Category Archives: Spinal CSF Leak

Learning To BE

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

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

Today
Now
In this moment.

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

Instead it’s about being:

ME, simply me, NOW.

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

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

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

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

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

Learning to Be copy

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

LETTING GO

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

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

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

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

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

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

BEING GRATEFUL AND THANKFUL

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

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

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

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

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

LEARNING TO SEE WHAT IS AROUND US

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

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

REDISCOVERING PURPOSE

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

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

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

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

WHO AM I WHEN I CAN’T DO ANYTHING?

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

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

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

FINDING PEACE AND REST AMIDST THE STORM

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

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

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

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

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

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

Learning to Be be still and know copy

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

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

Every
Beautiful
Moment
That STILL exists HERE.


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

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

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

To read more about my story of living with a chronic spinal CSF Leak click here.

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

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

Breaking Through the Darkness

Hope deferred makes the heart sick, but a dream fulfilled is a tree of life. – A Proverb‬*

Have you ever reached the end of yourself?
REALLY reached the end of yourself?
When you are depleted at every level:
Physically,
Mentally,
Spiritually,
And psychologically?

When despair sets in and a darkness envelops you that feels so strong it literally attempts to strangle any life and hope out of you?

My world came crashing down in the week running up to and over Christmas this year and I fell apart in a way I never would have thought I could or would.

You see – I am strong!
I don’t give in easily!
I have a very real and deep faith in God!
I have a healthy thought life!
I don’t do being ‘weak’ so well!

I had held on all year.

Through an immensely difficult year for our family, following a serious and unusual spinal injury (a CSF Leak) that left me with major neurological problems.

I had finally received more treatment (a second epidural blood patch) for debilitating Low Pressure Headaches caused by a suspected CSF leak, and I had to muster up all the strength I had left to be positive, overcome fear and give recovery its best go. As I wrote about in When All that Remains is Faith, Hope & Love.

I had to be strong enough. Somehow I would be strong enough. I wasn’t going to give anything else away to this horrible condition.

I wouldn’t let it take more of my life.

The problem is that sometimes life takes us to places that are quite simply beyond us. Things don’t work out how we thought they would.

We give it everything we’ve got.

And then we find we have nothing left to give.

We humbly discover that we too are one of ‘those’ people we perhaps used to look down upon.

‘Those people’ who can’t cope. ‘Those weak people‘ that can’t keep going when life gets tough.

We discover….

THAT IS ALSO ME.

And it blasts everything we once thought about ourselves out the window.

‘We’ become ‘them’.
The one battling a chronic illness.
The one who ‘broke down’ mentally.
The one who felt like escaping life was perhaps better than living it like this.

And a new journey starts.

After weeks of waiting and battling for treatment – a second epidural blood patch – everything was poised in my mind.

THIS HAD TO WORK!
I HAD TO BE WELL AGAIN!

Being a positive, faith-filled person I filled my mind with that hope. Surely after all the discussions, waiting, battles and disappointments – it would work – IT HAD TO!! Our family couldn’t go through the trauma and chaos of any more upheaval because of this horrible and unusual injury.

I finally had my blood patch and all appeared to go well – although it certainly wasn’t an instant ‘fix it all.’ So I did what I always try to do – focus on the positive, believe, step out in faith and trust that as I regained my physical strength and conditioning that I would find complete health.

I did all that I could to push through various lingering, unpleasant symptoms. Stay positive and keep going. The problem was my body and mind was exhausted and as I pushed it more and more, it began to shut down. I survived for a time on shear willpower and adrenaline but 3 weeks after my blood patch I developed acute insomnia.

I would go to bed exhausted, sleep for 30 – 60 mins, then be awake all night …..every night…. for two weeks.

No ones body can survive like that whilst also battling a major neurological condition.

But I tried to keep on going, I thought ‘if I just keep going then I will get tired enough to sleep’. Then my conditioning will get back to normal.

I just wanted to be well for Christmas to leave this difficult year behind in 2015.

Things spiraled out of control physically and mentally – my symptoms seemed all over the place – before crashing in every way.

It was Christmas.

Usually a fun-filled family time of sharing gifts and eating together.

Christmas 2015 is a blur to me. I cried my way through it, in all honesty, exhausted, depleted in every way and not even wanting to live anymore – if living meant this.

I felt so very unwell and the relief that lying flat used to provide was not alway’s there. Which is why I couldn’t sleep. It was torture. My body and mind were utterly exhausted. I didn’t know what was going on.

I assumed that the blood patch had eventually failed and because of all the battles to get it I was not sure I could access another one.

I could no longer think straight.
I could no longer see a way forward.
I lost my perspective.

I naively and ridiculously found myself ‘wishing’ that what I had was terminal – because at least there would be an end in sight, if it was. At least there would be an escape from the inner and outer pain that I felt.

PAIN CONSUMED ME.

I felt stuck between an inner pain, grief, physical pain and such exhaustion that death seemed the only way out. Yet I knew to choose death would devastate those I would leave behind. Which added to my pain.

Breaking through the darkness copy

Darkness enveloped me and pain became my reality.
Hope felt out of reach.
Faith attempted to hold on with its finger nails but was losing it’s battle.

My pride was shattered.
I was not so strong after all.
I couldn’t do it anymore.

Hope deferred makes the heart sick – A Proverb‬*

My heart was sick and I felt lost in a pit of despair that no one could lift me out of. Even my wonderful husband was struggling to reach me.

There comes a time when – however strong we are – we come face to face with the depth of our weakness.

I had never imagined I could be ‘that person’. That I could reach a place where thoughts of depression, despair and even suicide not only became real but became an obsession.

I just wanted it all to stop!!

I couldn’t do this anymore!!
I couldn’t take the chaos!!
I couldn’t take feeling so ill!!
I couldn’t face the battles of trying to convince doctors to help!!
(I actually thought me falling apart mentally would make my chances of getting help for my underlying physical condition even more problematic. I was scared that they would assume it was all ‘in my head.’).

And yet I first had to face the reality of where I was. I had been battling an injury that directly affected my brain – for a year. I had spent almost 6 months of that year in bed, lying flat almost 24/7 and the rest of the year at nothing like full capacity.

There comes a time when – however strong we are – we come face to face with the depth of our weakness.

But, I still felt like I had failed. I blamed myself.
One mistake with a ladder had cost our family so dearly.
One accident had robbed us of our future.
One moment had wrecked EVERYTHING!
I decided that I had then probably ruined my last chance of getting better by ‘blowing’ this blood patch by doing too much.

I had no ‘fight’ left in me so hopelessness washed in like a flood.

EVERYTHING BECAME DARK.

I couldn’t see past the darkness. Attempts to battle negative thoughts whilst being physically so depleted and unwell seemed fruitless.

I JUST WANTED TO ESCAPE.

I convinced myself that my family would be better off without the burden of such a debilitated, chronically-ill wife and mother.

The pain of thoughts of dying came face to face with the pain of thoughts of living.

I DESPAIRED OF LIFE ITSELF

“Courage isn’t having strength to go on – it’s going on when you don’t have strength.” -Napoleon Bonaparte

BUT……. IN THE MIDST OF THE DARKNESS LOVE BROKE THROUGH!

All was not lost.

Love reached out to me and helped me to hold on.
Grace was still there waiting to be rediscovered.
I had to open my eyes again to see that the light of love was still burning in the darkness.

Family and friends simply loved and supported me. They helped me to rediscover a better perspective. My 8 year old daughter used to come and sit on my bed and with all the passion she could muster she would tell me how much she loved me and that she wouldn’t want any other Mummy but me – even when I am so unwell.

A new journey began.
It was not easy.
It has been painful.
It has been hard.
It has been confusing.

