Tag Archives: Suffering

Never, Never, Never Give Up! 

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

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

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

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

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

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

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

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

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

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

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

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

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

So it was cancelled. 

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

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

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

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

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

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

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

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

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

But we WONT let it! 

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

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

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

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

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

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

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

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

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

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

It’s not easy, but it is possible. 

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

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

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

We are not alone and we will ENDURE! 

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

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

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

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

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

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

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

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

Learn
Grow
Inspire
Lead
Live
Teach


Regardless! 

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

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

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

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

But I will overcome. 

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

I will not allow it to take me down! 

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

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


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

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

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

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

 

Finding Peace In The Midst Of The Storm 

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

Do you ever crave true peace? 

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

We often don’t feel peaceful. 

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

Some days we feel like we are drowning in noise. 

Even in the silence. 

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

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

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

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

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

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

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

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

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

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

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

Bad things still happen. 

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

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

And all we can do is survive them. 

But is that all we can do? 

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

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

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

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

But it has. 

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

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

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

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

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

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

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

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

My condition is apparently complex. 

I have learnt that sometimes storms linger for a while. 

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

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

There are two things we can do.

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

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

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

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

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

But when I can say:

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

However, despite it all… 

MY GOD IS ALWAYS GOOD AND ALWAYS FAITHFUL.

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

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

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

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

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

You have to learn how to seek and find HIM. 

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

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


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

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

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

The Beauty Revealed Through Brokenness

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

We can feel exposed and vulnerable. 

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

It’s hard. 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

It is painful but it is not without purpose. 

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

You can feel stretched beyond what you have ever known. 

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

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

It is not easy.  

But! 

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

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

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

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

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

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

For me it’s an ongoing journey of grace. 

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

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

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

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

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

I am not talking about physical beauty. 

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

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

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

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

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

But I know it is not without purpose. 

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

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

Even in times of pain. 

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

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

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

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

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

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

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

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

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

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

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

Over the months I have read about other peoples stories.

Some of them tie into my own experiences. 

Some don’t. 

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

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

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

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

And it is far from easy. 

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

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

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

But my head must be as flat as possible

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

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


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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

But it was still there. 

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

Surely things would just take time. 

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

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

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

Then I relapsed. 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Even amidst the pain. 

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


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

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

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

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

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

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

We Are All Messed Up!

Do you ever wonder:
If other people are like you?
What their ‘real’ lives are like?
Who are they really behind that mask or behind those closed doors?

Do others really struggle like you do?

Over the years I have learnt that people are more similar than we might think. Although our lives and challenges are, in many ways, unique.

We ALL have struggles.

Life brings all of us both joy and pain.

Even those people who might want you to think that they have it all together. The ones who seem like life always goes well for them – the beautiful couple down the road and the perfect family next door.

Yes; they struggle too.

Their challenges will be unique to them and you will often never know they exist.

But I assure you – they are there.

“Be kind, for everyone you meet is fighting a hard battle.” – Plato

from darkness

Over the years I have had the privilege to connect and build relationships with people from all different backgrounds and cultures, both here (in the UK) and abroad.

I love people. I love discovering who they really are and then helping them to reach out towards fulfilling their potential.

One of the things I have learnt is that although the world is full of diversity, which is wonderful, we are ALL actually more similar than we might think. Things are different outwardly for us all and yet inside we often face the same challenges, temptations and battles.

I recently watched an episode of a series called ‘The Tribe’ on Channel 4 about a native family living in rural Ethiopia.

It was fascinating.

Obviously their lives were completely different from ours. They lived in mud huts, kept animals, were self sufficient, had arranged marriages and yet as you watched it and listened to the translation you realised that families face a lot of the same issues.

Fear,
Worry,
Anger,
Insecurity,
Struggles,
Pain,
Rebellion (yes teenagers in rural Ethiopia like to push the boundaries of tradition and etiquette just like Western kids do).

In the episode I saw, one of the teenage girls used to love going to the market in the town to look at & buy new items of clothing. On this one occasion she ran off with some of her family’s money to go and buy colourful bras (even though the traditional dress was that women usually went topless). The argument that took place upon her return was so similar to arguments in many teen homes in the West!

We are ALL more similar than you might think.

FullSizeRender

There is a song by Lecrae, featuring Kari Jobe that really spoke to me following its release a while ago. It is all about the fact that we are ALL broken, messed up and in need of grace.

“Broken pieces actin’ like we ain’t cracked,
But we all messed up and can’t no one escape that…
… Ain’t a soul on the planet
That’s better than another
And we all need grace in the face of each other” – Lecrae

I love this concept.

We are ALL messed up in some way and in need of grace (undeserved kindness, understanding and forgiveness).  

Grasping this stops us believing there is a hierarchy of ‘goodness’. That some of us are just ‘good people’ and some of us simply ‘bad’.

The revelation that people are more similar to you than you think, is actually empowering because it makes us all more equal. It demands that we treat one another with grace rather than judging one another with faulty or hypocritical principles.

When we can accept that we ALL have weakness, vulnerability and struggles; our selfishness is challenged and we can actually become more compassionate.

It changes our pride into humility.

