The expression ‘REFRAMING NEGATIVES‘to see them in a more positive light, captured my attention recently. One of my friends had been talking about it and then a couple of days later I happened to read it in a book as well. I really liked the concept and have been pondering how I can apply it to my own life and current health challenges.
How can I reframe a negative situation so that it can be viewed more positively?
It’s often not easy to do this when you are facing challenging seasons. But I do have to ask myself daily –what is my other option?I could spend each day dwelling on, and being overcome, by all the negative implications of my current restrictions. But then I am just going to end up in a cycle of despair and frustration.
I have been there and it is fruitless, so very destructive and just makes me feel worse in every way.
So my only other option is that I have to reframe it! I have to find some positives here!
Reframing is simply about looking at something with a different perspective. It’s about seeing ourselves, others, a circumstance or situation with new eyes. It can be a powerful and transforming process if we can fully embrace its potential.
“The real voyage of discovery consists not in seeking new landscapes, but in having new eyes.”– Marcel Proust
Our lives here are such, that there is always a sense of uncertainty about tomorrow. Yes there are some things we can predict, believe or hope for, because of decisions and choices we make today. But very little of our day to day existence in this world is truly fixed. There is an impermanence about our current lives. We all have to dwell in these fragile bodies that are subject to death and decay.
And yet there is also always a bigger picture we can’t see. I may only know the significance of today when looking back from the hindsight of tomorrow. Some parts of today may look desolate, like the deadness of a tree in winter, but perhaps my spring is coming somewhere around the corner. Maybe green shoots of life will again appear and grow from what currently looks almost dead. And that may look very different than I can perhaps imagine with the limited perspective of today.
Perhaps tomorrow can and will be better than today. Or perhaps tomorrow will bring even more challenges. But then in the weeks, months and years that follow, things might again be totally turned around.
We often just don’t really know what the future might bring!
I regularly have to look at my current health problems like that. I can see how one day, if fully recovered, I would get to look back, and whilst not forgetting the struggles of this season, I would by then be more able to focus on the lessons learned as well as the depth gained.
But that perspective is so much easier to SEE when approached with the gift of hindsight. When the storm is finally over it’s easier to look back and be thankful about the fact you survived and have learnt so much from walking through it.
And yet,
It’s not so easy to do that when you still feel stuck in the storm and there is currently no true ending in sight. You are weary from the mountain of disappointments, you are tired of hoping and believing it will soon come to an end – but then it never does.
But life still has to go on regardless!
The storm won’t yet clear – but life is still happening, time is still ticking away.
We have to find a way to keep on LIVING in this limbo– however long it lasts. I have to find ways to REFRAME the life I find myself living and find a way to live the FULLest life I can, amidst all it’s challenges and restrictions.
The unfinished painting, that is my life, is not looking as I hoped and intended it to look after 37 years on this earth. But rather than hide my unfinished ‘work in progress’ life painting away in the shame of its current state.
I have to choose to reframe it and hang it up for all to see – both the darkness AND the bright colours of this season. To show others that even the dry desert seasons, that seem to rob us of who we really are and want to be, can also produce exquisite detail. Detail that will reveal a new level of vulnerability and humility, if we let it. A deep work that brings growth, maturity and a better perspective during the struggle’s of this life.
I may not get to choose whether I walk through this road of chronic illness and pain. BUT if I can’t find a way to keep on LIVING here, how can I ask others to keep on LIVING and persisting in their own wilderness or stormy seasons? If I can’t reframe my own challenges to see the potential beauty here, then how can I support others to discover beauty when they are going through even tougher times than me.
I have a responsibility to my family and those around me, to find a way to reframe my struggles, challenges, weaknesses and failures. Until they become a voice to help encourage others in their own wilderness times.
Everyone faces battles that feel beyond them, at some point in their lives. And when we do, we need those voices that help us press in for the fight. People that understand both the pain of suffering and struggle, as well as finding a way to truly LIVE and press forward in its midst.
We need to hear the message that TOGETHER we can rise above the darkness of today. Until, even in the midst our own pain, we can become a beacon of hope to another.
So I choose to hang my ‘work in progress’ life painting where it can be fully seen. With all of its inaccuracies, imperfections and shadows. With both the lighter AND the darker shades both fully exposed. So that TOGETHER we can choose to SEE something different. And realise that the most inspiring and beautiful works of art are often not the ones of perfection. They are instead, the ones that tell a unique, expressive story of a REAL life lived.
A life of BOTH light and dark moments that are being made beautiful.Because the artist chose to see the potential of different shades of colour mixed together. A story that is being written to express something extraordinary. A masterpiece that will only become a masterpiece when it is finally finished. And when it is finished the times of preparation, rubbings out, mistakes, corrections and so many reworkings are no longer even perceived underneath.
A painting which tells the story of one person’s life journey. A human journey of both joy and pain, sorrow and laughter, suffering as well as true peace.
A picture that most of all I hope will tell a story of true love. A story about how it is love alone that truly conquers the darkness. It is love that can reframe any negative, until it ultimately becomes something far more vibrant and beautiful in the end. It is love that chooses to fight and never give up, even when our body is failing us.
So let me reframe my current challenges and see them in the light of love.How can I love in the midst of my ongoing storm? Who should I show love to in THIS season? How can I serve others around me, despite the many limitations of today?
So I welcome you into my world, with love, hoping and praying that TOGETHER we will find a better way through. That we can walk with each other celebrating the brighter seasons, whilst ALSO helping one another to reframe the darker moments of our lives. As well as the many many different shades of life in the inevitable seasons of the ‘in-between’.
“God had a purpose He knit you together for But life has pulled at the seams And you’re unravelling And you can’t hold it together anymore But God will, He will finish what He started No thread will be left unwoven Nothing will be left undone….. But when He’s finished we will SEE A beautiful tapestry And know that nothing has been wasted in the end.”
– Steven Curtis Chapman ‘Finish What He Started.’
“For we are God’s masterpiece…”
Ephesians 2:10 (The Bible)
Authenticity is really important to me.I have learnt that it is where true freedom lies. It’s when you have realised that you do not have to maintain a certain image or pretend your life is better than it is.
It’s liberating to just be you. The real you!
With your strengths AND weaknesses.
Your failures AND victories.
Your achievements AND embarrassments.