I have wrestled with myself.
Wrestled with my identity.
Wrestled with my faith.
Wrestled with the darkness.
Wrestled with various neurological symptoms.
Wrestled with how to move forward.

It has been a very confusing time symptoms-wise. After the new year things began to improve. Some things were still like low pressure headaches. Some felt different. It was hard to know what was going on in my body, brain and mind. Doctors were not always sure either.

I had to discover the strength each day to put one foot in front of the other to just get through intact. To pull through the pieces of a broken life and somehow find hope again.

“Honesty & steadfast faith – especially in the darkness – forms a powerful & enriching message for everyone in pain….. Sincerity and humility are essential.”Samuel Chand

Darkness had enveloped me at a time when I felt like I couldn’t find God any more. Hope returned as I discovered He was there with me all the time.

I just couldn’t ‘perceive’ Him.

I had to rediscover God’s love and grace. Learn to ‘let go’ of the life I had lived and choose to trust and hope that I could recover and that there was something better ahead. I had to battle the fear and anxiety that tried to persuade me that I would never be free. I had to learn to get comfortable with stillness, quietness and to embrace true peace and rest on a deeper level.

I had to learn to perceive God’s voice in a new way and hold onto the truths spoken over me.

Breaking through the darkness quote copy

I have had to rediscover who I am in its simplest form and be OK with a more simple life for a time.

A new depth of humility helped me to see that I had sometimes  judged others ‘weakness’ because I didn’t understand them. I have now developed a deeper empathy and compassion for others facing challenges and struggles; especially those linked to chronic and mental illness.

I have had to discover a new kind of strength that is actually born out of weakness.

It’s been an immensely difficult journey and one that it has taken me a while to write about. For a long time I felt like I had lost my voice and had very little to say that could help others.

And yet.

I know that as we talk about our deepest weaknesses and vulnerabilities, others can connect with us and know that they are not alone. It then gives our own pain more purpose because our story can bring a ray of light in the midst of another’s darkness.

“We may impress people by our strengths; but we connect with them through our vulnerabilities.” – Nicky Gumbel

It can be invaluable to know that someone else is also struggling and that your journey can help them too. We can then navigate the stormy seasons in our lives TOGETHER and some how help one another to weather the storm.

Albeit wounded.
Yet stronger.
With a new perspective.
More appreciation of life.
And a deeper empathy for others.

“And once the storm is over, you won’t remember how you made it through, how you managed to survive. You won’t even be sure, whether the storm is really over. But one thing is certain. When you come out of the storm, you won’t be the same person who walked in.” – Haruki Murakami



Please do feel free to comment below. To read more about my initial injury and journey with a CSF leak/ Low pressure headaches you can see these posts.

*Proverbs 13:12 from The Bible


To read more about my story of living with a chronic spinal CSF Leak click here.

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

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

A fantastic informative video that you can refer to about spinal CSF Leaks, their symptoms and treatments is The Mystery Headache: Migraine, Positional Headache, Spinal Fluid Leak? by Professor Ian Carroll at Stamford University Hospital.

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

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

When All That Remains Is Faith, Hope & Love

“Three things will last forever—faith, hope, and love.” – 1 Corinthians‬ ‭13:13‬ (the Bible)

One thing is for sure; I am not going to forget 2015 for a while. I think for our family it will be known as ‘that year’ for a long time to come.

What a journey it has been!

When I started my blog at the start of this year I didn’t expect to be writing about all the very real and immensely difficult challenges we would imminently face this year.

When your life is stripped back it reveals what is at your core. What comes out of you during tough times shows what you are truly made of.

It’s a truly humbling journey.

Yet, through all the chaos, the pain, the distress and the brokenness this year, three things always remained. Many times they were all I could hold on to. Some days I had to dig deep for them; sometimes despair tried to take their place. But despair and fear always ultimately failed to take me down, because I knew these three things would always be there.

FAITH
HOPE
LOVE

heart shaped  in sand

They are unchanging powerful forces at work within the universe. The only eternal truths that were consistent even when so much was going wrong.

They are the divine characteristics of my creator; my father and friend who was always there with me, helping me, teaching me, guiding me and strengthening me.

A light in the darkness.
Peace in the storm.
Hope in despair.
Strength in weakness.

The still small voice bringing calmness, love and direction when life seemed to be falling apart.

If you have followed my story over the past few months you will know that following a fall off a ladder in January, I was diagnosed with a number of neurological conditions at various different times; conncussion, post concussion, whiplash, low pressure headaches and a CSF leak.

Following my relapse the Neurologists decided that most of my symptoms could be directly related to a CSF leak/ low pressure headaches and I perhaps never even had a concussion. However, this is all very difficult to prove, especially because none of my MRI and CT scans showed evidence of any diagnosis.

I finally did have another high volume epidural blood patch after much waiting and debating from doctors.

This procedure has helped me immensely.

I am very thankful for the neurologists at our local hospital who fought on my behalf, for weeks, so that I could access that treatment. All the delays were immensely difficult as well as frustrating and made my symptoms worse, but I always had to acknowledge that my case was unusual and doctors are still learning about CSF leaks and low pressure headaches. Hopefully my case will at least help things to change locally as the doctors learn more about the condition.

Finally a wonderful consultant anesthetist at the hospital agreed to try a second blood patch for me. I am so very thankful for that doctor who took great care over the procedure, was willing to learn about my condition and valued me as a person as well as a patient.

I had 28ml of my own blood injected into the epidural space in my lumbar spine, which is shown to often improve spinal fluid pressure levels and help heal any leak. As it was slowly injected into my spine, towards the end of the procedure, I felt the pain in my head and neck lift which was a great encouragement to me.

The procedure showed initial success and I saw the benefits straight away, but I still faced a massive physical, mental and spiritual battle over the following hours, days and these past two weeks to press forward into recovery.

When you have been ill for a while, especially following a relapse of symptoms, it’s hard to dust yourself down and get back up. There is a major mental battle to face when being upright is connected to so many horrible symptoms.

The blood patch went well but my body was completely out of condition because of the weeks in bed. Even finding the strength to get out of bed and spend time upright was a challenge, even though the direct low pressure symptoms were much improved.

You have to face a lot of fears. Fears of the blood patch failing, fears of relapse. Fears that come into your thoughts because of the continuing aches and pains that followed as my body began to heal and recover from the weeks/ months of trauma and weakness that had gone on in my body. Every ache and pain doesn’t suddenly vanish; some only improve as you get up and get back in shape.

Fear is not easy to face.
It’s not easy to overcome.
It eats away at your peace.
It causes additional symptoms in your body.
It makes recovery harder.

I realised that I had to overcome the fear and anxiety that can develop in relation to getting up and being upright again. Fear and anxiety can in itself bring new symptoms which mimic some of the actual low CSF pressure symptoms. The difference is these are improving as I face them and push through, whereas I was unable to do that with the actual low pressure symptoms.

The way I did this was to fill my thoughts with only things that can truly beat fear and anxiety. These are FAITH, HOPE and LOVE.

FAITH and FEAR are opposites.
Faith believes that good will prevail. Fear focuses on the negative possibilities.

“Fear is placing faith in the ‘what if’s.” – Craig Groeschel

Fear kept knocking on the door of my mind with all it’s ‘what if’s, worse case scenarios and statistics.

Our fearful thoughts alone are enough to keep us bound and stuck where we are. However, over the years I am learning how to fight fear. I am learning how to overcome it.

I knew that my God would help me. So I threw myself onto the one thing that never lets me down – FAITH.

I knew I couldn’t do it alone. I was worn out, scared that my debilitating illness would creep back, that it wasn’t or isn’t all dealt with.

