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.

 

Advertisements

Finding Peace In The Midst Of The Storm 

“Peace does not mean to be in a place where there is no noise, trouble or hard work. It means to be in the midst of those things and still be calm in your heart.”Author Unknown 

Do you ever crave true peace? 

We live in a world that competes for our attention. There are so many voices speaking at us and to us. Both from the outside, as well as the thoughts from within.

We often don’t feel peaceful. 

Decisions,
choices,
stress,
trouble
and people …
With all their thoughts, needs and opinions;
battling for our attention. 

Some days we feel like we are drowning in noise. 

Even in the silence. 

It is actually often in silence that our own thoughts become louder. All the different opinions, perspective and voices from ourself and others fly around in our heads, as we attempt to work out how to live this life as best we can.

It’s stressful.
We long for peace.
We search for it everywhere:

Perhaps a holiday will help.
Maybe TV will block it out.
Perhaps having a few drinks might drown the noise.
Maybe that bar of chocolate.
The perfect partner.
A night out. 

…Will distract and cover over all the noise, insecurity and stress that we feel in the hidden depths of our hearts and minds.

But when those moments of distraction have passed – the noise is still there.  Earlier I typed in ‘peace’ and ‘inner peace‘ into Google. This is what it found:

“Inner peace (or peace of mind) refers to a state of being mentally and spiritually at peace, with enough knowledge and understanding to keep oneself strong in the face of discord or stress. Being “at peace” is considered by many to be healthy and the opposite of being stressed or anxious.” – Wikipedia 

I love this definition and can totally relate to it. I have felt it, it is there in my heart. It is what gives me strength in hard times.

But some days I still have to seek it, find it and receive it. 

Peace is always there, but it sometimes gets hidden by all the other noise. Or we can get distracted from it, by the force of the storm around us.

I am in a storm right now that won’t go away. Whatever we do it won’t seem to budge. I have a spinal/ brain condition, from an injury, which means I have to lie down flat all day (apart from using the bathroom etc). Otherwise I feel exceptionally unwell.

Sometimes things go wrong in our lives. Regardless of how positive you are. How much you fight it. How much you pray. How much faith you have.

Bad things still happen. 

Sometimes we are responsible or someone else played their part. Sometimes it’s the combination of a crazy set of random circumstances. Sometimes it is a mix of the two.

But tough things do happen. Storms will come that won’t seem to budge.

And all we can do is survive them. 

But is that all we can do? 

Maybe we can do more than that. Perhaps we can thrive in the midst of them. Letting the storm rage around us, while we just bask in the peace within us.

Is that really possible? 
This is the place I have reached again in the last few days. To a new depth. 

The peace has always been there over the past 9 months. In fact, neither my husband or I expected or really worried that my injury would cause major health issues for this long.

Over the years, we have learnt to look at everything positively and with faith. I never even begun to imagine that all this could happen after ‘that fall’.

But it has. 

When I was first told I had a concussion – I dismissed it, in part, thinking ‘well it can’t be that bad’ I am sure I will be OK in a few days.

You see I am used to ‘bouncing back’ I have never really been ‘ill’ for more than the occasional few days. I am normally a very healthy person.

When they then told me I had Post-Concussion Syndrome‘ and I would probably be out of action for 8 weeks. I honestly thought – nah not me – give it 4 weeks tops.

When I was then diagnosed with a CSF leak after 9 weeks, I thought OK one epidural blood patch will do me and I will bounce back – no worries – and all this will be over. 

When it didn’t ALL go away after my first blood patch, I believed it’s perhaps just going to take a bit of time – I’m going to be 100% better soon. 

When five months later things started getting worse again, I thought, this is just a blip I’ll just take it easy for a bit and then I’ll be back.

When I completely relapsed and ended up back in hospital – I thought, I will be OK, they will give me another blood patch, I’ll be sorted and it’s all going to go away.

