Tag Archives: Concussion

Living With a Spinal CSF Leak.

“There is no greater agony than bearing an untold story inside of you.” – Maya Angelou

I started this blog at the start of January 2015. For a while I had wanted to write. But in all honesty I was scared.

“What if I write and nobody wants to read it?”

I soon learnt that writing isn’t just dependent on others reading it. It’s a great form of self expression in its own right. It’s the attempt the find the right words to tell our own stories about our lives.

One of the first momentous, yet deeply personal stories that I shared was the first anniversary of my Mums death in a post called ‘A Journey Through Grief and What I Have Learnt.’ I had felt that in telling my own unique story, people might just connect and maybe they could relate as they struggled through their own story of grief.

Little did I know that the same week I started this blog and wrote the above piece, would be another life altering week for me.

That was the week that I sustained a brain/ spinal injury I am still battling now –

21 months later.

That day I was painting and needed to reach high up near the ceiling. So I used a relatively small step ladder to stand on, but it was resting in a place that wasn’t completely stable. I had already used it that way for hours and felt confident it was ‘stable enough.’

But my confidence was misplaced.

I took a seemingly small risk, the type that we all take everyday. But on this particular day my risk taking didn’t pay off. It was that day I had an accident. It was that moment where it felt like so much went wrong.

I have been living with the consequences of that decision ever since.

In one horrible moment the whole ladder had toppled over and took my feet from under me with it. I fell onto my back and hit the back of my head….

It’s OK!
I am fine!
A bit dazed!
A bit bruised!
No real damage done!

Or so I thought!!

So I finished that painting. Exhausted & aching all over, but obviously to be expected after painting all day and having a few bruises from the fall. But within 48 hours it became obvious,


Two days later I was diagnosed with a concussion.

“You should be better by next week.” they told me.  But I wasn’t….It got WORSE!!
So we went down to A&E.

“I am sorry Mrs Hill you have Post Concussion Syndrome. You are looking at about an 8 week recovery time.” they said.

No surely, not me.
Give it four weeks.
It can’t be that bad.
That is such a long time!!! (I confidently, yet naively thought!)
I’m sure I can bounce back like any other time I have been ill for a few days.

Eight weeks later of being pretty much bed bound, in a dark and quiet room, and things still getting worse.

We head down to A&E for the third time since my fall.

I was finally admitted that time because I was so unwell, in severe pain and vomiting after being given morphine which didn’t touch the pain, only made me feel even more ill. I was finally seen by a Neurologist the next day and she moved me to their ward to look for evidence to support their initial diagnosis of low pressure headaches caused by a spinal CSF leak.

I am not going to list all my symptoms because I have done that all before. But what I will say here is that I am so very, very grateful to a handful of people who in the midst of their own pain and struggles decided to help others like me.

I have to tell you about the wonderful team at www.csfleak.info who helped me to understand more about my injury and helped me to realise that the fact I ONLY ever felt remotely well LYING FLAT IN BED for those two months, was not due to post-concussion syndrome after all,

It was probably due to a  SPINAL CSF (Cerebrospinal Fluid) LEAK!

This meant that somehow the accident had caused a small tear in the membrane in the centre of my spine (the dura) that holds in your spinal fluid. This means that my spinal fluid leaks out and is absorbed my body.

So when I am upright sitting or standing, due to gravity, my brain drops in my skull, because it lacks enough fluid to hold it in place.

Twenty One months after my fall.

I am still not better!

I have had some ups and downs along the way. Bad months in 2015 of being almost fully bed-bound. And other months after epidural blood patches (I have had 3) of being mostly upright.

But since that fall I have never had one single day of being…


Such is the journey to full healing with this unusual and often under-diagnosed condition. Many people do get diagnosed, receive treatment, get well quickly, and never look back.

But many others face constant battles, discouragements, set backs and difficulties throughout their journey of being diagnosed and treated. Often a lack of knowledge by the medical profession makes getting fully better hard for many.

stone wallRecently, I have become so acutely aware how little many doctors, and the general public, know about spinal CSF leaks. I have heard so many stories of people struggling to get a diagnosis and, even when they do, facing many barriers to treatment.