But in the midst of it I knew that I could not listen to all the fears because they would tell me that I was safer staying in bed, that I shouldn’t risk getting up and pushing through. I did still have to rest a lot, but I also had to help my body fully recover by getting up and out.

Staying in bed

I had to listen and rely on three things that are always constant and provided the wisdom I needed and still need to move forward.

Faith
Hope
Love

heart shaped  in sand

I knew if I could take hold of these truths I had NOTHING to fear. They empowered me to face my fears, one by one, and begin to overcome them.

I immersed myself in truth. I spent all the time I could listening to truths from the bible and stories of faith that encouraged, inspired, strengthened and brought freedom to my body, mind and spirit.

I turned off distractions and focused on everything that built faith, spiritual strength and hope.

I knew that I could only fight fear with faith.

Faith is a powerful force.
It has attitude.
It is unwilling to back down.

It has energy to face the darkness of fear, worry and anxiety. It speaks words of love, hope and truth. It builds you up and spurs you on to press forward.

It’s calming, peaceful yet firm voice pushes you forward and says, “you can do this, you can overcome this, keep going.”

Faith gives you momentum to press through discouragements and keep going.

However;
Faith does not exist on its own.
You must feed it.
You must give it attention.
So it can be strong enough to withstand the test.

Faith is supernatural.

It is profound but it is also very real.

When the unseen becomes more real to us than what we see around us, faith is truly alive. It leads and guides us; it teaches us how to behave and act. It helps us to make decisions and brings certainty when the way forward is not clear.

Faith can bring security and stability, even when things get tough and the way forward is unclear.

Faith can also bring healing and restoration if we will let it. It helps to find a way through and will not accept defeat.

Faith fights!
Faith energises!
Faith empowers!

It is because of faith and good doctors that two weeks after my blood patch I am doing really well. I am building back my strength and most of the residual symptoms are leaving. Life is returning to a new normality. New because I am a new person, but a good new because I have grown and learnt so much.

I am building up my physical, spiritual and mental strength. I have discovered a new sense of freedom in my life. I am breaking through more of my fears and learning to embrace this present moment and not allow the ‘what if’s of the future to steal my daily contentment.

A few days ago I went to pick my daughter up from school. As I walked down the school path the heavens opened and it began to pour with rain. My first reaction was “Oh No!” Then very quickly instead I thought – “who cares… let it rain, let it rain hard! I get to walk, outside, on my own and pick my daughter up from school. No rain is going to steal the immense joy I feel in my heart in this moment.”

I never want to lose the wonder of health; of being able to breath, walk, talk, live life, enjoy blessings and be a blessing to others.

I am learning to be so immensely grateful for the small things. To find joy even when it pours with rain, to dance in the midst of the storm.

I honestly don’t know how I could have faced the past year without FAITH. I am not sure I would have survived without HOPE. I definitely couldn’t have overcome without LOVE.

I have realised more than ever before that these things are what are most important. That without my faith and relationship with God this year would have been unbearable. Without His loving hand guiding me and helping me, I would not be where I am at now.

So I am very thankful. Thankful to know Jesus. Thankful for faith, hope and love – in all its shapes and forms. Thankful for friends, family and all the support I have been given.

And I am thankful for life. To be able to live and to love. To be able to get up, be with my family and begin to do all the things that have been snatched from me for so much of this year.

In 2015 I have:
learnt,
grown,
struggled,
faced,
embraced,
survived
and thrived.

It has been immensely difficult but I have been sustained through everything because of these three things:

FAITH, HOPE & LOVE

And nothing can or will take them from me.

“Three things will last forever—faith, hope, and love—and the greatest of these is love.” – 1 Corinthians‬ ‭13:13‬ ‭(the Bible)


To read more about my ongoing story of living with a chronic spinal CSF Leak click here.

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

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

The Power Hidden In Vulnerability. 

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

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

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

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

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

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

A better term is torture! 

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

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

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

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

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

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

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

I have reached a new level of weakness. 

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

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

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

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

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

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

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

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

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

It’s been a tough year. 

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

“…. And once the storm is over, you won’t remember how you made it through, how you managed to survive. You won’t even be sure, whether the storm is really over. But one thing is certain. When you come out of the storm, you won’t be the same person who walked in.” -Haruki Murakami

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

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

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

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

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

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

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

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

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

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

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

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

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

We couldn’t cope anymore. 

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

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

Talk about vulnerability and weakness. 

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

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

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

BUT

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

When there is no where left to hide.

You are just you. 

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

Yet loved, looked after and cared for. 

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

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

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

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

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

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

To be seen in weakness is to be truly seen.

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

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

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

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

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

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

To read more about my ongoing story of living with a chronic spinal CSF Leak click here.

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

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

Never, Never, Never Give Up! 

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

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

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

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

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

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

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

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

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

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

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

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

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

So it was cancelled. 

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

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

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

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

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

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

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

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

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

But we WONT let it! 

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

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

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

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

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

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

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

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

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

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

It’s not easy, but it is possible. 

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

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

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

We are not alone and we will ENDURE! 

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

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

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

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

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

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

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

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

Learn
Grow
Inspire
Lead
Live
Teach


Regardless! 

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

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

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

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

But I will overcome. 

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

I will not allow it to take me down! 

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

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


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

To read more about my ongoing story of living with a chronic spinal CSF Leak click here.

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

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

 

Nine Months On: My Ongoing Journey Of Overcoming A Spinal CSF Leak. 

“Courage isn’t having strength to go on, it’s going on when you don’t have strength.” – Napoleon Bonaparte

Each of us has a story. Our life stories are unique to us. Lives, circumstances and even illness and injury are not often ‘text book’. 

We are all individuals and our lives and bodies are complex. 

I want to continue to share my own story, in the hope it might help you on your journey and also hopefully educate people about some of the complexities of these conditions.

I have chosen to write the post specifically with CSF leak and post concussion sufferers in mind. Which is why it is longer than my normal posts.

Over the months I have read about other peoples stories.

Some of them tie into my own experiences. 

Some don’t. 

So I wanted to add my own story to those out there. Maybe you will relate to it. Maybe not. But I hope that it helps you regardless.

“Facing pain may require more courage than we’ve ever had in our lives.” – Samuel Chand

We all have days and times in our lives when we don’t want to get up in the morning. When life is busy, stressful and hard work. Times that you crave to be able to stay in bed all day read a book, watch TV or listen to music.

Then you get ill or injured and, for a time, staying in bed all day becomes your reality.

And it is far from easy. 

If you have seen any of my previous blog posts you will know I fell off a ladder 9 months ago and sustained a concussion (mild traumatic brain injury) and was later diagnosed with post-concussion then 8/9 weeks later, a CSF Leak (Cerebral Spinal Fluid Leak). Which we assume is somewhere in my spine.

At the moment I am lying flat in bed writing this. I have spoken about lying flat in many of my blog posts, but what does this actually mean? 

I mean my upper body and particularly my head has to be flat on the bed or sofa. Sometimes I can use a very thin pillow to support my head. Often even that lifts my head too high, so I tend to spend most of the day, and sleep, without a pillow. I can be on my back, side or even front.

But my head must be as flat as possible

When I was in hospital, both times, It would intrigue me that so many very ill people are propped up in bed with pillows and their beds raised up.

That concept is unthinkable for me at the moment. In fact the reality is that would just be a form of torture. It seems alien to me to be unwell and sitting propped up. 


I have a routine now where I drink lying flat (even cups of tea) using straws. I eat all my meals and snacks (apart from dinner) lying flat. (I just eat dinner extra fast so I can lie down again quickly). 

My first time in hospital the pain had got so unbearable that my husband would feed me dinner, so I could lie flat, because that is the only way I could manage the symptoms and the pain.

