Tag Archives: CSF Leak

God & Spirituality, Suffering & Grief

Finding Peace In The Midst Of The Storm 

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“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.

Spinal CSF Leak

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

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

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

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

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

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

Over the months I have read about other peoples stories.

Some of them tie into my own experiences. 

Some don’t. 

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

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

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

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

And it is far from easy. 

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

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

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

But my head must be as flat as possible

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

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


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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

But it was still there. 

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

Surely things would just take time. 

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

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

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

Then I relapsed. 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Even amidst the pain. 

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

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

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

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

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

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

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

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

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

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

Perspective, Suffering & Grief

Learning Patience

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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: 
Wait
Wait
Wait
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. 

However, 

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.

Breaking Free

Breaking Free! From Self Pity 

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 “Self-pity is our worst enemy and if we yield to it, we can never do anything wise in this world.” – Helen Keller (1880 – 1968)

(Helen Keller, although both deaf and blind became an author, political activist and lecturer.)

Do you ever have moments when you look at your life, your problems, your struggles and before you know it you feel so rubbish that you can hardly find the energy for anything?

Days or moments when you can only see what is wrong and struggle to see what is right?

I certainly do.

However, 

I am learning not to let these moments control me or to linger in my thoughts for too long. 

I am learning how to break free of them more quickly. 

Some days it is more of a battle than others.

But I have to fight, because I know that self pity will destroy us if we let it. 

When we feel sorry for ourselves we become consumed by our own problems. We cannot break free from the “if only you knew how hard it is for ME,” mentality.

We become consumed with ourselves. 

I am currently writing this post whilst lying flat, as I talked about in Surviving the Storm Eight months on. I have had a challenging few weeks with recurring CSF Leak symptoms which mean I have to lie flat for hours during the day to control them.

Over the past 2/3 weeks I have not been able to stay upright for as long as I did a couple of months ago.

And it is frustrating! 

There is only so much you can do lying flat! 

People have been asking me… ‘How are you doing?’ and I can’t lie. Things are a challenge at the moment.

That is my reality. 

Sometimes they then respond saying ‘that must make you feel down’. Thankfully this is not the case, but some days I do have to fight those feelings. I have to work at keeping the right perspective.

This is why I am writing this post. 

It’s currently 10am and I have been lying down since 9:30am (only having been upright for 2 hours). As I lay down I felt a wave of self pity begin to prod at me. I felt the ‘poor me’ begin to knock at my thoughts.

But as I felt this, as it fought for my attention, pulling me to listen to its complaints.

I decided I had to get free from it. 
How did I do that?
Well I am doing it now.
I am writing this post. 

I am speaking back to those thoughts trying to take control and saying;

Self pity you will not take me down. I refuse to be your victim. I refuse to be anyone’s victim. 

So today I invite you on my journey of dealing with my self pity.

In real time. 

In the exact moment it is happening. 

This is not theory, it is a practical lesson in breaking free from something that can break us – if it’s allowed to.

I don’t always get it right. I still struggle with self pity and selfishness, as we all do, but I am learning ways to stop it in its tracks.

Here is what I have learnt.

1. Remain Thankful 
Being thankful is the number one weapon that we can use to fight self pity.

A thankful heart is not only the greatest virtue, but the parent of all the other virtues. ~Cicero

I thank God for all the good parts of my life, how much better I am than at the beginning of the year & how much I can do. (I can write this post, for instance which I couldn’t do at first). I am thankful it wasn’t and isn’t worse than it is and that I have a great family and support network.

Whether or not you believe in God we can always learn how to become more thankful for life and it’s blessings.

2. Think about other people more
We can only get the focus off ourselves if we move it elsewhere. If we allow our eyes to be opened to the problems and needs of others it soon puts our problems into perspective as I wrote about last week.

Our mountain shrinks in size and becomes more of a hill in light of what some people face.

I have read of many people with CSF leaks who are in a much worse place than me. Compared to others my story has not been so bad. 

3. Hold onto hope. 
When hope is gone we feel like we have nothing to live for.
This is why depression is so destructive, because it strips us of our hope and of our energy for life. (I am so thankful to have not reached this desperation myself, but I have stood along side enough people struggling with it to understand the damage it causes and how difficult it is to get free from). 

How can we rediscover hope in the midst of hopelessness?

We have to battle through all the darkness & negativity to find that one beam of light. To find those encouraging words and thoughts and hold onto them.

We have to keep pressing through and believing we can come out the other side.

There is always hope to be found if we will seek and find it.

