Tag Archives: weakness

The Power Hidden In Vulnerability. 

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

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

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

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

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

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

A better term is torture! 

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

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

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

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

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

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

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

I have reached a new level of weakness. 

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

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

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

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

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

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

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

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

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

It’s been a tough year. 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

We couldn’t cope anymore. 

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

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

Talk about vulnerability and weakness. 

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

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

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

BUT

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

When there is no where left to hide.

You are just you. 

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

Yet loved, looked after and cared for. 

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

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

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

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

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

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

To be seen in weakness is to be truly seen.

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

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

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

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

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

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

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

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

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

Learning Patience

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

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

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

When better to write a post on patience! 

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

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

But often instead you have to: 
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.

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

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

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

This is my update.

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

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

We all face stormy seasons in our lives.

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

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

We then hope what we learn might help others too.

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

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

wolken

So 8 months on.
Where am I now?

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

But that is not the truth.

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

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

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

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

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

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

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

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

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

Since then there has been a general gradual improvement.

However,

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

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

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

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

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

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

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

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

Similar sensation; different place.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Perspective is vital.

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

As a popular saying goes:

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

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

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

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

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

But there is a way forward:

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


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

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

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

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

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


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.