Nine months later, following a relapse, I have learnt to manage it a lot better. The main way to do this is just to avoid being upright for more time than absolutely necessary. Five or ten minutes is normally manageable. Beyond that is often unbearable.

You have no choice but to lie down because it reaches the point you literally just can’t function upright. 

So I currently try to only get up when absolutely necessary.

When I lie flat I am almost symptom free. I say almost, because I still can feel weak and dizzy and get some aches and pains. 

But lying flat I generally feel more like me: 
I can write,
I can talk,
I can think.
I feel more normal! 

Sitting or standing at the moment is a whole other issue. You would not believe how you can go from feeling mainly symptom free to feeling really very ill in a matter of minutes or even sometimes seconds of being upright.

Since I was diagnosed with a CSF Leak, I have caused the doctors and Neurologists a lot of confusion because my full set of symptoms are not fully in line with their normal experience of a CSF leak. 

Most doctors experience of CSF leaks are mainly from epidurals that have gone wrong or lumbar punctures (LP’s/ Spinal Taps) where the hole in the spinal dura won’t close. Also people can obviously get cranial/ skull leaks from trauma, which can be seen through spinal fluid dripping out your ear or nose. These can be (but not always) easier to diagnose and often easier to treat.

Spinal leaks, whether spontaneous or through trauma (as in my case), often cannot be easily seen or proven. Which makes diagnosis and treatment problematic.

Mine also seems to be connected to the original post-concussion diagnosis. Which tends to confuse doctors because I often present at A&E with symptoms that are more in line with post-concussion syndrome/ post traumatic migraine.

The telling sign that there is probably a CSF leak, in the mix, is that I have the postural element of the injury. I am generally symptom free lying flat, but symptoms build when upright. If I am upright for too long the symptoms will also extend to lying down for a while after, but they always dramatically improve. 

This has lead the Neurologists to conclude that they think I probably have a CSF leak that exacerbates post-concussion migraine symptoms. I will try and explain this to you further in the hope that it might help other people with similar issues.

A couple of weeks ago I was admitted to hospital following an almost total relapse of symptoms. There are a few things that were slightly better than last time I was admitted 6 months ago, but generally it’s the same thing. I think perhaps part of the difference now is that I know how to manage the injury better than I did before. 

Here were my symptoms I was admitted with (in no particular order). 

Dizziness,
Balance issues,
Walking difficulties,
Speaking difficulties, including slurring of words and inability to fully express myself.
Drunk like behaviour.
Pressure in the head.
Neck stiffness & pain.
Pain at the lower back of my head.
Photophobia (light sensitivity)
Shaking and spasms.

These are actually almost the same symptoms I had every time I visited A&E since my injury (4 in all). The third visit I was in such acute pain in my head/ neck that they tried to give me morphine, which rather than take the pain away, made it worse and made me very sick so they decided to admit me for a brain MRI scan.

It was only through this first admission that I finally got to see a Neurologist who raised the possibility of a CSF leak due to the postural nature of my symptoms.

The consultant looked into two possible diagnoses: Post traumatic migraine from the concussion or a CSF leak.

Neurology then set about to investigate the CSF diagnosis which proved more problematic than we would have hoped.

If you read up on CSF leaks you will soon discover that diagnosis can be immensely difficult.

Unless you have recently had a lumbar puncture/ spinal tap, an epidural or spinal surgery and then present with postural headaches. Proving you have a leak and finding it can be a bit like looking for a needle in a haystack.

They firstly did an MRI brain with contrast which came back clear of Intracranial Hypotension or ‘brain sag/slump’. This is the condition that low CSF causes. Basically, because there is less fluid round your brain, your brain then falls in your skull, due to gravity, when you are upright. The pain and symptoms are due to the pressure this puts on this area of your head and the stretching/ squashing that occurs.

It is not unheard of for these scans to come back clear. And from what I have read, severity of symptoms do not necessarily correspond to these scan results.

So they attempted to find a leak site in my neck via MRI. This also came back normal. Which is again not unusual.

The leaks are often minute. Most imaging, even MRI, is not powerful enough to locate them. 

They then did a lumbar puncture/spinal tap to look at opening pressure. Mine was a 7. They said they would consider it to be low if it was 8 or lower. Worse cases of CSF leak are often a 3 or below. (Normal is about 10-20).

So that supported the diagnosis but it was not a definitive diagnosis. 

When they did the LP I knew it was the same sensation I felt. However, following the LP I had an additional headache which was even worse, again postural, and all my other symptoms increased too:

Head pressure,
Neck pain,
Dizziness,
Instability walking etc.
My back also hurt a lot at the site of the LP. 

These restored back to what they were before the LP a couple of days later.

I then had an MRI of my spine which came back clear. 

The neurologists then decided to try a high volume blind epidural blood patch. Which is used to treat spinal CSF leaks when they can’t locate the leak site.

Usually if you have had an LP or an Epidural they know where the leak is so they can inject the blood patch into the same location in the lower epidural space in the spine. This is supposed to help seal the leak through the blood clotting and generally increase the spinal fluid pressure. These procedures have a high success rate. 

It wasn’t easy for them to agree to get an anaesthetist to do a blind patch at first, because of the higher risks involved and lack of evidence to back up the diagnosis. Blind blood patches are a lot less effective than ones directed at the actual leak location. 

The problem is we think, it is possible, that my leak might be in the upper or even cervical (neck) spine. To do a blood patch higher up the spine is very high risk because of the lack of space between the vertebra to reach the epidural space and because of the proximity to the brain.  

Eventually a team of anaesthetists agreed to do a blind blood patch and they took me down to surgery to do it. I think they managed to inject 30ml of my blood, taken from my arm, into the epidural space in my lower spine. 

The consultant anaesthetist then advised not to do a second blood patch, even if symptoms did not improve. When people have blood patches following an LP or epidural CSF leak, relief can often be quite instant. They will also often do a second or even third blood patch if the first one fails. In my case they were concerned about doing another high volume patch without further investigation. 

I laid flat on my back for about 15 hours after mine, without moving, to help it to ‘take’.

When I was able to get up some things had improved, some things hadn’t. 

I had the choice whether to be discharged or stay at hospital to pursue more investigations and treatment (which was not a simple route). I chose to go home (having been there 18 days) and work on my recovery and hope and trust that things would improve.

And things did improve, a lot.    Within a few days I was back on my feet. I could walk on my own again outside, I could drive short distances. I didn’t have as much problem with head pressure and pain.

But it was still there. 

I always put this down to the fact I had had a brain injury (concussion) prior to this and had been in bed for 3 months.

Surely things would just take time. 

Symptoms improved gradually and I thankfully pretty much got back to normality.

But I still suffered with head pressure, head pain, spaced out symptoms, dizziness, back pain (from the blood patch) and neck pain.

I still found I could not get through a whole day without lying down flat. Life became about pacing myself. Staying positive and believing that things would keep improving. 

Then I relapsed. 

Perhaps I did too much.
Perhaps I took too many risks.
Perhaps it happened regardless of what I did.  

Over the period of about 2/3 weeks things got progressively worse. I had to lie down flat more and more during the day to cope and compensate.

I went back to the GP, got a referral back to Neurology (which I would have to wait for an appointment for). Tried lying down for most of two days to see if that helped.

Then symptoms got overwhelming and we headed back to A&E for the fourth time this year. As I talk about in ‘Learning Patience’. 

The thing that again confused the Neurologists was why did I always present with symptoms more in line with post-concussion syndrome/ post -traumatic migraine BUT the symptoms are obviously very postural.

Why did I not just present with an unbearable postural headache, as in ‘normal cases’?