When you have nothing to hide, you do not need to fear others finding out about who you really are. There is no need to ‘impress’ anyone.
Pretending is just far too exhausting anyway!
“When people have integrity, their words and deeds match up. They are who they are, no matter where they are or who they’re with. People with integrity are not divided (that’s duplicity) or merely pretending (that’s hypocrisy). They are ‘whole’, and their lives are ‘put together’. People with integrity have nothing to hide and nothing to fear. Their lives are open books.” – John Maxwell
However,
I sometimes wonder – How can we be ‘real’ without wearing our heart on our sleeves the whole time? Shouldn’t there be limits to our transparency? How honest should we be with people on a wider scale?
Is it better to sometimes stay silent?
Of course it sometimes is!
There are many occasions where it would not be helpful or wise to divulge EVERY little detail about our thoughts, feelings and lives. Personally, professionally and socially.
However, I believe we can stay authentic and yet still hold back, but it’s an attitude of the heart. We can keep information to ourselves and those close to us, without hiding or pretending. It’s all linked to having a humble heart. It’s all about our motive for sharing information or keeping it hidden. Having wisdom to be aware of the context we are in, and judging how appropriate our words might be.
“When we are humble, we are down to earth. No energy is wasted on pretension. A humble man can be taken at face value.”– Erwin McManus
For me having a chronic illness means every day is a battle of sorts. It is the daily battle of positional (upright) unbearable headaches and other nasty neurological symptoms caused by a 2 year persistent spinal CSF Leak that we cannot yet find.
Most days I see people at my daughters school, in the street, at the shops or at church. And they often ask that daily question – “How are you?”
And every day I struggle to answer!
How can I be ‘real’ without launching into a long narrative about all the daily battles and challenges? How do I respond to the ‘how are you’s’ without sounding moany and negative?
And to be honest – do you really want to know anyway? Or should I just respond with the classic ‘fine thank you,’ because maybe I am actually ‘fine’ in a ‘but still battling a chronic illness’ way that day and maybe I don’t have the energy for a long conversation anyway.
But my desire to be authentic means I don’t want to lie either, I don’t want to cover over the reality. That is no good to anyone, because then I will just end up staying quiet and pretending and no one will realise how unwell I still am. (Which has happened before).
So I have had to find new responses ‘well at least I can be here today.’ Or these days I sometimes don’t say much and just smile at people with a ‘hmmm’ or I will say ‘I am not sure what to say – I am still not well, still waiting for new scans to try and find the leak, but I am very thankful that I am not stuck in bed as much as I used to be.’
Perhaps I should give out little cards that say…
“I feel unwell a lot of every day, but for now, I have had to accept it and live with it as best I can. I am better than I have been in the past. I have better moments and worse moments. I have days where I feel more positive and days that feel like more of an endurance test – than the normal daily endurance test of living with chronic illness and pain! But I also have so very much to be thankful for. Each day I have to learn how to live here and do the best I can to love others and help those around me.”
I don’t want to moan. I don’t want to only communicate the negatives. I want to stay positive. I need to stay thankful.
But I also do want to be ‘real’.
So for now I will try my best to be as authentic as I can. Without sounding like a broken record (because most people have heard all about it before). I will try not to hide so that people understand me and the condition better.
But how about instead of me telling you all about me – AGAIN. Please tell me about the real you too. Your victories AND your failures. Your celebrations AND your struggles. So that I am reminded that we are ALL human and all face our own unique daily battles. Yours might look very different to mine. But I am sure there is something that you are finding hard too.
Because if we always just tell each other we are fine. Then we will stay stuck with our own limited and potentially self focused perspective. Never really knowing what battles other people around us might be fighting too.
And that would be a shame, because then we will miss out on the beauty of true human connection. Connection that goes so much deeper, because we can be honest about our ‘whole’ selves. So we can listen and learn more understanding from one another too.
In the hope that it will help us to become better, kinder and more compassionate humans together.
We all know that life is full of good and hard times. All of us have experienced wonderful moments and very difficult seasons.
Why is it that we rarely ask the question ‘why me?’ for the good parts of life.I rarely think about why I was so privileged to be born into a middle class British family, rather than to a young prostitute, in abject poverty, in the slums of Mumbai. Or why I got to be born healthy with all my body parts as they should be, unlike others who were born disabled.
Yet when hardship and tragedy strikes, these questions often come into our heads and take room in our thoughts.
Why me? Why us? Why this? Why now?
For you, it might be a question asked in your own mind that you simply send out into the unknown. A question that asks why are we all here and what is this life about anyway.
Perhaps it’s a scream from inside stemming from comparison. Why did this happen to me and not them? It’s not fair! I am a better person than them and do more to help others and yet they are fine and I am stuck with this.
Or for those of us who know God, it can be a cry from deep within us – why did this have to happen? I don’t understand! Why should I have to suffer like this? Why should anyone have to suffer? Is it not within God’s power to prevent this? I thought he was supposed to be good!
The questions cause us to have to consider our life, beliefs, perspective and the world more deeply. They can draw us into impossible and exhausting mental gymnastics as we try and work out the intricacies of predestination, fate, acts of good or evil and whether things in life do all happen for a reason, or are purely a random set of circumstances.
But I have learnt the ‘why me’ questions don’t get me anywhere. And they naturally lead to the ‘why not me’ anyway. It’s then just a never-ending cycle of questions that wears us out.
I still believe in and love God deeply. But my accident and ongoing debilitating CSF leak/ Low Pressure Syndrome have naturally raised questions linked to my faith. This has, at times, been a difficult journey of wrestling with the unknowns and uncertainties, considering different answers and perspectives, learning new things, but then ultimately letting go of the need to know and accepting where I am at today.
In the end what has happened, has happened. We cannot change the past – all we can do is learn from it and move forward. Whatever that moving forward may look like.
There is undeniably pain and suffering in the world. Whatever you believe, you cannot deny that fact. So perhaps the question should not so much be;
Why is this happening?
Which we can never completely answer and can rarely control – unless our problems are self inflicted and/ or could be self resolved.
But instead perhaps we need to change the question to focus on;
What can I DO with my suffering?
It shifts the focus from getting lost in the complexities of unanswerable questions and things we cannot currently change and puts the focus back onto what we do have more control over.
Our RESPONSE to suffering.
Can I still find meaning and purpose here?