There are many hospitals that really don’t know what to do with ‘these rare patients’ and this often makes delays in treatment an unfortunate reality for many.

I am so grateful for an amazingly supportive and well informed group of CSF leak sufferers who form an online community through the ingenious invention of Facebook groups. Many of us cannot imagine how we would have faced this journey without one another and I honestly think that some people in those UK and US based groups would not be alive today without that wonderful resource. Despair and suicidal thoughts are very prevalent within this group of patients.

Having someone tell you “I get it” whilst you both spend yet another day staring at the ceiling, flat in bed, can mean everything to someone really struggling. Even when that other person is half way across the country or even the world.

We face the daily struggles together!

It can be a lonely and difficult road battling a chronic illness. That road sometimes feels impossible when you slowly begin to realise how little knowledge a lot of doctors have about your condition.

I recently watched a very moving video, that is on the wonderful US spinal CSF leaks charity website. www.spinalcsfleak.org/resources/patient-stories/ About a lady who got a spinal fluid leak from a very badly placed epidural for the birth of her second child. She got two dural tears from the needle which caused spinal fluid to leak from her spine.

It took her 2 1/2 years to recover (she had a new born and 4 year old at that time) and she had to have 11 epidural blood patches (where they inject your own blood into the epidural space in your spine) and two surgeries to get better.

But what struck me the most was that even though everyone knew the area of her spine the leak would have been in (which is half the battle with traumatic (or spontaneous) leaks like mine) time and time again doctors refused to listen and often implied that there is no way she could be leaking CSF, and perhaps it was instead, ‘all in her head’ or something she would ‘just have to live with’.

I cried so much watching it because myself and many other leakers have faced similar battles to hers.

I find it heart breaking when people are suffering and needing help and support. And yet due to a lack of knowledge and understanding by the medical profession AND the general public, people are often told things like;

‘We have got nothing left to offer you,’
‘Try your best to get on with your life’
‘Perhaps you should try and get out more.’

Which is just a slap in the face when you are literally stuck lying flat in bed!

And yet, it doesn’t need to be that way!

There has been so much research done about spinal CSF leaks already. There IS knowledge out there. There are specialists who are leading the way, publishing medical papers and providing hope that many people CAN fully recover and perhaps don’t have to just learn to live with it after all.

Peoples minds need to be opened.

Medical professionals need to know that there is more information out there than they might realise. That there are a whole range of diverse symptoms. That people can still be leaking and debilitated, yet still function (well sort of) upright most of day. That there are many different kinds of treatments available and things that can be done to help.

  • Recently I have been thinking; how I can spread awareness?
  • How can I do my bit to help make the way clearer for those patients coming after me?
  • What skills can I offer the cause that might make a difference for both me and others?

One thing I have chosen to do is write. I can use my words to draw attention to this condition. I can tell my story in the hope it eventually reaches the people who need to hear it.

“Well, everybody’s got a story to tell and everybody’s got a wound to be healed.” Plumb

So today that’s what I want to do. I want to welcome you in to my world. I want to share with you a snap shot of what it is like living with a chronic CSF leak. So that you might have some more understanding yourself.

These days I am so very thankful that I get more hours upright than I used to. It really does make it that much easier to deal with. It helps me to feel more a part of the world around me and connect better with my kids. But it is still very very hard and debilitating to live like this.

stone wallHere is a typical start to my day….

I got up about 7:30am this morning. Lying in bed in the mornings I can actually feel pretty normal. But that feeling never lasts for long!

I get up, shower, get dressed and have breakfast, including a cup of tea and 2 pro plus caffeine tablets (because I can’t stand coffee!!)  – which can help to give me a bit more up time (although I often find it can be an artificial type boost feeling). During this time I already feel the neck stiffness and occipital (bottom back of the head) pain beginning to build up, but it’s manageable and relatively mild.

I drive part way and then walk my youngest to school. Chat to the other parents/ carers, go back to the car. Then this morning I decided I would pop to the shops.