I understood this dilemma myself because when I read about symptoms. Most people would talk about unbearable headaches, and even though I experienced headaches, they were not always fully in line with others descriptions.

In fact, other people’s descriptions were probably more in line with the additional headache I experienced during the couple of days after the LP. That headache was more distinctly a headache as well as increasing all my other current symptoms.

What I tend to experience is nothing like I had ever felt before. 

I will try and explain the sensation I experience at its worst

I sit up, almost instantly my head begins to cloud over and the pressure builds, that makes me feel dizzy and unstable on my feet. Each minute of standing this increases. It feels a bit like you have been whacked round the back of your head by a heavy object.

What feels like a stiffness in the upper neck then increases followed by what moves from an ache to an increasing pain at the bottom back of my skull.

After a bit it can feel almost like I am being strangled, from the back of my head. I can also feel a pressure behind my sinuses, it can make me cough and gag, the front of my neck gets tense. I struggle to think, can struggle with my words, increasingly struggle to walk without support and then if I am up too long I can end up twitching/ shaking and having small spasms.

You become consumed by doing what has to be done as quickly as possible and getting back to lying flat. I feel very irritable and shaky because I just physically and mentally cannot cope with being upright.

The longer you are upright, the worse it gets and the longer it takes to recover lying down. Once back lying flat it often can take a few minutes to recover from what can only be described as the trauma of being upright. (Occasionally it takes longer to recover). 

The doctors always ask me ‘do you have a headache’? or ‘how is the headache’? But to me it’s not simply a headache.

It’s not just about a crazy ‘pain in my head’ it is more than that. It’s an intensity that is unrelenting and sets off various other symptoms. Pain is one of those but not necessarily the over riding symptom. 

The overriding unbearable symptom is intense unrelenting and increasing pressure in my head that makes doing anything immensely difficult. Until I reach a point my body and mental processing cannot cope with it anymore and it begins to react accordingly by shutting down.
I just cannot function properly sitting or standing. 

It is a headache, I guess, but nothing like headaches I ever had before my injury. I often feel the pain more in my upper neck than head.  Previously, the very occasional headaches I had were always at the top front of my head and were completely different. There is no comparison. I think it’s perhaps more migrane like but I never had a migrane so I don’t really know.

Headaches are unpleasant. You lie down and they are still there. You take painkillers to get rid of them. (I have occasionally had a normal headache in addition since my injury – they don’t go away lying down). 

These so called ‘headaches’ feel like you are being tortured. My body literally cannot handle being upright. Which is why when I have to sit up to travel to and wait in A&E waiting rooms, my symptoms always increase and I act like a drunk person. I cannot physically or cognitively cope with the strain put on my brain.

When eventually I get to lie down (usually before I see an A&E consultant) I am suddenly not quite as bad. Which is probably one of the reasons the first two times I was discharged as just having post-concussion syndrome.

We didn’t understand the relevance of posture at that time. 

When I finally was admitted. I still didn’t fully understand the need to be fully flat. My bed was often at first a little raised. I used large pillows. I sat up to drink drinks, eat, get changed, use the bathroom, speak to people.

I now realise that is why the pain built up to be unbearable. I have learnt not to do that any more. Which means I have generally learnt to manage the pain, without medication.

As long as I lie flat pretty much for 24 hours a day. 

It’s a part positive of the condition – I get relief from the torture. 

But you obviously can’t live a normal life like that. 

“When we face life challenges, we must find a way not only to survive them, but in time, to actually grow from them. We must find a way to keep on keeping on, no matter how hard or painful life becomes. As a result, we can avoid getting “stuck” and live life in spite of our circumstances.” – Kelli Horn

After a few days in hospital, after my relapse, they agreed to try another blind blood patch. Which was again the subject of great debate between the Neurologists themselves and the Anaesthetists (especially because they had initially advised only doing one). 

So that is what I am currently waiting for. They said I could have it as an ‘outpatient’ so I get to wait at home rather than hospital. (One blood patch was already cancelled though because of lack of theatre time available and then a subsequent recovery bed). 

Blind Epidural blood patches usually have a 50% success rate. Being a person of faith in God and optimism I am choosing to believe it will work and again get me back on my feet.

It did last time. We are trusting it will again. But this time we are praying that it fully heals and will never come back.

You don’t realise how precious a normal life is till it is snatched away from you. 

“All the world is full of suffering. It is also full of overcoming.” – Helen Keller

I have and am learning a lot and developed more compassion towards others with long term health issues. Compassion means ‘to suffer together’. There is a beautiful thing that can happen if we allow our own suffering to develop our compassion towards others.

Humanity becomes more unified, gracious and loving as I wrote in ‘We Are All Messed Up’.

If you suffer with post-concussion or a CSF leak I hope that you find a way through, discover the strength you will need and that you will find doctors who understand and can help you.

Having a unusual injury or illness is hard, but let’s choose to keep holding on to hope for the future. Encouraging one another and hoping that doctors become more knowledgable and understanding of this debilitating condition.

There is always hope, there is always progress being made. Life may be hard but there is always something we can do and achieve.  

Even amidst the pain. 

“Your past mistakes, hurts & pain can help give someone else a future. Whatever we have gone through enables us to help others.” – Christine Cain


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.

I would love to hear about your stories and experiences with concussion, post-concussion and CSF Leaks? Please do comment below. You never know you might help someone else in the process.

For more of my posts on this subject please see my first post here. You can see my ongoing series of posts by clicking on the CSF Leak and Concussion menu at the top of the page. 

To read more about my ongoing story of living with a chronic spinal CSF Leak click here.

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

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

A fantastic informative video that you can refer to about spinal CSF Leaks, their symptoms and treatments is The Mystery Headache: Migraine, Positional Headache, Spinal Fluid Leak? by Professor Ian Carroll at Stamford University Hospitals.

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

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

Surviving the Storm Eight Months On: My Battle with Concussion & A CSF Leak

A day.
A moment.
An accident.
8 months ago.
When things went wrong for a season.

A fall.
A brain injury.
An undiagnosed spinal injury.
Months of craziness.

This is my update.

It’s for those who know me and it’s for those who don’t. I know some of you are finding these blog posts by searching online.

I want to tell you my story. In the hope that it helps you. Perhaps your own story involves injury and illness, brain or spinal injury. Or maybe it involves another type of storm.

We all face stormy seasons in our lives.

Life is a journey of discovery. We are constantly learning about ourselves and what is around us.

Self awareness is an important part of our growth. My husband and I are on a constant journey to understand life better: Why do we do what we do and feel what we feel? What is our purpose in life and how do we live it out?

We then hope what we learn might help others too.

The journey of self awareness is a humbling journey and yet it is a healthy journey. It helps us to process and break free from thoughts and behaviour that seek to control us.

The past 8 months have been one of the most intense personal journeys of growth I have experienced. As I wrote in Surviving the Storm Six Months On, I have come face to face with many of my weaknesses. Which has been hard and painful, but also a journey of discovering new strength.

wolken

So 8 months on.
Where am I now?

I would love to say that everything is fine. That I have made a full recovery and we can leave it all behind us.

But that is not the truth.

At this moment, I am writing this post lying flat, which still forms a significant part of my day. I was up at 6am, as it was the kids first day back at school. I rushed about getting them ready, dropping them off, shopping, sorting, cleaning etc. Then by about 10am I recognised that I needed a bit of ‘down time’ to ward off symptoms and to pace myself through the day.

If you have read my previous posts, know about CSF leaks or have spoken to me about it, you will know that the postural side of the injury is a key part of it.

Basically when you have a CSF leak, your spinal fluid leaks either from your skull or from the part of your spine that holds the spinal fluid.