“Suffering can be what economists call a “frozen asset.” It may not look remotely like an asset at the time, but gradually we can find meaning in it, an enduring meaning that will help to transform the pain.”– Philip Yancey
“Today is mine. Tomorrow is none of my business. If I peer anxiously into the fog of the future, I will strain my spiritual eyes so that I will not see clearly what is required of me now.” – Elisabeth Elliot
That is the lesson I am trying to live out every day at the moment. To embrace each day as a gift. I am who I am and can only do what I can do in this moment.
If I am always waiting till tomorrow, I will not fully embrace today.
I have been unwell for 2 years from a spinal CSF leak. Every day of that 2 years I have felt unwell. Some days more than others. But each day is full of challenge.
I never imagined how hard it is to live like this. How deep you have to keep digging to stay sane. It is definitely one of those things you can only fully understand once you have experienced it.
It’s tough.
Every day is a battle of sorts.
Some days we have to fight harder than others.
Persevering can just be so very exhausting.
There are moments it’s hard to muster up the strength to face the new day.
But what choice do we have other than to keep on taking hold of each new day and finding the opportunities here?
Some days are exhausting. Others go that bit more smoothly. Some are just plain tough. Others have such beautiful moments within them.
But whatever the day brings I have to keep on walking forwards. Placing one foot in front of the other. Accepting the limitations whilst refusing to let them take me over.
If I am always waiting till tomorrow, I will not fully embrace today.
A big lesson I have had to learn is the ability to LET GO. Everyone reaches a stage on their journey with chronic illness or any other long term trial in life where you have to accept your current reality, let go of your old ‘normal’ life and choose to make the most of your life and what it looks like HERE today.
We can still hope for a better future, but not at the expense of living today.
Letting go is not an easy process. It’s a bit like grief – you can go through various stages to reach that point of acceptance. It is often painful. It’s choosing to say goodbye to who you once were and accepting the reality of who you are now. Not knowing when and if things will improve.
It’s the day you decide that you have to keep living within the uncertainties, the limbo and make the most of the reality in front of you now.
It’s choosing to keep going whatever barriers are thrown up before you. To get up when you fall down and to gather up the pieces when you feel broken again and again. To choose to keep on living.
It’s a letting go of the old to discover and embrace the new.
My faith helps a lot with the process of letting go. Over the years I have learnt the daily discipline of surrender, of saying to God – I am letting go of my life and future, please take control because I can’t do this alone. It is allowing His love to be my strength in weakness, my peace in the midst of the storm and allowing my struggles to develop in me more compassion and love towards those around me.
This process helps to keep my heart tender towards others rather than my heart becoming increasingly hard. It’s about keeping my perspective right so that negativity, bitterness or blame don’t take root and destroy me. A daily reminder to keep believing that good and positive things can come out of times of pain. A decision to look outside of myself each day to see what what I can still do here. To remember that there are plenty of others walking a similar or even more difficult journey than me. People I can encourage and walk alongside. Taking hold of new opportunities even within the difficulties.
There is a freedom that comes in letting go of the things we can’t change and choosing to take control of the things we can.
So each day I have to choose to let go of yesterday and the unknowns of tomorrow. I have to see what I can do today and embrace it. Not comparing it to what I used to be able to do or what others around me can do. If I look around me I will often see those who continue in their ‘normal lives’, and I can forget the many for whom – like me – their old normal is becoming a distant memory. The ones that choose to stand up, amidst the pain, to face another day and to craft out a new normal.
A normal that although perhaps tainted by brokenness, cracks and wounds that might still feel quite raw, has the potential to be even more beautiful that what went before. Because we now know how to just about weather the never ending storm and LET GO in the midst of it. To craft out new meaning and purpose that has to go so much deeper than ever before.
We have to fix our eyes on our own path whilst doing what we can to help, support and walk alongside others as well. We can walk our unique paths – with others – whilst not getting distracted or fixated on the differences between us. Instead we can choose to support one another and learn from what is similar and what is different. Celebrating the good times and weeping over the hard times together.
One thing this journey has taught me is that..
once you know what it feels like to reach the utter end of yourself
when you have watched your life be thrown up in the air and fall into pieces on the floor around you
…your heart becomes more tender to feel others pain too.
You can then reach out to another and together you can find a way to LET GO in the midst of the storm. We can embrace who we can be and what we can do today rather than always waiting for the storm to clear.
So each day I will do the best I can to embrace the here and now regardless of the unknowns, uncertainties and future battles. With the resolve to be the best and do the best I can in the midst of all the limitations.
And just let go of the rest.
“God grant me the serenity to accept the things I cannot change; courage to change the things I can; and wisdom to know the difference. Living one day at a time; enjoying one moment at a time…” – Reinhold Niebuhr
Yesterday I watched a deeply moving and beautifully filmed advert (yes an advert!) for an American energy drink of all things.
Adverts have certainly changed over the years.
It’s about a top ladies basketball player from the U.S.A called Elena Delle Donne and the intense bond that she has with her special needs sister who cannot see or hear and has various other health issues and learning difficulties.
It is such a beautiful and moving film showing how they deeply communicate and bond through touch and other senses.
The basketball player speaks about how the simplicity of feeling the wind against your face becomes something so profoundly beautiful when you imagine not being able to see or hear.
It fills her sister with “pure joy.”
But there was one line in particular which touched me deeply. It spoke to me so loudly and grounded me in this difficult season I am in.
“You don’t focus on what you don’t have, you celebrate what you do!”
Wow!
How often do we forgot this profound yet simple truth?
How often do we focus on everything that is wrong with our lives and then miss celebrating the wonder of what we do have?
At the moment I am in quite a lot of pain. Sometimes my spinal fluid leak seems to flare up my nerves in my head, down my spine and throughout my body. So that even when ‘lying flat’ (which normally brings great relief) my whole body just feels ‘in pain’.
It’s not helped by the fact that I am trying to write this on my phone whilst lying flat.
Which just seems to exacerbate it.
And yet, when I feel inspired, when I have something to write, I just want to get it out. So that I don’t forget. So that the stirring within me is not lost and the words that are bubbling inside me don’t go flat.
So what do those words from the advert mean to me? In this moment when pain meets a different perspective? When I have to try and see differently than how I feel?
“You don’t focus on what you don’t have, you celebrate what you do!”