My head is getting worse bit by bit, the pressure is building, the pain in my neck/ occipital region is increasing and my head is beginning to feel more full and a little cloudy.

I go into the supermarket – only to get a few things so it’s not too heavy. I don’t use trolleys, I don’t use a basket. I don’t take a handbag – only my purse – so that I can get as many things as possible and carry them without making my symptoms much worse.

So depending on what I have that might be 4-8 lightish items that I can hold in my hands/ arms without dropping them. If I do drop one of them (like the other day), I have to leave it or ask a shop keeper to pick it up for me. (Because bending down might make my leak, and will certainly make my symptoms, worse. At home I use a grabbing stick like the one below).


The nausea is setting in.

I pay for them on the self service check-out which is at an awkward angle so you have to bend a little to put them on the counter once scanned.

This increases my symptoms.

I bag them up and pay and by this point – just carrying the weight of those few things is making the nausea worse, so I start gagging in the lift to the car park, feeling like I want to vomit (although I don’t think I am ever fully sick).

Thankfully there is no one else in the lift with me!

I drive the short distance home – put the things away. Talk to my husband while he’s making a cup of tea (he is working from home today). During our conversation my head and neck is getting worse (I feel like someone has whacked me round the back of my head with a baseball bat!!) and I start gagging again uncontrollably – but thankfully I don’t actually vomit.

So my husband says, “you’d better go and lie down.”

I walk up the stairs and can feel my legs beginning to get very weak, I have to think about the steps I am taking, willing my legs to keep moving. The cloud in my head thickens. That feeling of not being able to cope with the intensity in my head floods over me! 

It’s 9:30am – I have been up two hours and can no longer function upright!!

I am now lying down flat in bed – feeling a lot better and writing this. I will stay here for probably an hour or two before getting up again to do some more jobs at home for maybe half an hour to an hour before the same thing happens and I have to lie down flat again.

That’s how it goes throughout the day every day although later on in the day the up times are often less and the down times can get longer.

If you saw me at the school at 8:30am, even though I had symptoms, you would think I looked fine, chatting to people (which is great because some days I don’t get to see many people).

So this is me on a good day – last year during my worst times the above would all happen with my symptoms within about 10mins of being upright.

I couldn’t even have a shower.

I would have a shallow bath once a week which I would have to lie completely flat in. As soon as I got out I would have lie on the bed with a towel round me, with my wet hair on a towel. It would take at least 1/2 hour to 1 hour before I might manage to be upright enough to put some clothes on and dry my hair a bit with the hairdryer. Or often my husband would help try and dry it whilst I lay flat.

When I was in hospital, a year ago, waiting and battling for more treatment (a second epidural blood patch) – I was in a bad way. I would spend all day lying in a head tilted down bed to alleviate symptoms and keep my brain in the place it should be. I could only manage about 5-10 mins upright at a time which makes things very hard.

We were facing lots of barriers and delays at that time (which I write about here), because the anaesthetists didn’t want to blood patch me a second time (after 5 much better months following the first) they instead wanted me to try an occipital nerve block done by the pain management team. (I did have the nerve block, it didn’t work at all, but it did leave my head, neck and hair covered in the sterile cleaning stuff.) Following that it took me two whole days to find the strength to get my husband to take me into the shower in the hospital bathroom so that he could help me wash all the chemicals from my hair and neck and help me get changed. He then dried it with a hair dryer whilst I lay flat again. (That would pretty much do me in for the whole day!!)

It’s an utterly debilitating condition. It’s not good for anyone’s physical and mental health to have to lie flat in bed all day. And yet some people are left that way, long term, because doctors don’t know what to do with them. They don’t understand how to treat them.

They do not seem to realise how impossible it is to live like that!

People are just not aware that many spinal CSF leak patients end up feeling suicidal (as I did at Christmas and write about here) because of the physical and psychological toll of the condition. Which is often exacerbated by the battles to find doctors who understand the condition, show compassion and actually do their best to help you.

There can still be an ‘old school’ mentality at large in the medical profession, even following correct diagnosis, of trying one epidural blood patch (and sometimes not even one) but if it fails to fully get you well, then they recommend that they should just try to help you manage the pain.