We never located my leak on the various scans I had, but we assumed mine was probably a spinal leak. This means the spinal fluid leaks into your body from a tiny hole or tear in the membrane that surrounds your spinal cord.

This results in ‘brain sag’. The brain lacks the support of the spinal fluid and so drops in your skull when you are upright (either sitting or standing).

This causes various problems. The most reported symptoms are severe headaches and neck pain as everything gets squashed and stretched inside. But there are a multitude of other symptoms.

One of the key ones for me at first was severe dizziness and major balance issues (I could hardly walk without support for almost 3 months). This is so much better but still manifests as a spaced out/ cloudy feeling quite a bit.

I was diagnosed with a CSF leak about 8/9 weeks after my initial fall off a ladder (following an initial post concussion diagnosis). After finally being admitted to hospital with various symptoms, about 18 days lying flat in a neurology ward, having 3 MRI scans, which were inconclusive, and a lumbar puncture, which showed low pressure spinal fluid – I had a blind epidural blood patch. (They take blood from your arm and inject it into the epidural space in your spine, in the hope that the clotting helps to heal the leak and increase the spinal fluid pressure. Mine was a high volume blind blood patch, because they couldn’t find the leak on MRI scans, which is not unusual. If they know where the leak is then patches are often more successful).

All this treatment had a significant positive impact and, as I wrote in my first Surviving the Storm post, it brought a sense of normality back to my life. I could spend much more time upright. I was able to do most things and thankfully could drive again (although I stick to short journeys at present because my head can still cloud over at times).

Since then there has been a general gradual improvement.

However,

I am still not back to where I was pre-injury and that is a challenge. I have days that are better and days that are more difficult. But the persistent symptoms are still a daily battle.

I have had to develop new routines that involve regular ‘lying down flat’ breaks. Often these are around lunch time and in the evening, although it varies a lot as I try and preempt what I need to do and lie down before and/or after going out.

I tend to find evenings harder generally. So on busier days I often spend a lot of the evening lying flat (either in bed or on the sofa – as long as my head is pretty flat). Less busy or less symptomatic days it is not as necessary.

I feel extremely blessed that in general the pain scale is nothing like it was around the time I was admitted to hospital. Back then it regularly reached 8 or even 10 out of 10 (comparable to having a baby ladies).

These days thankfully the pain is not as severe and takes longer to build up.

It is nothing like any headaches I had ever experienced pre-injury.

It’s more of an intensity, a pressure that builds up in the lower back of my head and in the top of my neck, leaving my neck feeling really stiff and painful and my head full and cloudy.

When I do lie down often that same feeling often drops to the bottom of my spine around where I had the blood patch.

Similar sensation; different place.

One way I explain it to others is it’s like having a really bad head cold and your head is so full of pressure that it’s hard to think and do things. If it’s a particularly bad one I also can feel it behind my sinuses which makes the sensation more head cold like.

This feeling varies in intensity throughout the day. Often, first thing, I feel fine. It then builds up to varying levels depending on what I am doing and how much lying down I have done.

As it builds up, things get harder. I might take some paracetamol or ibuprofen which helps a bit. Caffeine is also proven to help, so I usually get dosed up on that in the mornings.

As it gets worse I tend to go quieter as everything gets harder, both mentally and physically. The pressure, pain and stiffness builds, which is often coupled by a spaced out feeling and still sometimes a bit of photophobia.

Most of the time I will look fine outwardly. But if you see me when it gets really bad you might pick up on a spaced out, distracted, stressed or pained look on my face.

I often try and keep going for a while when I get like this, until I reach a point where it gets so bad I can’t think straight, the pressure and pain builds and I know I need to rest and lie down. I also try and preempt it and lie down before it gets too bad.

When I lie down there is an element of instant relief. I often say to my husband before I lie down I sometimes just feel like I want to go to sleep; you just feel wiped out. But soon after lying down I can think straight again, my head gets clearer and the pressure eases.

(This was often the way it was at the start, following my injury. I found I could have decent conversations with people if I was lying down. But I didn’t last very long and often couldn’t think straight for very long sitting or especially standing or walking).

The current physical symptoms vary in their intensity on different days, depending on how busy or strenuous the day is and even what time of the month it is (yes ladies it gets worse then!)

During the recent summer holidays things generally seemed better. I felt I had more energy and perhaps needed to lie down a bit less. It helped that I could take it easy in the mornings, lie in bed for longer and add in breaks where necessary.

This summer we have done a lot of clearing out and sorting thorough stuff, which I wrote about in my last post. That kind of work is quite physically demanding so I would rest more at the start of the day and then by the end of a day I usually had to lie down more.

It’s all about managing your time and energy reserves. I also spend time praying and getting encouraged with great words from the bible and other quotes. This helps keep my thoughts together and focus on good things through the tougher and more frustrating days.

wolken
Storms come.
Life goes on.
We cannot wallow in the challenges or they will swallow us up.

I have been getting better and I want to hold onto that and keep believing for complete healing and freedom from this storm soon.

The storm has calmed but it has not yet fully passed. You learn to live with it to an extent and yet I also choose to believe it will fully heal in time.

My faith encourages me to not live life defeated or deflated. Hope always drives us forward. Even though it can be a humbling process balancing belief and reality.

I am deeply grateful for all the health and healing already attained and the sense of normality it brings.

Most of all I am thankful for the good that my experience will bring. There are always positives to be found, even in hard times. Even the darkest times can be used for good.

Whatever your unique storm:
Never let go of hope.
Never stop believing.
Never stop seeing the good, even when it’s painful.

Perspective is vital.

There is always something to be thankful for.
There are always others worse off than you.
We all suffer and feel pain in one way or another.

As a popular saying goes:

“Life is not about waiting for the storm to pass; it’s about learning to dance in the rain.”

I have decided that I will always find the ways and means to dance through life, even in the midst of the rain.

It’s not always easy, but it is the only way to live and thrive through both the ups and the downs of life. It is the only way to find the strength to survive the storm when it hits.

This is my story of a unique season in my life. A storm that has come, that is passing but is taking its time to fully leave.

I don’t know what storms you face? An injury, illness, relationship breakdown or bereavement? Perhaps your prognosis is much worse than mine? Maybe your storm is hidden from view?

But there is a way forward:

We can learn how to dance in the rain.
It is the only way to thrive in the midst of the storm.


I would love to hear about your stories and experiences. Please do leave a comment below or on my social media links.

You can read the first post about my injury here and my six month update here. I usually write my blog posts on my iPhone during my ‘lying flat’ times. Initially following my injury I could not even look at a phone or computer screen for more than a few minutes without feeling exceptionally ill. I am very grateful to be able to do this now.

To read more about my ongoing story of living with a chronic spinal CSF Leak click here.

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

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

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

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

 

Surviving the Storm Six Months On: My battle with Concussion & a CSF leak

This post is a follow up post to Surviving The Storm: My Battle With Concussion And A CSF Leak that I wrote 3 months ago.


Life is a journey through different seasons. Seasons of celebration, happiness and success and seasons of loss, pain and frustration.

Sometimes unexpected things happen and life changes in an instant. Sometimes that change is temporary. Sometimes permanent. But it always brings a season of adjustment with it.

At the start of 2015 my life was going along normally. It was the start of a new year; a new season; a new time.

Then I had an accident.

In many ways, it was just a small accident. In an error of judgement I put a small step ladder on an uneven surface whilst painting. I painted with it there for hours, then in one moment the ladder toppled over and I fell.

One mistake on my part. And one I have paid for over the past six months.

We all make mistakes every day. Often the consequences are minimal. Then a day comes when we make a mistake that has bigger consequences.

We can’t change what happened.
We can only learn from our mistakes.

That journey is never easy.