There are two opposing perspectives through which I can see my life at the moment.
The first focuses on the disability of this condition and what I DON’T have. Everything I have lost. The uncertainty of the future. The challenges of getting medical treatment. The endurance needed whilst waiting months for hospital appointments. The constant pain, fatigue and limitations.
The second focuses on what I DO have. The blessings of a loving and supportive husband. A roof over our head and food on the table. Of my two beautiful girls being old enough to not need me to do everything for them. The fact my accident didn’t paralyse me or cause lasting serious brain damage. That I can be ‘upright’ more than I used to. That I can see and hear and get to write, listen to and watch things on the wonderful handheld computer that is my smartphone.
Two different ways of seeing. One that can quickly lead to despair. The other that leads to gratefulness.
Both true, both real.
And yet one can lead you to darker ways of thinking. The other to joy and bright memories.
It is so very hard to keep perspective when you are in pain. The more you endure pain, the more strength it takes to stay positive and thankful.
Your body screams at you:
“But this is too hard!
I’ve had enough!
I can’t take this anymore!”
But your heart pulls at you whispering:
“You can STILL love,
You STILL have purpose,
You WILL have better days,
Things CAN get better.”
When I take my eyes off what I don’t have and move my gaze to what I do, it transforms my thinking. It brings light into dark places. It reminds me that although things are tough, they could be worse.
A thankful heart is not only the greatest virtue, but the parent of all the other virtues.~Cicero
There is a verse in the bible that says: “Be thankful in all circumstances,”-1 Thessalonians 5:18
If your life is going well it’s easy to be thankful, but when things don’t go well gratitude is so much harder.This bible verse can then just feel like a kick in the shins.
“It’s alright for them with their happy, easy life (like we really know what battles others face). If I could just be fully well – THEN I will be thankful.”
And yet, I do believe there is ALWAYS something we can be thankful for. In ALL circumstances. Even when we are hurting and in pain.
I can remember early on in my CSF leak journey, when I still thought I had Post-Concussion Syndrome and was literally stuck lying down in a dark and quite room, I couldn’t even look at my phone screen or listen to music. One day I was feeling really fed up and self pity was knocking on my door persistently and wouldn’t leave me alone.
I had some pistachio nuts to eat that day, the ones that you have to remove the shell. And I decided in a bid to deal with my self pity, I would think of something to be thankful for as I opened each and every nut.
Something so simple really did change my perspective at that time.
It’s amazing the number of things we can be thankful for when we are disciplined to remember them.
It’s not always easy. Each and every day there is some point when my thinking can start falling into ‘woe is me with all my burdens and pain.’ Pain screams despair at you. When it’s particularly bad you wonder if you will ever make it through another day.
And yet I do make it through those days and those dark hours. And then I stumble upon videos like the one above and the words jump into my heart reminding me:
“You don’t focus on what you don’t have, you celebrate what you do!”
And yet again I find that I have to dig deep to find the gratitude and strength to press on and keep fighting another day.
We then find that we are perhaps stronger than we think. Gratitude gives fuel for the fight. It grounds us in a better perspective. And reminds us that although things are not necessarily going well – there’s STILL so much to celebrate in THIS moment.
“Gratitude turns what we have into enough, and more. It turns denial into acceptance, chaos into order, confusion into clarity…it makes sense of our past, brings peace for today, and creates a vision for tomorrow.”– Melody Beattie
What could you be thankful for today?
What are the things you DO have that you can celebrate?
“There is no greater agony than bearing an untold story inside of you.” – Maya Angelou
I started this blog at the start of January 2015. For a while I had wanted to write. But in all honesty I was scared.
“What if I write and nobody wants to read it?”
I soon learnt that writing isn’t just dependent on others reading it. It’s a great form of self expression in its own right. It’s the attempt the find the right words to tell our own stories about our lives.
One of the first momentous, yet deeply personal stories that I shared was the first anniversary of my Mums death in a post called ‘A Journey Through Grief and What I Have Learnt.’I had felt that in telling my own unique story, people might just connect and maybe they could relate as they struggled through their own story of grief.
Little did I know that the same week I started this blog and wrote the above piece, would be another life altering week for me.
That was the week that I sustained a brain/ spinal injury I am still battling now –
21 months later.
That day I was painting and needed to reach high up near the ceiling. So I used a relatively small step ladder to stand on, but it was resting in a place that wasn’t completely stable. I had already used it that way for hours and felt confident it was ‘stable enough.’
But my confidence was misplaced.
I took a seemingly small risk, the type that we all take everyday. But on this particular day my risk taking didn’t pay off. It was that day I had an accident. It was that moment where it felt like so much went wrong.
I have been living with the consequences of that decision ever since.
In one horrible moment the whole ladder had toppled over and took my feet from under me with it. I fell onto my back and hit the back of my head….
But, It’s OK! I am fine! A bit dazed! A bit bruised! No real damage done!
Or so I thought!!
So I finished that painting. Exhausted & aching all over, but obviously to be expected after painting all day and having a few bruises from the fall. But within 48 hours it became obvious,
I WAS DEFINITELY NOT OK!!!
Two days later I was diagnosed with a concussion.
“You should be better by next week.”they told me. But I wasn’t….It got WORSE!!
So we went down to A&E.
“I am sorry Mrs Hill you have Post Concussion Syndrome. You are looking at about an 8 week recovery time.”they said.
No surely, not me. Give it four weeks. It can’t be that bad. That is such a long time!!! (I confidently, yet naively thought!) I’m sure I can bounce back like any other time I have been ill for a few days.
Eight weeks later of being pretty much bed bound, in a dark and quiet room, and things still getting worse.
We head down to A&E for the third time since my fall.
I was finally admitted that time because I was so unwell, in severe pain and vomiting after being given morphine which didn’t touch the pain, only made me feel even more ill. I was finally seen by a Neurologist the next day and she moved me to their ward to look for evidence to support their initial diagnosis of low pressure headaches caused by a spinal CSF leak.
I am not going to list all my symptoms because I have done that all before. But what I will say here is that I am so very, very grateful to a handful of people who in the midst of their own pain and struggles decided to help others like me.
I have to tell you about the wonderful team at www.csfleak.info who helped me to understand more about my injury and helped me to realise that the fact I ONLY ever felt remotely well LYING FLAT IN BED for those two months, was not due to post-concussion syndrome after all,
It was probably due to a SPINAL CSF (Cerebrospinal Fluid)LEAK!