‘Manage the pain?’

I don’t have a sore leg, or a mild headache that goes away with some pills or a even a worse headache and stiff neck that is solved through a nerve block.

My brain drops in my skull when I am upright, wreaking all sorts of havoc in my head and body until I literally can’t physically or mentally cope. You can’t just ‘manage’ that kind of pain. And actually I wouldn’t always describe it as ‘pain’ it doesn’t do it justice. It is an intensity that can actually only be described as a sensation that is ‘beyond pain.’

(And just to add here that no painkiller I have had (Including IV morphine) has ever touched it)!


Things ARE changing, patients are speaking out and coming together as a force to challenge conventional thinking about CSF leaks. And thankfully, little by little there are more wonderful doctors who are meeting enough well informed leak patients to see how great their suffering is and are slowly beginning to offer them new opportunities for diagnosis and treatment.

When someone with a leak meets a doctor who understands, or at least tries to understand, it’s truly a beautiful thing. It honestly means so very much to us.

Those doctors will never be forgotten.

We don’t expect miracle workers. We know we may not be easily fixable. But to meet someone with a willingness to try, an ear to listen, a humility to learn and a compassionate heart can make all the difference to someone on such a difficult road.

stone wall

In February this year (2016) a video was posted on You Tube that is doing so much to help change people’s minds and hearts about spinal CSF leaks. In the video Professor Ian Carroll from Stanford University Hospital in the U.S. gives a passionate lecture in which he is trying to enlist the help of doctors and medical professionals to help find and treat those suffering from spinal CSF leaks.

Through this video Dr Carroll has become our spokesperson, bravely, boldly & passionately challenging conventional thinking in the medical profession at large. And joining others in the quest to change current practice and stop people suffering unnecessarily from a mainly treatable condition.

I know for me, and many other longer term suffers, Dr Carroll’s video on YouTube is a breath of fresh air that reminds us that we are not going completely mad. So many patients have taken great hope through the impact it, and other recent information, is slowly having on awareness, diagnosis & treatment of spinal CSF leaks.

I am so very grateful for this wonderful resource from a doctor who is wanting to reach both doctors AND patients. I have gratefully been able to share this resource with some of the many doctors who have cared for me over the last 21 months. Some who have gone to great lengths to understand the condition more and do their best to support and treat me.

It is always a special moment when you meet a doctor who does watch the video or reads though the websites. People’s hearts and minds CAN be changed and it is wonderful when you see that happening.

Change does not often happen instantly. We are not all going to wake up tomorrow in a world where every person with a spinal fluid leak is going to get properly diagnosed, treated and fully recover. These conditions are complex and it takes time for understanding, research and practice to filter through.

But we can all play our part!

So today I want to ask sufferers and their families to think about;

  • How could you speak up and tell your story?
  • How can you be part of raising awareness too?

We might not all be able to write blogs, create websites, volunteer for the charities, fund raise or spread the word on the street. But perhaps we could post on social media, share a link, wear a t-shirt, or tell something of our own story.

Or perhaps you could respectfully share with a medical professional a medical paper on leaks, tell them about the UK and US CSF leak charity websites, or send them a link to Dr Carroll’s video.

You never know, they might just take a look especially if you approach it well.

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

Change will only come;
little by little,
step by step,
patient by patient,
doctor by doctor,
hospital by hospital.

By individuals and groups choosing to raise awareness and helping to challenge and transform conventional perspectives and opinions.

Perhaps we can all work together to enable patient and doctor to compassionately help one another to understand this debilitating yet treatable condition. So that even if we have had a tough and difficult journey ourselves, we can seek to build bridges with others that can open lines of communication. That might just change people’s hearts and minds for the future.

That way, we are building a legacy for the future. We are making the road that bit clearer for those following behind.

Mindful of the fact that they may never fully know the difficulty, struggles, sacrifices and battles of those who went before.

“Do not go where the path may lead, go instead where there is no path and leave a trail.” -Ralph Waldo Emerson

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

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

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

Here is the link again to Dr Carroll’s video.