When I fell, I hit my head, back, neck and arm. It was a blunt but forceful impact to my lower head and although I felt the impact and felt slightly dazed, in general I actually felt OK.

So I did what I always do: I got up and carried on.

I even joked to others about falling off that ladder – oblivious to what had actually taken place.

Then as I wrote in Surviving the Storm, over the next week my injury caught up with me and everything began to unravel.

Grunge Background

Brain injuries like concussion, post concussion and CSF leaks are tough. They are difficult to fully diagnose and yet so debilitating. Your brain is like mission control to your whole body and when your brain gets rattled or strained so many things get out of sync.

I am one of the blessed people whose injury, although serious, was comparatively mild. Severe brain injuries are life threatening and permanently life transforming. I am so very thankful that it was no worse.

However,

It was and still is a storm in my life. It was debilitating. It changed my life for a time. It is still improving but it has not yet fully passed.

Four or five months ago, at its worst, the only way to ease the symptoms was to lie flat and do nothing. For hours, days and weeks on end.

Have you ever tried that?

Doing nothing but lying flat in a dark room.

It can be torture. Especially when you are dizzy and in pain.

I was then finally admitted to hospital 8 weeks after the initial injury. Although tough in itself, I was thankful for this, because we got some answers and I was finally diagnosed with a CSF leak (cerebral spinal fluid leak).

Many people will not know that after a few days in hospital I faced one of the darkest days in my life.

Some events took place that probably during an average day I would have coped with and managed mentally and emotionally a lot better than I did.

But on that day a pattern of events unfolded that involved a senior hospital staff member with an exceptionally bad attitude.

And it totally floored me.

I have never felt so utterly weak and helpless. I was in so much pain, was mentally impaired by the cloudiness and dizziness, and faced a very unpleasant situation that I was powerless to deal with.

Those two days (because things got worse before they got better) were probably two of the the hardest days of my life, in many ways.

I have never felt so desperate, so weak, so intimidated and so vulnerable.

I cried a lot that day, desperately and deeply (in a hospital ward full of other people).

Have you ever come to the end of yourself?
When you have no strength left physically or mentally.
When you feel desperately vulnerable.
When you can’t fight any more.
When you don’t know what to do.

At its worst my injury left me in severe pain and my body would start shaking violently in response. As this happened my mind would cloud over and take me into a drunk-like state.

You can’t think straight, struggle to talk, can hardly stand and walk, and it can be quite distressing.

You feel immensely vulnerable and it was in my vulnerability that I faced this intimidating situation that I couldn’t deal with alone.

In that moment I thank God so much for people who loved and cared for me. There was a wonderful nurse at the hospital who reached out to me in my desperation with compassion and understanding. My church family had already dedicated a week to praying for me and they fought for me spiritually in my dark hour.

My husband was at a pre-planned family gathering with my girls that day (over 2 hours away). It was to celebrate my Mum’s birthday, in her remembrance (just over a year after her death). He dropped everything to leave, earlier than planned, and got to me as soon as he could (about 3 hours later).

In my darkest hour I was physically and mentally wrecked and alone, and yet I did the one thing I could: I reached out to God in the midst of my desperation. 

I knew that He would carry me.

When there was nothing left of me I knew He would hold me.

When I felt the most vulnerable I had ever felt, I knew I had advocate who was fighting for me.

And that is what got me through. Believing, hoping and trusting that things would get better.


I have never felt so desperate, so weak and so vulnerable.


CSF leaks can be very hard to fix. There is still a lot of uncertainly about the best ways to treat them. After two and a half weeks in hospital I ended up having a blood patch (where blood is injected into the epidural space in your spine) which helped a lot, but it certainly didn’t solve everything.

I again had to decide to hold onto my hope and have faith that it would get better. And things have got better. A sense of normality returned, but even 6 months on life post-injury is still a challenge in many ways.

I still can’t do everything I once did.

And that is hard.

As I shared in ‘Is Busyness a Choice?‘ I was a busy person. One of those people that always had a lot on and did a lot of rushing about.

But at the moment I still can’t rush about like I used to.

And it is SO frustrating.

I still have to sit and lie down at regular intervals. Especially when I have a lot on.

I often feel lightheaded, my head gets cloudy and a spaced out.

Life takes much more effort. Which is a mental, as well as a physical challenge for me.

I am a doer, a get up and get on type of person, but my body won’t always let me do that at the moment.

When your energy levels are low, everything becomes so much more difficult. The things you have to do become that much harder. And even your mental processing becomes impaired. These are all things that I still have to battle through daily.

I have to have wisdom to work out my days. If I know I have a lot to do I need to make sure I have clear rest points in the day, both before and after the activities I need to do.

It is manageable.
But it is frustrating.

And yet despite all these challenges I have learnt and grown so much.

I have so much more empathy and awareness of people with health issues. I hardly ever used to get ill, so my experience of battling this has given me more compassion for people who are struggling with injury and illness.

I have had to develop a longer term perspective so as not to get overwhelmed with the daily challenges. I have to see the bigger picture. 

I have had to learn to say no to doing too much, allow other people to help me, and tell people when I am struggling. Which doesn’t come easy to me because I fight against self pity at all costs and do not enjoy being a victim.

Life has been more frustrating.
I have faced increased feelings of discouragement.
But I have certainly become more self aware and developed more humility.

The last six months have been tough in many ways.
However,
I believe we can never give up or lose hope.

Without hope we have nothing to live for. It is always faith, hope and love that give us confidence for the future.

I have faced my own vulnerabilities and weaknesses like never before. And more than ever I know I cannot rely on my own strength to keep going and do all I am meant to do.

But that is not a bad thing.

Coming face to face with your own weaknesses and vulnerability can be a good thing.

In the Bible God said this to the Apostle Paul when he was struggling with his own weaknesses:

“My grace is sufficient for you, for my power is made perfect in weakness.”

Paul then wrote in response:

“That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong.” 2 Corinthians 12:9-11.

When I feel weak, I realise that I can’t ‘do life’ on my own. I realise that I don’t have the capacity and strength alone to face the challenges that life brings. But I do know God will work His power in and through me…. regardless.

That is grace.

The Almighty God uses us fragile humans in our weakness and vulnerability and makes us strong in His power.

When I come to the end of myself I have no where else to turn but God. It is then that God’s power works in and through me in the most beautiful way.

Because when you come face to face with your fragility you understand that we are all the same.

We are all human.
We all have struggles.

It is then, as God shows us His love and grace in the midst of our own struggles, that we can show love and grace to others in the midst of their struggles.

That is the power that works within us.
The power of love and the power of grace.

It is the mystery of God.
The divine paradox.

That weakness brings strength.
And that strength is spelt LOVE.

And love and grace are all you need!

So that’s my journey of surviving my unique storm. It is still not over, but writing this post has been helpful for me in looking back over the past six months, remembering, learning and growing towards the future.

This post has, in all honesty, been written through tears as I attempt to share some of the darker realities and vulnerabilities of my journey.

However, what I do know is that these dark days are not without purpose. They have been used to strengthen me and they will be used to help others.

There is always new strength to be found in weakness. Sometimes the journey to finding it will be painful.

But it is always there to be found.


How do you find strength in weakness?


Comments are always welcome below or on my social media links. 

To read more about my ongoing story of living with a chronic spinal CSF Leak click here.

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

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

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

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

This post was inspired by my last post called ‘Breaking Free! From Pretense’.

Surviving the Storm: My Battle With Concussion & A CSF Leak.