This meant that somehow the accident had caused a small tear in the membrane in the centre of my spine (the dura) that holds in your spinal fluid. This means that my spinal fluid leaks out and is absorbed my body.
So when I am upright sitting or standing, due to gravity, my brain drops in my skull, because it lacks enough fluid to hold it in place.
Twenty One months after my fall.
I am still not better!
I have had some ups and downs along the way. Bad months in 2015 of being almost fully bed-bound. And other months after epidural blood patches (I have had 3) of being mostly upright.
But since that fall I have never had one single day of being…
Fully Symptom Free.
Such is the journey to full healing with this unusual and often under-diagnosed condition. Many people do get diagnosed, receive treatment, get well quickly, and never look back.
But many others face constant battles, discouragements, set backs and difficulties throughout their journey of being diagnosed and treated. Often a lack of knowledge by the medical profession makes getting fully better hard for many.
Recently, I have become so acutely aware how little many doctors, and the general public, know about spinal CSF leaks. I have heard so many stories of people struggling to get a diagnosis and, even when they do, facing many barriers to treatment.
There are many hospitals that really don’t know what to do with ‘these rare patients’and this often makes delays in treatment an unfortunate reality for many.
I am so grateful for an amazingly supportive and well informed group of CSF leak sufferers who form an online community through the ingenious invention of Facebook groups. Many of us cannot imagine how we would have faced this journey without one another and I honestly think that some people in those UK and US based groups would not be alive today without that wonderful resource. Despair and suicidal thoughts are very prevalent within this group of patients.
Having someone tell you “I get it”whilst you both spend yet another day staring at the ceiling, flat in bed, can mean everything to someone really struggling. Even when that other person is half way across the country or even the world.
We face the daily struggles together!
It can be a lonely and difficult road battling a chronic illness. That road sometimes feels impossible when you slowly begin to realise how little knowledge a lot of doctors have about your condition.
I recently watched a very moving video, that is on the wonderful US spinal CSF leaks charity website. www.spinalcsfleak.org/resources/patient-stories/ About a lady who got a spinal fluid leak from a very badly placed epidural for the birth of her second child. She got two dural tears from the needle which caused spinal fluid to leak from her spine.
It took her 2 1/2 years to recover (she had a new born and 4 year old at that time) and she had to have 11 epidural blood patches (where they inject your own blood into the epidural space in your spine) and two surgeries to get better.
But what struck me the most was that even though everyone knew the area of her spine the leak would have been in (which is half the battle with traumatic (or spontaneous) leaks like mine) time and time again doctors refused to listen and often implied that there is no way she could be leaking CSF, and perhaps it was instead, ‘all in her head’ or something she would ‘just have to live with’.
I cried so much watching it because myself and many other leakers have faced similar battles to hers.
I find it heart breaking when people are suffering and needing help and support. And yet due to a lack of knowledge and understanding by the medical profession AND the general public, people are often told things like;
‘We have got nothing left to offer you,’ ‘Try your best to get on with your life’ ‘Perhaps you should try and get out more.’
Which is just a slap in the face when you are literally stuck lying flat in bed!
And yet, it doesn’t need to be that way!
There has been so much research done about spinal CSF leaks already. There IS knowledge out there. There are specialists who are leading the way, publishing medical papers and providing hope that many people CAN fully recover and perhaps don’t have to just learn to live with it after all.
Peoples minds need to be opened.
Medical professionals need to know that there is more information out there than they might realise. That there are a whole range of diverse symptoms. That people can still be leaking and debilitated, yet still function (well sort of) upright most of day. That there are many different kinds of treatments available and things that can be done to help.
Recently I have been thinking; how I can spread awareness?
How can I do my bit to help make the way clearer for those patients coming after me?
What skills can I offer the cause that might make a difference for both me and others?
One thing I have chosen to do is write. I can use my words to draw attention to this condition. I can tell my story in the hope it eventually reaches the people who need to hear it.
“Well, everybody’s got a story to tell and everybody’s got a wound to be healed.”– Plumb
So today that’s what I want to do. I want to welcome you in to my world. I want to share with you a snap shot of what it is like living with a chronic CSF leak. So that you might have some more understanding yourself.
These days I am so very thankful that I get more hours upright than I used to. It really does make it that much easier to deal with. It helps me to feel more a part of the world around me and connect better with my kids. But it is still very very hard and debilitating to live like this.
Here is a typical start to my day….
I got up about 7:30am this morning. Lying in bed in the mornings I can actually feel pretty normal. But that feeling never lasts for long!
I get up, shower, get dressed and have breakfast, including a cup of tea and 2 pro plus caffeine tablets (because I can’t stand coffee!!) – which can help to give me a bit more up time (although I often find it can be an artificial type boost feeling). During this time I already feel the neck stiffness and occipital (bottom back of the head) pain beginning to build up, but it’s manageable and relatively mild.
I drive part way and then walk my youngest to school. Chat to the other parents/ carers, go back to the car. Then this morning I decided I would pop to the shops.
My head is getting worse bit by bit, the pressure is building, the pain in my neck/ occipital region is increasing and my head is beginning to feel more full and a little cloudy.
I go into the supermarket – only to get a few things so it’s not too heavy. I don’t use trolleys, I don’t use a basket. I don’t take a handbag – only my purse – so that I can get as many things as possible and carry them without making my symptoms much worse.
So depending on what I have that might be 4-8 lightish items that I can hold in my hands/ arms without dropping them. If I do drop one of them (like the other day), I have to leave it or ask a shop keeper to pick it up for me. (Because bending down might make my leak, and will certainly make my symptoms, worse. At home I use a grabbing stick like the one below).
The nausea is setting in.
I pay for them on the self service check-out which is at an awkward angle so you have to bend a little to put them on the counter once scanned.
This increases my symptoms.
I bag them up and pay and by this point – just carrying the weight of those few things is making the nausea worse, so I start gagging in the lift to the car park, feeling like I want to vomit (although I don’t think I am ever fully sick).
Thankfully there is no one else in the lift with me!
I drive the short distance home – put the things away. Talk to my husband while he’s making a cup of tea (he is working from home today). During our conversation my head and neck is getting worse (I feel like someone has whacked me round the back of my head with a baseball bat!!) and I start gagging again uncontrollably – but thankfully I don’t actually vomit.