We stop rating ourselves as better or worse than others but instead recognise that we are all ‘messed up’, in some way, and in need of grace.

It levels the playing field.

As I wrote in Surviving the Storm Six months on, I have been faced with my own frailty and weaknesses this year, possibly far more than any other year.

This year has challenged my identity and chipped away at my confidence. Physical weakness can also challenge us mentally and emotionally.

You have less energy for life.

However,

I am learning that I need to embrace this process rather than fight it.

We must allow our own struggles to build in us authenticity and a deeper compassion and grace for others.

It’s a painful process.
It’s a humbling process.
But it’s also a beautiful process if we let it run its course.

In A Year Ago Today: A Journey Through Grief (about my Mum’s death) I wrote:

“Suffering can, if we let it, unite and draw us together in a way that nothing else can. It strips us of our titles and crafted exteriors and touches the heart.”

Suffering causes different things to happen to different people: Some people can become hard and bitter, consumed by their own pain and need. Others learn to direct their pain into compassion and empathy for others.

It is these people that find new purpose within their suffering. They have other people to think about and focus on which helps to heal their own wounds.

It changes our perspective.

Self pity; destroys us. It makes us miserable and angry.
Compassion; fills us with positive passion. It moves us to see others needs and make a difference in their lives.

Feeling compassion, for others, in the midst of our own struggles, brokenness and pain, builds bridges that helps us to identify with all sorts of other people.

from darkness

We are ALL messed up in some way.
We ALL have flaws.
We ALL get stuff wrong.
We ALL make mistakes.

Most of the time we will never know what has happened in someone’s life to make them like they are.

We ALL have a story;
Things that shape us.
Things that break us.
Things that heal us.
Things that strengthen us.

We are ALL more similar than we think and; “We all need grace in the face of each other.”

“It’s incredibly powerful- life changing- to be in a relationship where we can be totally vulnerable without fear, when the person knows the worst about us and still accepts us.” -Samuel Chand

Who could you show grace and compassion to today?

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

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


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

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

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

Then I had an accident.

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

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

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

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

That journey is never easy.

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

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

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

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

Grunge Background

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

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

However,

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

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

Have you ever tried that?

Doing nothing but lying flat in a dark room.

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

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

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

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

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

And it totally floored me.

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

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

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

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

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

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

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

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

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

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

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

I knew that He would carry me.

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

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

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


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


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

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

I still can’t do everything I once did.

And that is hard.

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

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

And it is SO frustrating.

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

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

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

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

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

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

It is manageable.
But it is frustrating.

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

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

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

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

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

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

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

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

But that is not a bad thing.

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

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

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

Paul then wrote in response:

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

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

That is grace.

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

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

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

We are all human.
We all have struggles.

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

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

It is the mystery of God.
The divine paradox.

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

And love and grace are all you need!

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

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

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

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

But it is always there to be found.


How do you find strength in weakness?


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

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’.

A Year Ago Today: A journey through grief and what I have learnt.

A year ago today we sat in an ICU relatives room being told that today was the day that they would turn off my Mum’s life support.

Those few days were a tough and exhausting journey.

In November 2013 we discovered that she had a brain tumour. On January 8th 2014 the doctors operated on it. The operation was complex and took 14 hours. In their eyes it was a success. However, the next 48 hours proved fatal as it emerged that she also had an infection in her pacemaker that caused septicemia, and this combined with the brain surgery overwhelmed her already fragile body.

Those few days opened my eyes.

This was my first experience of ICU. There were critically ill people everywhere. Attached to machines keeping them alive. Many of whom would recover and yet many of whom would not make it or at least only ‘make it’ through to a life dramatically different from their previous one.

Mothers,
Fathers,
Sons,
Daughters,
Sisters,
Brothers,
Friends,
Lovers,
Husbands,
Wives.

And the waiting room was full of people waiting for them. But unlike most waiting, it was often waiting to see whether a loved one would live or die. Waiting to see what that life-changing injury, illness or surgery would do. What it would look like within their family. To say goodbye or to welcome someone back. And even if they came back, their life may be radically changed.

And in that room it was different. A different perspective. An unsaid understanding that people were fighting a battle. That people were riding a storm.

Waiting.
Hoping.
Loving.
Holding on.
Surviving.

When you left that room and went out into the wider hospital or world outside, it was different. Staff at work. People visiting patients. A coming and going of life and normality….for some.

But our experience was far from normal.

There was a part of me thankful to have been there and seen it. To be there and remember & realise that while we go through our ‘normal’ lives, others are facing turmoil, crisis & pain. Sometimes it’s hidden away behind a door titled ICU in the middle of a hospital. Sometimes it’s in a hospice down the road. Sometimes in a house next door. Sometimes it’s hidden in the lives of those you work with, walk past, sit next to on the bus. The shop assistant, the teacher, the security guard, the single mum.
 
People are hurting even though you may not know.

wolken

We lost my Mum a year ago. A year ago I experienced my first real experience of personal grief, along with all the questions and thoughts that go through your mind.