‘The longer I live the more I realise the impact of attitude on my life. Attitude to me is more important than failures or successes, than what people think, say or do, it is more important than appearance, giftedness or skill. The remarkable thing is that I have a choice everyday as to the attitude I will embrace and I am convinced that life is 10% of what happens to me and 90% how I react to it.’  – Charles Swindoll

It’s been a while since I wrote on this blog. In fact, only a few days after I started the blog, I had (what I considered at the time) a little accident and fell off a step ladder and hit my head, neck, & spine as well as sustaining some other minor bruises.

The end result of this little fall was two and a half months of, at times, severe symptoms which were diagnosed by various medical professionals, firstly as Concussion, then Post-Concussion Syndrome & Whiplash and finally, about 3 weeks ago, I was diagnosed in hospital by neurologists as having a spinal CSF (Cerebral Spinal Fluid) Leak. (This is a tear in the membrane that surrounds your brain and spinal cord. It results in the spinal fluid leaking out and absorbed into your body, reducing pressure and causing your brain to drop in your skull.)

I am not sure we really fully know which of my symptoms could be attributed to what diagnosis, at what point. However, in the end, the CSF leak seemed to fit many ongoing symptoms, a lumbar puncture confirmed ‘low pressure’ spinal fluid and I received treatment for this which helped a lot. (This included an epidural blood patch following over 2 weeks of lying flat in hospital whilst taking caffeine supplements & pain relief).

In short I had battled for weeks with an array of symptoms which included:
Severe dizziness
Lack of balance
Pressure headaches
Severe head and neck pain
Cognitive (thinking) impairment
Sensitivity to light and noise
Nausea
Body shaking and spasms
Struggling to walk very far (and only with support)
Struggling to talk at times
A constant need to lie down flat to alleviate/ ease symptoms. (typical of a spinal CFS leak).
Exhaustion of body & mind

Over the last 11 weeks I saw multiple NHS doctors & consultants, nurses, physios, had 3 trips to A&E, one ambulance to the house, a two and a half weeks stay in an NHS neurology ward, a CT scan, X-rays, 3 MRI scans, (all inconclusive) 1 lumbar puncture and 1 epidural blood patch.

I am currently still on the journey of recovery and building up my strength. Not fully back to normal and still have to lie down at times during the day, especially in the evenings, but I am so much better than I was.

It’s certainly been a challenging 11 weeks which totally disrupted my, and my family’s, normality. I spent 22-23 hours a day, for the first couple of months, lying in bed in a dark room, mostly on my own, doing very little and then two and a half weeks in hospital lying flat as much as possible whilst I waited for various tests and procedures.

Grunge Background

After starting my blog in January, the third blog post I wrote was about Perspective: Stepping Back From The Detail To See The Bigger Picture. I wrote about how our perspective is really important and how we sometimes we need to step back from the details to see the bigger picture. I spoke about how sometimes it’s not circumstances that need to change but the way we see what is happening. Sometimes we have to choose to see things differently, we have to see with new eyes.

Who could have known that the words that I wrote at that time could be so significant for me in the days, weeks, and even months after I wrote them. Sometimes it’s our own words that become powerful in speaking back to us. The words we say or write in one season of our life becomes so applicable to another season of our life, in a new way.

So over the past few weeks I’ve learnt a lot about perspective. Many hours, of many days, I’ve had to step back from the detail to see the bigger picture. I have had to step back from the symptoms to get a larger perspective.

Some days you have to fight for a better perspective.
Sometimes you have to push your way through the details to gain a better understanding.
Sometimes you have to step back from the circumstances and choose to change your attitude.

Especially when things can be:
Scary
Unknown
Different
Exceedingly frustrating
Exhausting

When you can feel:
Very unwell
Naive
Helpless
Weak
Uninformed
Mentally impaired

When the new season requires new:
Patience
Endurance
Wisdom
Strength
Faith
Determination

Grunge Background

The past number of weeks again opened my eyes to new perspective. I can’t recall in my life ever being ill for more than a few days. I’ve never had a brain injury before and I really didn’t know a lot about them. I now have a much better understanding, and a better perspective of people who experience them and similar things.

The challenge of mild traumatic brain injuries, is that they are often unseen. They are not a visible injury. Concussions, whiplash, and often CSF leaks, don’t appear on normal CT or MRI scans so it creates problems in diagnosis, all you have is the symptoms to go on.

It’s a humbling process as you try and work your way through the symptoms, often having to rely on the information you seek out yourself, to work out what on earth is wrong with you and how to get the right treatment. It’s a challenge when you are diagnosed with something that people don’t know a lot about. When your illness or injury is not fully tangible, yet so debilitating, and can often only be diagnosed by the symptoms that you experience and have to try and communicate to medical professionals.

So it’s been a season of learning.

Challenge and hardship are often a place we grow, a place we learn, a place we develop. If we choose to approach them in the right way and with the right perspective.

The Bible NLT Translation, James‬ ‭1‬:‭2-4. You can experience joy through challenging times because you know that it is stretching your ability to endure.
The Bible NLT Translation, James‬ ‭1‬:‭2-4. You can experience joy through challenging times because you know that it is stretching your ability to endure.

Sometimes:
We just have to be patient.
We have to keep walking through the storm and trust the calm will come.
We have to face the challenges of life and then use what we learn to make us stronger and help other people.
We have to keep holding on to hope without knowing all the answers.
We have to fight to stay thankful and see the positives within a difficult time.

It’s all about having the right perspective.

It’s not easy.

Some days you have to fight through the frustration, the fear, the worry and the negative thoughts. Until you can again see with a better, more positive and hopeful perspective and step back from the details of your circumstances.

When I stepped back from the detail in my situation, I could see that it could have been worse. Yes this accident interrupted my life, yes it was frustrating, a real challenge. It totally changed my life for a number of weeks and months. However, I had so much wonderful help and support from my family and friends. I have learnt so much and gained a better perspective and more appreciation of life. And I am now coming through my storm, I am doing well in recovery and I am getting back to some kind of normality day by day.

There is never any point in wasting energy on the ‘why me?’ or ‘what ifs?’ A negative mindset, looking backwards or forwards, just destroys you from the inside out. Even amidst very difficult times there’s always something to be thankful for and others worse off than you. I always chose to believe that my storm would pass (even when I seemed to be getting worse rather than better), others don’t have that blessing, the storm just gets worse and doesn’t go away.


Some days you have to fight through the frustration, the fear, the worry and the negative thoughts. Until you can again see with a better, more positive and hopeful perspective.


So again, with new insight, I say that so much is linked to perspective. We can choose to see the positives or become consumed by the negatives in our lives. We can choose remain thankful for the good things, even when we are going through a dark time.

Often it’s not the circumstances of our lives that need to change. It’s our perspective, it’s our attitude, it’s the way we ‘see’ and think about our life.

Sometimes we need to step back from the detail to see the bigger picture. We then realise that often the storms in life come and go. And with the right attitude and a hopeful perspective we will come through it:
a little stronger,
a little wiser,
a little more thankful for daily life,
and have a little more compassion for others.

It’s all about perspective!

I am convinced that life is 10% of what happens to me and 90% how I react to it.’ – Charles Swindoll

Lets keep asking ourselves: What parts of our own lives could we see with a more positive perspective? Self awareness is always the first step to personal change.


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.

I have now written two update posts about my recovery journey at 6 months and at 8 months; I then have a series of posts about a relapse at 9 months  when it was decided that I probably never had a concussion and all my symptoms could be attributed to a spinal CSF Leak

To read more about my 20 months on story of living with a chronic spinal CSF Leak click here

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

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

A fantastic informative video that you can refer to about spinal CSF Leaks, their symptoms and treatments is The Mystery Headache: Migraine, Positional Headache, Spinal Fluid Leak? by Professor Ian Carroll at Stamford University Hospitals.

To find out more about Concussion and Post Concussion this video is a great resource: Concussion Management

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

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