So my husband says, “you’d better go and lie down.”
I walk up the stairs and can feel my legs beginning to get very weak, I have to think about the steps I am taking, willing my legs to keep moving. The cloud in my head thickens. That feeling of not being able to cope with the intensity in my head floods over me!
It’s 9:30am – I have been up two hours and can no longer function upright!!
I am now lying down flat in bed – feeling a lot better and writing this. I will stay here for probably an hour or two before getting up again to do some more jobs at home for maybe half an hour to an hour before the same thing happens and I have to lie down flat again.
That’s how it goes throughout the day – every day – although later on in the day the up times are often less and the down timescan get longer.
If you saw me at the school at 8:30am, even though I had symptoms, you would think I looked fine, chatting to people (which is great because some days I don’t get to see many people).
So this is me on a good day – last year during my worst times the above would all happen with my symptoms within about 10mins of being upright.
I couldn’t even have a shower.
I would have a shallow bath once a week which I would have to lie completely flat in. As soon as I got out I would have lie on the bed with a towel round me, with my wet hair on a towel. It would take at least 1/2 hour to 1 hour before I might manage to be upright enough to put some clothes on and dry my hair a bit with the hairdryer. Or often my husband would help try and dry it whilst I lay flat.
When I was in hospital, a year ago, waiting and battling for more treatment (a second epidural blood patch) – I was in a bad way. I would spend all day lying in a head tilted down bed to alleviate symptoms and keep my brain in the place it should be. I could only manage about 5-10 mins upright at a time which makes things very hard.
We were facing lots of barriers and delays at that time (which I write about here), because the anaesthetists didn’t want to blood patch me a second time (after 5 much better months following the first) they instead wanted me to try an occipital nerve block done by the pain management team. (I did have the nerve block, it didn’t work at all, but it did leave my head, neck and hair covered in the sterile cleaning stuff.) Following that it took me two whole days to find the strength to get my husband to take me into the shower in the hospital bathroom so that he could help me wash all the chemicals from my hair and neck and help me get changed. He then dried it with a hair dryer whilst I lay flat again. (That would pretty much do me in for the whole day!!)
It’s an utterly debilitating condition.It’s not good for anyone’s physical and mental health to have to lie flat in bed all day. And yet some people are left that way, long term, because doctors don’t know what to do with them. They don’t understand how to treat them.
They do not seem to realise how impossible it is to live like that!
People are just not aware that many spinal CSF leak patients end up feeling suicidal (as I did at Christmas and write about here) because of the physical and psychological toll of the condition. Which is often exacerbated by the battles to find doctors who understand the condition, show compassion and actually do their best to help you.
There can still be an ‘old school’ mentality at large in the medical profession, even following correct diagnosis, of trying one epidural blood patch (and sometimes not even one) but if it fails to fully get you well, then they recommend that they should just try to help you manage the pain.
‘Manage the pain?’
I don’t have a sore leg, or a mild headache that goes away with some pills or a even a worse headache and stiff neck that is solved through a nerve block.
My brain drops in my skull when I am upright, wreaking all sorts of havoc in my head and body until I literally can’t physically or mentally cope. You can’t just ‘manage’ that kind of pain. And actually I wouldn’t always describe it as ‘pain’ – it doesn’t do it justice. It is an intensity that can actually only be described as a sensation that is ‘beyond pain.’
(And just to add here that no painkiller I have had (Including IV morphine) has ever touched it)!
IT’S REAL! IT’S HORRIBLE! IT’S DEBILITATING! BUT – IT IS TREATABLE!
Things ARE changing, patients are speaking out and coming together as a force to challenge conventional thinking about CSF leaks. And thankfully, little by little there are more wonderful doctors who are meeting enough well informed leak patients to see how great their suffering is and are slowly beginning to offer them new opportunities for diagnosis and treatment.
When someone with a leak meets a doctor who understands, or at least tries to understand, it’s truly a beautiful thing. It honestly means so very much to us.
Those doctors will never be forgotten.
We don’t expect miracle workers. We know we may not be easily fixable. But to meet someone with a willingness to try, an ear to listen, a humility to learn and a compassionate heart can make all the difference to someone on such a difficult road.
In February this year (2016) a video was posted on You Tube that is doing so much to help change people’s minds and hearts about spinal CSF leaks. In the video Professor Ian Carroll from Stanford University Hospital in the U.S. gives a passionate lecture in which he is trying to enlist the help of doctors and medical professionals to help find and treat those suffering from spinal CSF leaks.
Through this video Dr Carroll has become our spokesperson, bravely, boldly & passionately challenging conventional thinking in the medical profession at large. And joining others in the quest to change current practice and stop people suffering unnecessarily from a mainly treatable condition.
I know for me, and many other longer term suffers, Dr Carroll’s video on YouTube is a breath of fresh air that reminds us that we are not going completely mad. So many patients have taken great hope through the impact it, and other recent information, is slowly having on awareness, diagnosis & treatment of spinal CSF leaks.
I am so very grateful for this wonderful resource from a doctor who is wanting to reach both doctors AND patients. I have gratefully been able to share this resource with some of the many doctors who have cared for me over the last 21 months. Some who have gone to great lengths to understand the condition more and do their best to support and treat me.
It is always a special moment when you meet a doctor who does watch the video or reads though the websites. People’s hearts and minds CAN be changed and it is wonderful when you see that happening.
Change does not often happen instantly. We are not all going to wake up tomorrow in a world where every person with a spinal fluid leak is going to get properly diagnosed, treated and fully recover. These conditions are complex and it takes time for understanding, research and practice to filter through.
But we can all play our part!
So today I want to ask sufferers and their families to think about;
How could you speak up and tell your story?
How can you be part of raising awareness too?
We might not all be able to write blogs, create websites, volunteer for the charities, fund raise or spread the word on the street. But perhaps we could post on social media, share a link, wear a t-shirt, or tell something of our own story.
Or perhaps you could respectfully share with a medical professional a medical paper on leaks, tell them about the UK and US CSF leak charity websites, or send them a link to Dr Carroll’s video.
You never know, they might just take a look –especially if you approach it well.
