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.
Brain injuries like concussion, post concussion and CSF leaks are tough. They are difficult to fully diagnose and yet so debilitating. Your brain is like mission control to your whole body and when your brain gets rattled or strained so many things get out of sync.
I am one of the blessed people whose injury, although serious, was comparatively mild. Severe brain injuries are life threatening and permanently life transforming. I am so very thankful that it was no worse.
It was and still is a storm in my life. It was debilitating. It changed my life for a time. It is still improving but it has not yet fully passed.
Four or five months ago, at its worst, the only way to ease the symptoms was to lie flat and do nothing. For hours, days and weeks on end.
Have you ever tried that?
Doing nothing but lying flat in a dark room.
It can be torture. Especially when you are dizzy and in pain.
I was then finally admitted to hospital 8 weeks after the initial injury. Although tough in itself, I was thankful for this, because we got some answers and I was finally diagnosed with a CSF leak (cerebral spinal fluid leak).
Many people will not know that after a few days in hospital I faced one of the darkest days in my life.
Some events took place that probably during an average day I would have coped with and managed mentally and emotionally a lot better than I did.
But on that day a pattern of events unfolded that involved a senior hospital staff member with an exceptionally bad attitude.
And it totally floored me.
I have never felt so utterly weak and helpless. I was in so much pain, was mentally impaired by the cloudiness and dizziness, and faced a very unpleasant situation that I was powerless to deal with.
Those two days (because things got worse before they got better) were probably two of the the hardest days of my life, in many ways.
I have never felt so desperate, so weak, so intimidated and so vulnerable.
I cried a lot that day, desperately and deeply (in a hospital ward full of other people).
Have you ever come to the end of yourself?
When you have no strength left physically or mentally.
When you feel desperately vulnerable.
When you can’t fight any more.
When you don’t know what to do.
At its worst my injury left me in severe pain and my body would start shaking violently in response. As this happened my mind would cloud over and take me into a drunk-like state.
You can’t think straight, struggle to talk, can hardly stand and walk, and it can be quite distressing.
You feel immensely vulnerable and it was in my vulnerability that I faced this intimidating situation that I couldn’t deal with alone.
In that moment I thank God so much for people who loved and cared for me. There was a wonderful nurse at the hospital who reached out to me in my desperation with compassion and understanding. My church family had already dedicated a week to praying for me and they fought for me spiritually in my dark hour.
My husband was at a pre-planned family gathering with my girls that day (over 2 hours away). It was to celebrate my Mum’s birthday, in her remembrance (just over a year after her death). He dropped everything to leave, earlier than planned, and got to me as soon as he could (about 3 hours later).
In my darkest hour I was physically and mentally wrecked and alone, and yet I did the one thing I could: I reached out to God in the midst of my desperation.
I knew that He would carry me.
When there was nothing left of me I knew He would hold me.
When I felt the most vulnerable I had ever felt, I knew I had advocate who was fighting for me.
And that is what got me through. Believing, hoping and trusting that things would get better.
I have never felt so desperate, so weak and so vulnerable.
CSF leaks can be very hard to fix. There is still a lot of uncertainly about the best ways to treat them. After two and a half weeks in hospital I ended up having a blood patch (where blood is injected into the epidural space in your spine) which helped a lot, but it certainly didn’t solve everything.
I again had to decide to hold onto my hope and have faith that it would get better. And things have got better. A sense of normality returned, but even 6 months on life post-injury is still a challenge in many ways.
I still can’t do everything I once did.
And that is hard.
As I shared in ‘Is Busyness a Choice?‘ I was a busy person. One of those people that always had a lot on and did a lot of rushing about.
But at the moment I still can’t rush about like I used to.
And it is SO frustrating.
I still have to sit and lie down at regular intervals. Especially when I have a lot on.
I often feel lightheaded, my head gets cloudy and a spaced out.
Life takes much more effort. Which is a mental, as well as a physical challenge for me.
I am a doer, a get up and get on type of person, but my body won’t always let me do that at the moment.
When your energy levels are low, everything becomes so much more difficult. The things you have to do become that much harder. And even your mental processing becomes impaired. These are all things that I still have to battle through daily.