But that was nearly 4 weeks ago and there seems to be every barrier being thrown up to stop this blood patch from happening.

My condition is apparently complex. 

I have learnt that sometimes storms linger for a while. 

Whatever we do,
Whatever we say,
Whatever we pray,
Whatever we believe,
the storm lingers.

What do we do when nothing is working? When we are tired and weary? When we don’t know what to do anymore and there seems no way forward? 

There are two things we can do.

  1. We give up, allow ourselves to sink into self pity and be carried away by what is happening. Letting it begin a process that will consume and destroy us, our relationships, and our mental and spiritual health.
  2. We choose to dig deep and seek out the inner peace that is available in the midst of the storm, and keep on moving forward in faith.

Number one is not an option for me. I will NOT allow what is happening around me and to me to steal my inner peace and wreck my relationships. I won’t let it dictate how I should behave.

Because when there is nothing left, I still have God. Even when things are tough, I still have faith. Even if the wait goes on, I still have trust.

When the storm rages I can have a peace that passes all understanding. AND I KNOW, THAT I KNOW, my relationship with Jesus will sustain me through all the trials and all suffering.

If my faith in God and the peace I have only remains firm in the good times, then my faith is very shallow.

But when I can say:

I DON’T UNDERSTAND THIS.
The way forward is not clear.
It is really hard.
I feel stretched and challenged everyday.
I have moments where I want to give up, crumple in a heap and get angry at everyone.
Moments that I break down because it’s too tough, I am again in pain and there is no end in sight. 

However, despite it all… 

MY GOD IS ALWAYS GOOD AND ALWAYS FAITHFUL.

That is when I know that my faith is secure. That is the moment that I know that I have peace because Jesus is with me every step of the way.

Like a small child whose anxiety and fear goes away because their parent is by their side. I have a Father in heaven who walks beside me saying “You are going to be OK because I am with you – ALWAYS. I will love you through this and cover you with my grace and strength.”

I no longer need to understand it all. I just have to trust in Him.

That is the inner peace that passes all understanding. That is how we can rest in the storm. In a place that discouragement, worry, anger, bitterness and blame can no longer eat away at us.

The storm then looses it’s power over us and we begin to thrive in it’s midst. Growing stronger, getting wiser and taking hold of that all consuming peace that never lets us down and empowers us to keep pressing on regardless. There is always peace hidden in the storm but you have to learn how to seek and find it. 

You have to learn how to seek and find HIM. 

“… God’s peace … exceeds anything we can understand.” –Philippians‬ ‭4:7‬ ‭The Bible

How do you find peace in the midst of the storm? 


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 Beauty Revealed Through Brokenness

There are seasons that come in our lives that challenge us to the core of who we are. Times when, for all sorts of reasons, it feels like a light is being shone into the depth of our hearts, revealing the extent of our human frailty and weakness.

We can feel exposed and vulnerable. 

Our confidence is slowly chipped away, as our lives feel like they are being rigorously pruned. We can see all the branches being chopped off and lying on the ground around us.

It’s hard. 

There are moments when we feel so exposed that we wonder how much more we can take. 

The thing is, pruning is not a bad thing. Any gardener knows that you have to prune a bush for it to be healthy and grow better. Sometimes the pruning process leaves the plant looking bare and weak. But we know that actually it is making the plant stronger.

Following my relapse 3 weeks ago I have had to wait a lot. In fact, I am still waiting for treatment (an Epidural Blood Patch) for a recurring CSF leak, which keeps being delayed due to logistical problems in arranging this at our local hospital.

The longer the wait, the more you feel challenged. Patience gets harder over time, especially when you are unwell. Our patience can be short lived and we soon find ourselves in a place where endurance has to take over.

It takes a lot of strength and courage to stay positive during challenging times, particularly when they stretch out and do not appear to be resolving. 

When you know exactly how long you have to wait, you may find it hard, but you know you only have to keep going for a time. When the waiting becomes open ended, it gets a lot harder to maintain a good perspective.