“I alone cannot change the world, but I can cast a stone across the waters to create many ripples.” – Mother Teresa
Change will only come; little by little, step by step, patient by patient, doctor by doctor, hospital by hospital.
By individuals and groups choosing to raise awareness and helping to challenge and transform conventional perspectives and opinions.
Perhaps we can all work together to enable patient and doctor to compassionately help one another to understand this debilitating yet treatable condition. So that even if we have had a tough and difficult journey ourselves, we can seek to build bridges with others that can open lines of communication. That might just change people’s hearts and minds for the future.
That way, we are building a legacy for the future. We are making the road that bit clearer for those following behind.
Mindful of the fact that they may never fully know the difficulty, struggles, sacrifices and battles of those who went before.
“Do not go where the path may lead, go instead where there is no path and leave a trail.” -Ralph Waldo Emerson
Please see this 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 3 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.
Please also see this other in depth 2018 medical paper 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 diagnostic 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.
‘Shame derives its power from being unspeakable…. If we cultivate enough awareness about shame to name it and speak to it, we’ve basically cut it off at the knees. Shame hates having words wrapped around it. If we speak shame, it begins to whither.” – Brene Brown
Over the summer I read Brene Brown’s fabulous book ‘Daring Greatly’.The book follows on from her famous TEDTalk on vulnerability that had previously inspired me to write this blog post on the power of vulnerability.
The full title of the book is ‘Daring Greatly:How the courage to be vulnerable transforms the way we live, love, parent and lead.’ It encourages us to dare to be honest about who we really are, rather than trying to hide our weakness. It teaches that vulnerability helps us to live more ‘wholeheartedly’, connect more with others and that it helps us to overcome the destructive burden of ‘shame’ we all carry.
Her book really got me thinking about this concept of shame. It is not something we often think about.
I have been part of the Christian church all my life so I am used to hearing the word shame. We believe it is something destructive that we can overcome and that the grace provided by Jesus’ death and resurrection can break us free from its grasp.
And yet, this book caused me to really reflect on shame; what it is and what it really means.It inspired me to consider these questions;
Where does shame have a hold on my life? How does shame effect my thoughts and actions? How might shame be damaging my wellbeing & relationships?
What is shame?
Words we often connect or use interchangeably with shame are words like: embarrassed or humiliated. It can manifest as feelings of inadequacy, guilt or regret. It’s something we often hide and cover up. We might self medicate to avoid thinking about it. We dread people seeing it.
And yet although shame is often seen as one and the same as guilt, I have come to see that there is a distinctive difference.
One of the main differences between shame & guilt is that guilt is the feeling of embarrassment or regret about something YOU HAVE DONE WRONG. We can feel shame, on the other hand, even when we have NOT DONE ANYTHING WRONG.
Shame is more connected to who WE ARE and how OTHERS PERCEIVE US.
“It’s a painful feeling about how we appear to others (and to ourselves) and doesn’t necessarily depend on our having done anything.” – Joseph Burgo
The more I thought about shame and how it manifests in my life, the more I became aware that it is intrinsically linked to the struggles I face at the moment. I began to see how shame had got a hold on me and particularly how it has effected me over the past year or so.
Finally I began to see and recognise that;
I FEEL ASHAMED THAT I AM BATTLING A CHRONIC ILLNESS!
There we go I have said it. It’s out in the open…
I feel ashamed that I am ill. I feel ashamed that it has gone on so long. I feel ashamed that I can’t seem to get well. I feel ashamed that I cannot work and be busy like I used to.
I feel embarrassed to be sick!
When I decided to speak up and write about feeling ashamed of being ill, it led me to google the words; ‘the shame of chronic illness.’ Through that search I found two insightful blog posts by a lady called Angelika Byczkowski in which she shares something of her battles with the chronic connective tissue disorder – Ehlers-Danlos syndrome (EDS).
She writes so beautifully about the humbling journey those with chronic illness and pain are forced to take;
“When I recently read the phrase, “I’m embarrassed to be sick,” it made my stomach clench and my breath catch. That’s exactly what I’ve been feeling….. I am ashamed of being sick…. …. If all the people not yet affected by chronic illness acknowledged all the undeserved pain in this world, they would be forced to confront their own vulnerability to the same forces. Instead, we all prefer to believe we have the power to prevent such disasters in our own lives. Sometimes I even catch myself thinking, “If you’re so smart, why did you let this happen to you?”
Those words were so revealing to my own heart. I have begun to see that I feel like a ‘failure’ for being sick. I feel like – ‘if I was only a bit stronger or wiser, made better choices, if only a bit more positive, if only I had more faith …. surely I could have overcome this sooner?’
Such thoughts often taunt me and drag me into a dark and negative pattern, which was particularly bad at Christmas, where I blame myself and feel responsible for still being ill.
It’s so humiliating to be so unwell and in pain long term.
Angelica highlights this so beautifully in another post called ‘The subtle arrogance of good health’. She writes about how many of us have fallen for the trap we set ourselves, because before we got ill we carried a form of arrogance at being healthy .
“My attitude was the typical thoughtless “arrogance of good health,” the attitude of those who can’t even imagine what happens when a body stops functioning properly. This arrogance knows only the kind of pain that heals, the kind of sickness that is cured.”
As I read those words I too knew it was talking about me. Before I got ill, I had carried the ‘arrogance of good health.’ I had believed that I was strong enough to shake it off when others couldn’t, because that was all I knew.
I was not the ‘type’ who would succumb to its chains. I was always so healthy and surely I could overcome anything thrown at me right? Surely my faith and positive mindset would win?
And then one day in January 2015 I fell off a step ladder and entered the world of chronic invisible illness and pain. I acquired a debilitating spinal CSF leak and brain injury that I haven’t YET overcome. I have been unwell for 20 months. Each and everyday I battle through chronic pain, physical & mental fatigue, a foggy brain, barriers to treatment and the challenges of not ‘being able’ to heal up, get well and get free.
And honestly, I feel ashamed on so many levels!!
I feel ashamedthat I have now become one of those people with ‘chronic pain’ and ‘chronic illness.’
I actually hate using the word ‘chronic’ at all! (Which is revealing of the sterotypes I accepted before).
I feel ashamed to tell you that I feel weaker than I ever imagined possible; physically, mentally and spiritually.
I feel ashamed that my ‘old’ positivity has taken a massive hit and most days I battle overwhelming feelings of despair at the thought of not getting better.