4. Changing the what ifs 
We have to choose to do away with the negative ‘what if’s’ about the future and focus on the positive ‘what if’s’. This doesn’t mean pretending or avoiding reality. We cannot live in denial. It just means choosing to see more of the positives rather than being blinded and consumed by the negatives that we cannot change.

5. Optimism vs pessimism

“Optimism is the faith that leads to achievement. Nothing can be done without hope and confidence.” – Helen Keller”

We can all learn to think more optimistically. Even if we are a ‘glass half empty’ person – we can change.

I know from my own life, I have moved from a more pessimistic to a more optimistic outlook over the years and it partly comes through retraining the way I think.

We don’t have to stay the way we are, we can learn practical disciplines which help change our thought processes.

6. Feed yourself with encouraging thoughts and words and get around encouraging people. 
For instance when you feel self pity knock at your door, whatever you do don’t sit dwelling on those thoughts.

Be careful about listening to sad songs or watching sad films that perpetuate the negative feelings.
Instead, you need to be encouraged. You need to find people and things that uplift you.

I keep a store of great bible verses and quotes in my phone for this purpose. So I can always find words to counteract negative feelings when they come. I also then have words for others when they need them.

Be intentional.

Store up encouragement for that rainy day. I really do believe that a few simple words can change your outlook for the whole day.

Self pity is always lurking round the corner in our lives. It calls us to listen to its complaints and excuses. But ultimately, it only leads to despair and destruction in our own lives and relationships with others. It amplifies our selfishness and drags us into dark ways of thinking.

We all need to take care of ourselves. We need to be real about the challenges we face. We need to ask for help when we need it.

However, 

It is possible to face the reality in front of us without letting it consume us. We can say to ourselves, ‘yes this is hard, it’s painful, it’s a struggle… BUT!!!! … Despite it all I still have so much to be thankful for’

That is the way to freedom.

“Self-pity is our worst enemy and if we yield to it, we can never do anything wise in this world.” Helen Keller

What practical things do you do to deal with self pity? It would be great to share your ideas with others. Please do comment below. 

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.

Spinal CSF Leak

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

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

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

This is my update.

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

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

We all face stormy seasons in our lives.

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

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

We then hope what we learn might help others too.

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

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

wolken

So 8 months on.
Where am I now?

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

But that is not the truth.

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

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

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

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

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

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

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

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

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

Since then there has been a general gradual improvement.

However,

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

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

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

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

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

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

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

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

Similar sensation; different place.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Perspective is vital.

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

As a popular saying goes:

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

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

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

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

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

But there is a way forward:

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

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

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

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

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

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

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

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

 

Breaking Free

Breaking Free!

8 Comments

Do you ever feel like you want to break free?

Break free from something … even though you cannot necessarily pinpoint what it is?
Do you feel like you want to break out and discover more freedom?
Do you desire change, even though you also fear it?

What does it mean to break free?
What does freedom really look like?

There are so many things that can trap us. That keep us bound up physically, emotionally, spiritually & mentally. Things that take control of our lives and stop us being the people we desire to be and doing what we desire to do.

What do you desire to break free from?
What is keeping you bound up?

Maybe it’s:
Fear
Worry
Sickness
Pain
Other people
A relationship
Others opinions
Comparison
Jealousy
A job
Family
Your thoughts
Depression
Anxiety
Addiction
Anger
Hate
Bitterness
Grief

The list goes on…..

Each of us know that there are things that trap and hold us back, but we can’t always see how to break free.

I believe the desire for freedom is something that is inbuilt within us.
To feel free & liberated is a deep human desire.

But what does freedom actually mean and why can we often feel trapped and bound?

At the start of 2015 the brain and neck injury I sustained was debilitating. My life became so restricted as I spent 22-23 hours a day lying down and could do very little for about 3 months (followed by another month of recovery). During that time I felt trapped physically within a body that would not function as it should. I desired my body and mind to work properly, but they wouldn’t and I felt trapped by it. I desired freedom from the injury and the damage it had caused, but each day things hardly got better and they actually began to get worse.

I couldn’t shake it off.
It wouldn’t go away.
If I fought it – it got worse.
I couldn’t break free.

However.

Even though I could not break free from the physical symptoms, I decided, from the start, that the injury couldn’t and shouldn’t control everything.

I decided that I could break free and choose freedom in other areas. I was adamant that the injury wouldn’t take my psychological health as well as my physical health.

