for any of us?

It feels stormy out there for so many. But it also often feels stormy in here too – right? Within us, in our chaotic minds. In our homes, families, relationships and lives.

Chaos is not at its worst outside of us. It’s actually most dangerous when it takes over within us.

How can we find stillness in chaos? Is it even possible without escaping from, or numbing away, our anxious thoughts? Or in trying to escape or distract ourselves from the reality of the current major struggle in our world?

These are important questions. Ones that I have had to dig so much deeper into and wrestle with a lot over the past five years since I fell off a ladder in January 2015 and sustained a debilitating brain/ spinal injury that I still have today.

In that one moment my life suddenly rocketed out of my control. One day I shifted onto a new life path I was never meant to take. A place I had not planned for or envisioned to live or endure.

These current restrictions due to the Coronavirus lockdown are actually not so strange for me, because the past five years have kept me predominately at home anyway. And for many hours a day lying down to control debilitating brain and spinal pain and other symptoms which means I still spend an awful lot of time in bed or on the sofa.

So many times my life felt devastated, as the restrictions and debilitation overwhelmed me. I watched so many around me continue on with their ‘normal’ lives whilst mine remained somewhat ‘on hold’ and out of control.

…. until ‘one day’ I would hopefully get fully well.

Then things could return to ‘normal’ I could again shift back onto the path I should be on.

But I never did get well…
I never got to take back control…
My old ‘normality’ never came…

So I have had to learn how to live here. To find a haven of peace even when the storm rages. To let go of my need to try and take control of my, or others, destinies. To climb out of the box of ‘normal living’ to embrace new spaces found in the ‘abnormal’ reality here.

It’s not an easy journey.

I know that so well.

It’s painful! It’s full of grief.

But it’s full of wonder and profound new discoveries too.

The letting go of control.
Of embracing a new way of living.
Allowing old dreams to fade.
So that new ones can arise.

I have had to adapt, I have had to change so much so as to find a new way of life that can be lived in this place. To discover new hopes and dreams within all of the restrictions. Rather than constantly grieving the life I hoped to be living right now.

I have had to dig deeper. To find peace and stillness – even when life doesn’t look like how I imagined it before.

Through all of my wrestlings I have discovered a deeper peace that I know is always there to be found. If I will continue to ‘let go of the old’ and ‘embrace the new’. Settling in my heart that change must come and that life can still be lived in the midst of all the restrictions and pain.

I must look for the firm foundation amidst all of this shifting sand.

Where is this unchanging peace found?

In my experience there is only ONE true and reliable avenue to discovering lasting peace. A peace that is described and experienced as ‘passing all understanding’. It’s unfathomable because it is not based on your circumstances going well. It’s not reliant on a peaceful place being found. It’s not even discovered only when everything is quiet & still.

Because for me… true peace is not the ABSENCE of something. It’s not a place where there is no longer struggle, pain or discomfort. Instead my experience of peace is the PRESENCE of something far more beautiful.

To be exact – my peace is the PRESENCE of SOMEONE!

A person who is always there and will never leave me, because He forever lives with me. He constantly dwells within me. He is all around me and will never forsake me.

My peace is a person… yet He is also a supernatural force.

My peace is so gentle … and yet He is also known to roar.

My peace is abundantly loving… and yet He challenges me each day.

My peace upholds me… even when I can no longer feel Him there.

My peace is Jesus Christ.

The tangible stillness that guides my life’s ship through the storm.

A place where He is fully in control even when everything within me feels like a storm.

An indescribable presence, so still, so restful, so easy. Where the heavy burdens I have been carrying are lifted. And His gentle yoke of unconditional love and undeserved grace is left in its place.

He is the ONE who has won my heart with the beauty of His unending Love.

He is my ultimate calm.

So many people misunderstand my Saviour. But it doesn’t mean that He is not there. He is always standing patiently, glimmering in the shadows of our lives. Knocking at the door of our hearts. Willing us to let Him in. Desiring us to allow His Light to radiate into our dark places and shine through our broken pieces into our hurting world.

So that we can experience the supernatural power of His peaceful presence. An unimaginable Love that takes you over as He enters in. Awakening you by the grace that He plants within.

In His peaceful presence there is a realignment of His Spirit and your soul. You find that you become restored back to who you were always meant to be. You discover the purpose for which you were created. You finally discover what it really means to truly be ‘me’.

In His presence the striving will cease as His supernatural rest takes over as He does His own work in you. His peace descends as you cease resisting who He made you and who you were designed to be.

I wonder – do you know that peace yet? Have you experienced its stillness?

Do you feel it now?

I feel that peace. The deep calm of knowing Him and Him fully knowing me. It emanates through and from His Spirit who came to live within me the moment I fully surrendered. The time that I was born again into His family. The occasion that I was made fully new.

He is my peace.
My love, my life, my all.

Do you desire to feel deep peace today? Has anxiety taken you over and you long for even just a taste of peace again? For normality to be restored? To discover the joys of how life used to be. To go away somewhere, to retreat back to your favourite places of beauty & joy. To return to a life that was more ordered and controlled, when your plans were not put on indefinite hold.

Well He is here for you – if you will call out His name.

His name is Jesus.

Call to Him today.

He is always waiting, always willing and always longing for your call.

Jesus said, “”I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world.””

– John‬ ‭16:33‬ The Bible ‭‬

We will have trouble in this life. Our broken world is full of it. If we can avoid it today – it will somehow reach us tomorrow. But Jesus transcends the trouble in our world. And with your permission that presence of peace can enter into your own personal chaos.

You simply have to…
Let go.
Surrender,
And dare to let Him in.

You cannot earn peace. You cannot muster up enough positivity to win it as your reward. You can only surrender to Him and allow Him to do His deep work within you. Until peace begins to take control of all that you say and do.

I assure you – once you start to taste and experience the glorious fruit of His peaceful presence, you will be ruined for anything else.

Because peace is not a place. It is not an absence. It is not even an escape.

Peace is a person.

Peace is a presence.

His name is Jesus.

And you can experience Him now.

IF you will surrender and let Him in!

“Deep peace of the running wave to you.
Deep peace of the flowing air to you.
Deep peace of the quiet earth to you.
Deep peace of the shining stars to you.
Deep peace of the gentle night to you.
Moon and stars pour their healing light on you.
Deep peace of Christ,
of Christ the Light of the world to you.
Deep peace of Christ to you.”

– A Gaelic Blessing

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

Five Years ago this week…

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

Five whole years…

Of enduring
Of fighting
Of grieving
Of accepting

But also five whole years…

Of learning
Of growing
Of loving
Of living

One fall. One injury.

Changed so much.

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

The fall.

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

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

They have seen it all!

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


Never to return to who she once was.

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

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

We always believed I would get well!

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

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

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

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

Until that haunting plateau returned.

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

It didn’t fall.

I did.


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

Completely spent
Totally wrecked
Utterly broken

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

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

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

I had nothing left to fight with.

It was tough to come back from that figurative fall.

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

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

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

New mindsets.
Hidden joys.
Intense loves.


IF we choose to never give up…

Only then…

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

If we will simply stay the course.

Who knows what tomorrow might bring?

Five years ago this week…

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

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

Until change comes.

But I also know…

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


There has been something deeply beautiful about this impossible journey.

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

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

But never getting fully well.

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

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


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

Simply because,

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

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

(Looking For a Saviour – United Pursuits)

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

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

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

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

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

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

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.