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.


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.


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.

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:
and thrived.

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


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.

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. 

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:

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… 


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.

Learning Patience

Patience is not the ability to wait but the ability to keep a good attitude whilst waiting. – Joyce Meyer

There is nothing like hospitals to teach you the virtues of being patient.

I am writing this, in hospital, after a relapse. Neurologists think I have a recurring CSF leak which perhaps exacerbates post traumatic migrane symptoms from my original concussion.

When better to write a post on patience! 

Hospitals require patience.
Patients need hospitals
Learning to be a patient patient is hard.

Being unwell makes being patient so much harder. You go to hospital because you are unwell. Being unwell is unpleasant. Your ability to function normally is challenged. You just want to get fixed, get better and go home.

But often instead you have to: 
Then wait a bit more! 

For everything!

The wonderful medical staff are so busy with all the patients trying to be patient whilst ill. Which can’t be easy.

So everything takes a while. 

When my husband brought me to A&E, a couple of days ago, I was having one of my ‘drunk like’ episodes. Basically amidst all the head pressure, dizziness and general head & neck pain, my head also goes a bit funny and I act rather tipsy. (A symptom that has appeared occasionally when things have got bad. Which wasn’t helped by waiting sitting upright for so long – which is not helpful if you are leaking Cerebral Spinal Fluid).

All this meant I waited in the A&E assessment waiting room a bit like a small unwell child.

Speaking loudly,
Reading all the signs out loud,
And asking my husband every five mins:

When is it my go?”. 

I kid you not – that is literally how it was!

It’s both half amusing and half troubling for Matt and I (and probably exceedingly annoying for everyone who probably assumed I had vodka in the water bottle I constantly swigged).  

Why is waiting so hard? 

  • We are not used to it. 
  • It feels like a waste of time. 
  • It can make us feel anxious or frustrated. 
  • We want quick fixes and quick answers. 
  • We are too used to our fast paced world. 


Perhaps, if we realised there are lessons to be learned from waiting, we would embrace times of waiting more easily. Maybe then we would not allow ourselves to get so frazzled.

I am speaking to myself as much as anyone else as I write this. There is nothing like a lesson learned in real time, as I wrote in my last post Breaking Free! From Self Pity. And there is nothing like being ‘stuck’ in hospital to refine your waiting skills.

It’s a challenge to say the least. 

But we must try to find positives in hard times or we will become consumed by the difficulties. Being frustrated, annoyed and impatient usually does nothing to help the process and certainly doesn’t help get you better.

I do know how hard this is though, especially when you feel desperately ill. 

My first night after being admitted was tough. I wasn’t in the best way (although not ‘as bad’ once I actually got to lie down flat of course). I was on a medical ward because they firstly wanted to rule out a brain infection, such as meningitis, so I had lots of doctors coming to check me out.

During the night I somehow laid on the cannula they had put in my arm and pulled it out. Once I realised, and had called the nurse, I looked down and saw the bed and me covered in a pool of blood, from it leaking.

The nurse came, sorted out the cannula and started changing my bed and I got myself to the loo to try and change. (which was a challenge in itself because my walking and balance were affected by my general CSF leak/ post concussion heady symptoms). But in true Becky Hill style I was intent on doing it myself and thought I felt OK enough to manage.

How wrong I was! 

I started to try and clean myself up and during the process pretty much fainted, but seeing as I was by then half undressed and smeared in blood, whilst trying to wash the blood out of my clothes, I thought I would try again, not wanting the nurses to have to rescue me.

Unfortunately, that was wishful thinking and in almost passing out again, I managed to unlock the door and ring the emergency buzzer.

I was lying on that hospital toilet floor, feeling extreamly weak, desperately vulnerable and overwhelmingly nauseous. I then had to wait for someone to hear the buzzer and come.

I could hardly move, hardly talk and certainly couldn’t look after myself in that moment. 

But I still had to wait. 

It probably wasn’t even that long before the nurse came. But it felt like forever. Listening to that buzzer, hoping someone would come.