Now this was a challenge because the brain injury affected my cognitive processing. At first I couldn’t really do anything. I couldn’t:
Read.
Listen to music.
Watch TV.
Look at or use screens.
Walk outside without support.
Sit up or stand for more than about 15 mins at a time.
Have long conversations.

However, I knew I had to take back what I could control and choose to stay positive, to stay thankful, to not let fear and worry control me.

Even when I could not break free from the physical symptoms I chose to fight for freedom spiritually, physiologically and mentally.

Breaking free copy

Some days that was easier than others.

Even when we face setbacks and discouragements, when things seem to be getting worse rather than better:

We can still fight for freedom.

We cannot control everything in our lives but we can choose to take control of our thoughts and attitudes.

The times I felt most trapped by my injury and illness were the times I allowed my mind to dwell for too long on the negatives.

On the ‘what ifs’.
On the frustrations.
On the horrible symptoms.
On the restrictions.
On how I felt.

It was then that the battle would set in, trying to drag me into an unhealthy mental state. To pull me down into negative thinking and attack my physiological stability.

In those moments I had to fight to break free. To remember all the things I could be thankful for. To choose to believe that things would get better. To focus on the positives and to push through to the inner peace that I knew was deep within my soul.

I can remember as my husband drove me to A&E for the first time, 7 days after my initial injury, I was in a bad way. I felt so dizzy & out of it. Disconnected from the world. Keeping my eyes closed because my brain couldn’t deal with the lights and movement of the car. I could hardly talk, I couldn’t walk without help or support. And on that journey I just kept saying to my husband Matt – “everything’s fine isn’t it. It’s all OK.” And he would just gently, yet confidently, say, “yes it will be fine, everything will be OK.”

I am so thankful that Matt and I share the same outlook on life. That even when things get tough we dig deep to find that inner peace. To hear the gentle calming voice within saying – ‘it will all be fine, you are OK, don’t be scared’.

Now that was day 7 after my injury. I wasn’t, of course, OK and was diagnosed with Post Concussion Syndrome, but it wasn’t life threatening and that’s what the being ‘OK’ was about. However, by week 7 things had got worse; we took our 3rd trip to A&E and I was finally admitted and we got some answers as I was diagnosed with a Cerebral Spinal Fluid (CFS) leak. I then had to again fight to stay positive, to be patient, to trust I would recover, to choose everyday to keep on believing, trusting & pushing through and taking hold of that peace & hope within.

Even when I felt at my weakest physically, emotionally and mentally, when it felt like I was getting battered from all sorts of directions, in all sorts of ways, I had to choose to stay hopeful. To find that strength amidst weakness and to hold on to the way forward.

Breaking free is a mindset.
It is birthed in the heart and received in the mind.
You have to be determined to take hold of it.
You have to choose it.
You have to believe it.

There have been many seasons in my life as well as many daily battles when I have to push to ‘break free’.

My last two blog posts about insecurity, due to comparison and others opinions, talk about some of these daily battles.

We all have them and some of our battles will be similar. And yet because we are all individuals, many of our battles will be unique to our circumstances and personalities.

So to explore this subject of ‘breaking free’ I am going to write a series of blog posts about this subject.

As with all of my posts I will try and make them as ‘real’ as possible. Sharing stories from my own life and things that have helped me.

I am certainly not there yet. I still often have to fight to break free from the things that come against me. I still have days and moments where I feel more trapped, than free, especially in my thoughts.

But I am on the journey.
I have not arrived.
But I have left.
I have seen freedom.
I have tasted of its liberation, peace and joy.
I have lived it.
I have experienced it.

But I know there is more.
I know I can push in further still.
To grasp hold of my freedom and not let go.

And I will not give up pursuing it until I have experienced it in every area of my life and thoughts. That is a life time goal. Unattainable; perhaps, but…

What a vision for life – total freedom! For you and for me.

It’s available. We just have to reach out and take hold of it. We are not built to feel trapped & bound.

We are built to be free! 

“As I walked out the door toward the gate that would lead to my freedom, I knew if I didn’t leave my bitterness and hatred behind, I’d still be in prison.” – Nelson Mandela

Breaking free quote copy

Spinal CSF Leak, Suffering & Grief

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

26 Comments

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

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

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

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

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

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

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

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

Grunge Background

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

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

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

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

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

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

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

Grunge Background

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

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

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

So it’s been a season of learning.

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

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

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

It’s all about having the right perspective.

It’s not easy.

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

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

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

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

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

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

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

It’s all about perspective!

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

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

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

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

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

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

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

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

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

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

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