Each new day requires new perseverance: your frustrations grow, negative thoughts and attitudes increasingly knock at your mind – coaxing you to let them in.

In these times perspective matters a lot. We have to see the bigger picture or we will become consumed by the daily challenges.

Something that has helped my perspective recently, is seeing my own journey in the light of the process an artist used to sculpt a work of art.  

A lump of stone or wood has to be crafted. It is the artist’s canvas. He carves into it and shapes the strong and solid material.

He strips back the strong material to reveal its hidden beauty. A design so intricate and detailed that it will draw people to its workmanship. It will speak and connect to people far more than the original block it was carved from.

The sculpture is a message or a gift given to the world by the artist who created it.

The artist reveals the true beauty hidden within the strength of the solid block of stone or wood. It always existed but it had to be foreseen before it could be revealed. 

The block first has to be broken and shaped to reveal the creator’s vision. 

This is the process I choose to believe is taking place in my life at the moment. I believe my injury was an unfortunate accident, but I know it is and will be used for good. 

It is painful but it is not without purpose. 

When your health is challenged over a long period of time, you inevitably feel weak. But the weakness isn’t only physical. It effects everything. It challenges you mentally, psychologically and spiritually.

You can feel stretched beyond what you have ever known. 

You don’t understand it and can’t seem to fully break free from it.

It’s easy to give in to the flood of self pity. Refusing it is hard. You have to learn how to fight and stand your ground from a place of peace and rest. You have to fill your mind with better things and feed on truth that strengthens you.

It is not easy.  

But! 

If we can embrace the journey of brokenness we actually become stronger. The process can shape us into something more beautiful, if we let it.

As we are stripped back and stretched, our true selves are unveiled.

We won’t always like what we see during that process. 

Our vulnerabilities and insecurities are exposed. We become more aware of our emotions and thoughts – both good and bad. Particularly, when also you have to rest a lot and don’t have a busy life to distract you.

Your thoughts are louder in silence. There is less to distract you. 

If we can learn to see and face these, we become more self aware and can work through them. That is what makes us stronger. That is the beauty of brokenness.

For me it’s an ongoing journey of grace. 

I know I am being stripped back. I know my identity is being challenged daily.

But I choose to embrace this process of brokenness, of being stretched and stripped back, because I know it is breaking through to who I really am and who I am meant to be.

I see that a storm that has tried to destroy me, in various ways, is being turned around into something beautiful. 

I am being crafted and designed into something more meaningful, more unique, with more depth.

My creator is taking my life and using everything that comes into my life – for good. Regardless of whether that thing comes to bless or hurt me – He will use it to make something more beautiful in the end. 

I am not talking about physical beauty. 

I am talking about the inner beauty of purpose and character. The beauty of being broken and yet in the brokenness discovering who you really are.

The beauty that comes when we surrender to the creator who has envisioned and seen our potential since the beginning of time.

The one who takes the same human mould we all have, but each time creates something unique, unlike any other. He can then take our past, present and future and shape it into something of value, something that makes a difference.

The creator didn’t stop creating when we were born. He had only just started.

Brokenness is painful. Being stretched and stripped back hurts. Facing our weakness is humbling.

But I know it is not without purpose. 

I know it will be always be used for good. Even that which attempts to destroy us can be used and crafted into something more beautiful. 

A masterpiece, like no other, that will reflect the awesomeness of the one who created it. A work of art that will always have purpose and value.

Even in times of pain. 

“For you created my inmost being; you knit me together in my mother’s womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well… How precious to me are your thoughts, God! How vast is the sum of them!” ‭‭- Psalm‬ ‭139:13-17‬ ‭(The Bible)

For we are God’s masterpiece. He has created us anew in Christ Jesus, so we can do the good things he planned for us long ago. -Ephesians 2:10 (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.

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


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.