Breaking Free! From Blame

Have you noticed that when things go wrong in our lives, our human nature wants to lash out. It wants other people to share our pain. To do this we sometimes attempt to place a burden of guilt and blame on others that they are not meant to carry.

We want them to hurt like we do. 

Blame says; “all this is YOUR fault.”
Which is actually rarely true.
Usually we have played our part too. 

Blame is destructive.
It not only destroys us.
It destroys our relationships.
It attempts to destroy others’ lives. 

Blame can be devastating to those who carry it as well as those we try and inflict it on.

Blame wants others to pay for our difficulties.

It makes us bitter, vengeful and angry. We want others to take responsibility for our pain. Hoping that blaming others may lessen our hurt, excuse our own behaviour and enable us to find closure.

But instead blame perpetuates and multiplies our hurt, pain, anger and frustrations.

Blame never brings closure.
It usually changes nothing. It just makes things worse for everyone, our wounds become even more raw and painful.

Blame never brings healing.
It instead re-opens and infects wounds. When we fall over and cut our knee, we have to let it heal. We must let the scab form and allow it to do its work. If you keep pulling off the scab, the wound won’t heal and may well get infected.

Constantly revisiting blame does the same thing. Blame makes healing impossible.

Blame refuses to take any responsibility.
As the fight for blame develops, everyone takes to their corner to defend themselves and in doing so becomes more firmly entrenched in their position. 

‘It is all their fault’. 

We become blinded to our own part, to our own mistakes, and subsequently want to inflict as much pain as we can on the ‘other side.’ 

This makes everything worse and makes reconciliation impossible.

There is only one way to find closure, healing and freedom in the face of others mistakes. 

GRACE!

Grace allows no room for blame. It sees the faults in others and yet chooses to forgive and cover them.

Grace reaches out to people in the midst of their errors and chooses love instead of hate. It brings peace instead of anger and humbles itself to acknowledge its own faults first.

Grace and blame simply cannot co-exist: they are opposites. 

Blame destroys. Grace restores.
Blame attacks. Grace protects.
Blame is selfish. Grace is selfless.
Blame wounds. Grace heals.
Blame pushes forward our ‘rights’.

Grace lays down our ‘rights’. 

Both blame and grace are powerful forces. Blame chains us up. Grace instead unwraps the chains that blame and guilt wrap around us, breaking them, one by one.

This doesn’t mean the journey of grace is always easy. There is often pain in the humility and sacrifice it requires. This is because we have to let go of pride.

Pride refuses to accept we might be wrong. We use pride to protect ourselves from our own, and others, mistakes, insecurities and vulnerabilities.

Grace, on the other hand, often reveals our weakness, yet as we face them we also find healing. It loves us in our brokenness and allows that love to flow out, even to those we once blamed. 

Grace is the only way to freedom. 
 But what do we do when someone has mistreated us and will not take responsibility?

  • Does Grace mean that we don’t pursue justice? 
  • Does it blindly overlook mistreatment? 

No. 
Grace and justice co-exist and even compliment one another. 

It is all about the heart of the person pursuing justice:

  • What are their motives?
  • What do they wish to achieve? 

I personally faced a situation when I was in hospital, a few months ago, that Matt and I believed was a matter of justice and we pursued it on those grounds. I referred to it in my 6 month injury update. 

A senior doctor dealt with a situation very rudely, with no element of understanding of the desperation I was in at that time.

The next day, after he heard that we had made a verbal complaint to the Ward Sister, he tried to rectify the situation through intimidation, rather than any hint of understanding or remorse.

He would not accept that he could have dealt with things differently. Even though I attempted to explain that I would have done things differently myself, if I wasn’t feeling so acutely unwell, in pain and mentally impaired at the time.

Instead he persisted in blaming me, an unwell patient, for his behaviour and response. He would accept no responsibility, whatsoever, and felt completely justified.

At the time it was truly horrible. 

This person I was trusting with my care, at one of my weakest and most vulnerable moments, was choosing arrogance and self preservation rather than compassion, care and understanding.

In these times we have to look at the situation, look at our hearts and decide what we need to do. 

For Matt and I what happened was a justice situation and the behaviour needed to be challenged. Not just because of what was said to me but because of how this behaviour could be perpetuated to others even more vulnerable than I was.

It wasn’t about blame. It was about challenging the inappropriate behaviour of someone who had a duty of care and responsibility.

So we made a formal complaint. 

Even within that process, Matt had to challenge me about my attitude. That was hard, because I found the whole thing quite traumatic. But he was right because even amidst the complaint:

We still needed to guard our hearts.
We still needed to hold onto grace and forgiveness. 
Otherwise, we would continue to be wounded by it.

It takes a lot of wisdom to get the right balance between justice and grace. However, even when we feel the need to pursue justice we can still do that with a heart of grace rather than hate or blame.

Justice is at its most powerful when it is delivered in the context of grace. 

Parenting: Grace and Justice combined.
This combination is very evident in good parenting. If we overlooked all of our kid’s errors and misbehaviour, in the name of love and grace, and never gave any discipline, correction or consequences, they would never learn to take responsibility for their own actions.

They would probably grow up to be selfish and undisciplined adults. 

However, good parents understand that we must deliver this discipline and teach justice from a place of unconditional love and grace.

Then challenge and correction is about love rather than our need to pay back our children for their mistakes. We teach them that there is rightly consequences in the world, but we also teach them that we love them regardless of their behaviour.

That is true grace. 

Justice is about responsibility but we can pursue that without falling into blame. We don’t pursue justice to inflict pain on the other person, or to make us feel better. We instead pursue justice because it is right, protects others and because it gives us all room to change and grow.

Laying down our rights. 
There are times, however, when we may need to lay down our ‘right’ to justice so as to demonstrate grace. Those times take a lot of wisdom. Again it’s about what is going on in our hearts and the hearts of those who have caused pain or wronged us.

Grace is one of the most powerful acts of kindness that there is. It is one of the most generous of gifts, for it will often choose mercy over justice. It chooses to lay down our ‘rights’ to show love to another and to allow them freedom from the guilt that blame attempts to place upon them. 

Grace always has more chance of bringing resolution than blame. This is because as we accept responsibility for our own failures first, it makes a way for reconciliation. 

People can learn from their mistakes and grow together. It then has the potential to open the way for a stronger relationship, which can be built on the firm foundations of humility and trust.

Blame burns bridges.
Grace builds bridges. 

I know I would rather be known as a bridge builder than a bridge burner.

How about you? 

“When you blame others you give up the power to change.” – Douglas Adams

_________________________________________

  • Are there areas of your life where you have been made bitter by blame? 
  • Do these areas bring peace or stress in your life? 
  • Can you recognise things that you need to take responsibility for before challenging someone else’s behaviour? 

This post is part of my ‘Breaking Free!’ series of posts.

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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.

Breaking Free! From Self Pity 

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

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

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

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

I certainly do.

However, 

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

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

Some days it is more of a battle than others.

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

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

We become consumed with ourselves. 

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

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

And it is frustrating! 

There is only so much you can do lying flat! 

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

That is my reality. 

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

This is why I am writing this post. 

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

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

I decided I had to get free from it. 

How did I do that?
Well I am doing it now.
I am writing this post. 

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

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

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

In real time. 

In the exact moment it is happening. 

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

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

Here is what I have learnt.

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

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

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

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

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

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

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

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

How can we rediscover hope in the midst of hopelessness?

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

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

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

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

5. Optimism vs pessimism

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

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

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

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

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

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

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

Be intentional.

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

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

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

However, 

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

That is the way to freedom.

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


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

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

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

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

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 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.