I have to have wisdom to work out my days. If I know I have a lot to do I need to make sure I have clear rest points in the day, both before and after the activities I need to do.
It is manageable.
But it is frustrating.
And yet despite all these challenges I have learnt and grown so much.
I have so much more empathy and awareness of people with health issues. I hardly ever used to get ill, so my experience of battling this has given me more compassion for people who are struggling with injury and illness.
I have had to develop a longer term perspective so as not to get overwhelmed with the daily challenges. I have to see the bigger picture.
I have had to learn to say no to doing too much, allow other people to help me, and tell people when I am struggling. Which doesn’t come easy to me because I fight against self pity at all costs and do not enjoy being a victim.
Life has been more frustrating.
I have faced increased feelings of discouragement.
But I have certainly become more self aware and developed more humility.
The last six months have been tough in many ways.
I believe we can never give up or lose hope.
Without hope we have nothing to live for. It is always faith, hope and love that give us confidence for the future.
I have faced my own vulnerabilities and weaknesses like never before. And more than ever I know I cannot rely on my own strength to keep going and do all I am meant to do.
But that is not a bad thing.
Coming face to face with your own weaknesses and vulnerability can be a good thing.
In the Bible God said this to the Apostle Paul when he was struggling with his own weaknesses:
“My grace is sufficient for you, for my power is made perfect in weakness.”
Paul then wrote in response:
“That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong.” 2 Corinthians 12:9-11.
When I feel weak, I realise that I can’t ‘do life’ on my own. I realise that I don’t have the capacity and strength alone to face the challenges that life brings. But I do know God will work His power in and through me…. regardless.
That is grace.
The Almighty God uses us fragile humans in our weakness and vulnerability and makes us strong in His power.
When I come to the end of myself I have no where else to turn but God. It is then that God’s power works in and through me in the most beautiful way.
Because when you come face to face with your fragility you understand that we are all the same.
We are all human.
We all have struggles.
It is then, as God shows us His love and grace in the midst of our own struggles, that we can show love and grace to others in the midst of their struggles.
That is the power that works within us.
The power of love and the power of grace.
It is the mystery of God.
The divine paradox.
That weakness brings strength.
And that strength is spelt LOVE.
And love and grace are all you need!
So that’s my journey of surviving my unique storm. It is still not over, but writing this post has been helpful for me in looking back over the past six months, remembering, learning and growing towards the future.
This post has, in all honesty, been written through tears as I attempt to share some of the darker realities and vulnerabilities of my journey.
However, what I do know is that these dark days are not without purpose. They have been used to strengthen me and they will be used to help others.
There is always new strength to be found in weakness. Sometimes the journey to finding it will be painful.
But it is always there to be found.
How do you find strength in weakness?
Comments are always welcome below or on my social media links.
To read more about my ongoing story of living with a chronic spinal CSF Leak click here.
Here is a brilliant 2 min animation about Spinal CSF leaks.
For more information about spinal CSF leaks please see the UK charity website at www.csfleak.info or the US charity website at www.spinalcsfleak.org.
This is a wonderful new May 2018 medical paper about the 10 most common myths and misperceptions about spinal CSF leaks. It is by some of the top world experts in treating this condition. I was told so many of these myths by various neurologists, anaesthetists, radiologists and many other doctors during my lengthy and traumatic nearly 5 year battle with a spinal CSF leak. This kind of misinformation caused many delays, misunderstanding and great distress on my already immensely long winded and difficult medical journey.
This other in depth 2018 medical paper is about both low and high intracranial pressure syndromes and their similar and different symptoms. It also mentions cross overs with other headache types. When a patient suffers with a spinal CSF leak long term it can cause massive fluctuations in their whole pressure system both whilst suffering from a spinal CSF leak and following treatment. This is why lumbar puncture pressure readings and ICP pressure monitoring can prove an inaccurate disgnostic tool for SIH as this paper refers to as does the 10 myths paper. My initial LP reading was a 7 which was considered ‘evidence’ of low pressure by some doctors and normal by others.
This post was inspired by my last post called ‘Breaking Free! From Pretense’.