“No one ever told me that grief felt so like fear. I am not afraid, but the sensation is like being afraid.” – C.S. Lewis

For the first few days & even weeks after it happened, I felt an anxiety & what was like a ‘fear’ I hadn’t felt before. The above quote from C.S. Lewis resonated with me. It’s a feeling like anxiety and fear and yet you are not actually afraid. A heaviness. A pain within. A pressure that builds up inside you and you don’t know what to do with it. The thought of going out and seeing people you know can be hard. A ‘fear’ grips you. An anxiety I had not felt before.

And yet…

I chose to push through, to fight, knowing that I couldn’t let those feelings debilitate me. I had to push through, to break through. To discover purpose through pain. To face the questions. To let go of guilt & embrace the way forward. The way out. The way that sees good triumph over evil. The way that does not allow death to destroy.

I have learnt that the best way in life is not denial.
It is to face challenges head on.
Knowing that you will get battered through the journey.
But knowing that taking a battering and coming through stronger is better than allowing yourself to be destroyed inside due to denial.

So that is the journey I have walked. A journey that turns difficult things into challenges that make you stronger and wiser. A journey of self-awareness. A journey that helps you to feel more empathy & compassion for others. And a journey that becomes part of your identity, but that does not define who you become.

Some great words that someone sent me at the time that really helped.

So, one year on, I sit here and I remember the pain. I remember the exhaustion. I remember those days in hospital where my loving God was my only strength & the source of the deep peace I felt throughout. When words from the Bible, music & other inspiration carried me and become an anchor that held me tight.

I remember the relief when my husband, Matt, was able to come to London a day after my Mum died. I remember the drive back to Leicester in the car: utterly spent, physically & emotionally exhausted and yet finally being able to share with my husband the full journey of the last few days.

I remember when I got home. The desperate need to find a photo of my Mum looking healthy, so as to replace the image of someone who hardly looked human lying in that hospital bed. Grotesquely swollen from head to foot. Covered in wires.

I remember the pain, the questions & things to work through in my mind. The tears. The memories. The exhaustion of sleep lost, of pushing through.

But here we are a year on.
Today marks the anniversary of that day.

I have learnt that each person deals with and faces grief differently. There are few rights and wrongs. I have always felt grief was much easier for me than some. Partly, because I lived over 3 hours away from my parents. Our lives were no longer as intermingled as they were as I was growing up. I did not have to look daily at the empty chair. I was not reminded hourly, daily of the person lost. And perhaps because my relationship with her was quite complex anyway and had been for a long time. (Although that brings its own challenges into the grieving process).

And yet I know that what gets me through this, and all the things we face, is an ability to see the positive amidst the negative. A training of the mind to face challenges head on & to learn and grow through them. An inner strength that comes from my deep relationship with God. An innate gratefulness that there are always blessings, hope & joys in life to be found – even amidst the pain of death.

While we were in the ICU waiting room there was a couple waiting for their 20 year old son to wake up. He had been in an accident & was in a coma. They didn’t know if he would wake at all.

They waited,
ate,
slept,
and washed,
in that hospital waiting room.

They had been there about 10 days. They didn’t want to leave in case he woke up and they were not there.

On that Friday afternoon my family sat with my Mum as they turned off her life-support. An agonising time which seems to go on forever as the heart continues to beat for a good few minutes after the breathing has stopped. And the heart rate goes up and down until finally, agonisingly slowly, dropping to zero.

It was horrible.

I tried to put music on my phone and hold it to my ear to drown out the beeps of the heart monitor that lie to you that a person who is gone is still there.

However, as we left the ICU that day for the final time, I saw that couple we hardly knew still waiting for their son to wake. We had shared a connection. We had shared the pain of watching a loved one in the throes of death. And as I looked up at that mother she immediately knew what had happened.

That anxious mother, who did not know if her son would live or die, responded like this:

She held me.

In that significant moment, someone I hardly knew hugged me.
With a touch that I needed.
A touch that understood and felt the pain.

And I whispered to her, with all the strength I could muster “I really do hope things are different for you.” She replied with deep gratitude and briefly shared how touched she was for someone to say that in the midst of their own pain.

I will never know what happened to that family. But I do hope things went well for them.

Never let your pain define you.
Never become so consumed with yourself that you cannot feel another’s pain.
Instead allow your heart to become tender.
Allow yourself to reach out to others amidst your own struggles & vulnerabilities.

Everyone you meet is facing some kind of battle. Some are having to fight harder than others at that moment.

The beauty of humanity is that suffering can, if we let it, unite and draw us together in a way that nothing else can. It strips us of our titles and crafted exteriors and touches the heart. It has the power to break through masks, if we let it, because it touches who we really are.

And we all need that:
Sometimes our hearts need to be exposed.
Our weaknesses need to be seen.

Because it is then we realise that we are ALL just fragile humans. It is then we realise that we are ALL more similar than maybe we thought. It is then we know that we ALL face challenges and we ALL feel pain.

So let’s choose to journey through life with compassion and care. Understanding that we are not dissimilar. We do not need to fight one another. Instead we can support one another and choose to ‘hold’ one another even in the midst of our own pain.


Suffering can, if we let it, unite and draw us together in a way that nothing else can. It strips us of our titles and crafted exteriors and touches the heart.