Trust me I know how hard it is to wait when you are desperate. 

It turned out my blood pressure was very low and the wonderful nurses put a lovely hospital gown round me and wheeled me back to bed, the doctors came and they had to give me IV fluids to help sort me out.

Waiting can be so hard, especially when we are feeling weak, vulnerable and desperate. 

It’s also hard to get waiting right in those moments. (Hopefully others can then empathise more with our impatience in those moments). 

In general though, we can all learn to wait more patiently in both easy and harder times. Here are some of the ways the process of waiting can help us.

1. Waiting teaches us how to be patient. 

Well that’s obvious, isn’t it? 

But it’s not always the case. Waiting is often enforced upon us and hence it is something we ALL complain and get frustrated about.

Who likes enforced waiting? It’s just down right annoying isn’t it? 

Yes it is! However, being patient brings peace and a lot less stress during difficult times. Stress just produces tension in our bodies and minds and usually just makes the whole ‘waiting’ experience more traumatic than it needs to be.

We may still need to challenge the process and find out if all the waiting is really necessary. But we can do that from a place of peace and understanding rather than anger and frustration.

2. Waiting can help our empathy of others’ difficulties. 

When I have to wait, especially in a hospital, it’s easy to start to look around and try to work out how important my case is compared to others.

If we are not careful the selfish tendency we all have kicks in and we are blinded by our own problems and cannot even begin to see the difficulties others face.

‘Me, me, what about me!’

Patience instead allows us to show more empathy to others around us and see the difficulties they face as well.

3. Waiting can be an opportunity to rest.

We are often not very good at resting when it also involves waiting. I know that I am certainly not! We complain about our busyness and then can’t cope with resting either.

This is because enforced rest is often neither convenient or welcomed – because we can’t choose it or use it how we want.

It feels like a colossal inconvenience and a waste of our precious time. Which may well be the case.

However, rest is a good thing when used correctly. Sometimes it is only thorough rest that complete healing comes. But only if we let go of our anxiety in the process and attempt to fill our thoughts with better things.

4. Waiting increase our endurance. 

“We can rejoice, too, when we run into problems and trials, for we know that they help us develop endurance. And endurance develops strength of character…” (Romans 5:3-4 The Bible)

Endurance is a great virtue. Without endurance we won’t get very far in life. It is endurance that spurs us to keep on keeping on, even when the going gets really tough.

It enables us to push through difficulties and come out stronger the other side. Without endurance we become floored by every trial, however small. We give up trying, aiming or working towards better things.

Learning how to ‘wait’ better can do a deep work in us that enables us to face the challenges life brings and overcome them as best we can.

Patience brings us peace amidst the storm because we stop allowing the storm to control our feelings and actions.

In this way, we not only ‘survive the storm’ but we can ‘thrive in the storm,’ because ultimately that which came and brought chaos in our lives, actually produces more peace, contentment and thankfulness.

Maybe if we see things differently we will no longer fight ‘waiting’ so much. Maybe we will instead find a way to embrace it, with wisdom, allowing it to do the work in us it can do;

If we will just let it. 

“Without patience, we will learn less in life. We will see less. We will feel less. We will hear less.” – Mother Teresa

Next time you have to wait. Have a look around you and perhaps ask yourself:

What can I learn, see, hear and feel from this process?  

How can I contribute to a peaceful atmosphere amidst the wait and even in challenging it? 

To read more about my journey since my concussion and CSF Leak please see my first post here.

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.

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.


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.


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.

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.

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.


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.
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. 

You can read the first post about my injury here. I have also since added a new 8 month recovery post. I then go on to write about my ongoing story of relapse at 9 months and on to rebounding into High Pressure CSF at the end of the year all these posts can be viewed under the CSF Leak and Concussion menu choice at the top of the screen. 

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 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, reducing pressure and causing your brain to drop in your skull. Mine was possibly in my neck – although this was never confirmed on MRI scans).

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
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 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:
Exceedingly frustrating

When you can feel:
Very unwell
Mentally impaired

When the new season requires new:

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.

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.

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 ongoing 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