I feel ashamed that I broke down mentally at Christmas, exhausted and with nothing left for the fight, and seriously considered ending my life. I feel ashamed that the same ‘selfish’ thought has returned at times since then, although thankfully not to the same depth.
“In my view, suicide is not really a wish for life to end.’ What is it then?’ It is the only way a powerless person can find to make everybody else look away from his shame. The wish is not to die, but to hide.”– Orson Scott Card
I feel ashamedevery time I have to update people on where I am at, and that I have to tell them I am still not well, it’s got worse and it is not yet over.
I feel ashamedwhen I can’t tell you that I have finished the fight, overcome, won and beaten this dreadful condition.
I feel ashamedthat I cannot yet testify to the fact that I am now fully healed and whole, even though I believe in a loving creator God and Father who can do the impossible.
“O my God, I trust in You; Let me not be ashamed;” Psalms 25:2 – The Bible
I feel ashamedtelling doctors that I can’t seem to get better and hope that they will see past the ‘chronic pain’ patient with the unusual condition and know that it’s not ‘all in my head’ so that I can continue to get treatment.
I feel ashamed when the scans are clear and don’t show any evidence of a CSF leak, when the treatment I receive doesn’t ‘fix’ me or when my symptoms don’t always fit with the diagnosis.
Each day this drags on the shame gets worse. Each day the shame is becoming almost as much of a burden as the illness itself. Each day the shame is debilitating me and making me feel small. Each day the shame is robbing me of my voice and tempting me to retreat from the world.
And it has to stop!
I HAVE TO BREAK FREE!
So today I am making the ‘unspeakable’ speakable; for myself and the multitudes who also travel the dark road of chronic illness and pain.
I am speaking out my shame so that it can no longer chain me up with its lies.I am choosing to acknowledge the space it has taken up in my thoughts; so that we can tear down its strongholds together.
Today I chose vulnerability; to speak the unspoken, so that you and I won’t have to suffer again in silence.
Today I choose to fight shame so that even though this condition taunts me daily, trying to persuade me I can never be free; it doesn’t have to define everything I am, do, and my relationships with those around me.
So today, whether you are battling chronic illness and pain or know someone who is; I pray that together we can tear down the ‘chronic pain’ stereotypes that perhaps we also once secretly adhered to ourselves, and no longer allow it’s shame to rule our and others lives.
“If we cultivate enough awareness about shame to name it and speak to it, we’ve basically cut it off at the knees. Shame hates having words wrapped around it. If we speak shame, it begins to whither.” – Brene Brown
What do you feel ashamed of? We all carry shame in some form. Please feel free to comment below – if we can speak it then perhaps together we can beat it!
Here is my new summary video of my whole medical journey https://youtu.be/cKECz_fCnFw as well as footage of my January/ February 2021 adhesive arachnoiditis relapse/ flare and treatment with IV Steroids. To see my daily video diaries from this time please see my YouTube channel: https://www.youtube.com/channel/UC9ZkCy9B_IpeaGrXd0CEgow
These beautiful lyrics are a reminder that we sometimes have to slow down enough to live in THIS moment. To not let life rush us by. To make the most of every experience and to enjoy sharing those moments with others. Forgetting the ‘what-might-be’s’ and learning instead how to ‘slow to now’ so that we can be fully present;
Today Now In this moment.
The challenge of learning to BE, is just that. It’s about being present now, today; whatever today may bring. To not be defined by what we do or the titles we own.
Instead it’s about being:
ME, simply me, NOW.
This is probably one of the main lessons I have been learning over the last 18 months.
To be fully present TODAY,not distracted by fighting the limitations I currently face or the unknowns of tomorrow. But instead choosing to embrace THIS MOMENT and making the most of the opportunities I have HERE.
It’s not been easy. In fact, I have probably found it harder than any other point in my life. Because when you are dealing with difficult circumstances it is so easy to miss the wonder of the small things that still surround us. And yet, I have set out to learn and change for the better. To learn how to ‘let go’ of the unknowns, even when it’s so hard and when the future can seem so uncertain.
It’s a journey. I am still learning. I face the daily battles everyone else faces in their minds.(Particularly those of us fighting serious/ chronic illness or other turbulent circumstances).
And yet I hope that in sharing what I am still learning that we might learn together and in that way my journey might just help someone else.
So how do we learn to BE? It all sounds deep, but what does it really mean?
LETTING GO
Recently I have learnt a lot about the need to ‘let go’.To realise that there is so much I can’t control that I can only let go of. To choose not to allow worry and anxiety to take over and constantly dictate my mood and behaviour, overshadowing all I do.
Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of it’s own. – Matthew 6:34*
Worry and anxiety are usually caught up in our fears of the future and the ‘what if’s’. When we allow them to take over our thoughts they pull us to a place where we feel out of control and where the future feels beyond what we can cope with. That is what happened to me during the dark days at Christmas 2015 that I write about in ‘Breaking Through the Darkness.’
Letting go is often challenging, because you feel like you are letting go of everything you can’t control one minute only to find yourself taking it back the next. It actually takes learning new disciplines of the mind to learn to replace negative thoughts and learn how to redirect them.
It can often feel like an exhausting battle. But I do believe it is possible to find ways to replace negativity with positive thoughts and perspective.
On a practical level, deep breathing & relaxation can be a good outward form of letting go that can sometimes help us to deal with the inner things. The physical action of breathing in deeply then breathing out slowly can help us to let go of some of the tension and anxiety in our bodies.
BEING GRATEFUL AND THANKFUL
“It is not happiness that makes you grateful. It’s gratefulness that makes you happy.” – David Steindl-Rast
These words are from David Steindl-Rast’s TED talk; ‘Want to be happy? Be grateful’. He talks about how we can learn to be grateful in EVERY given moment. It’s about a thankful perspective; CHOOSING TO SEE what we DO have instead of focusing on what we DON’T.
This is so important. Especially when we are dealing with difficulties in our lives. The storms in life have a tendency to pull us into them so that we can’t always see what we DO still have and the things that we CAN still be grateful for.
For me, gratefulness is often directed towards God. I daily try to thank Him for all the wonderful things in my life. We can learn to develop a daily habit of being thankful – practically we can write things down, pray about them or just choosing to focus our thoughts on them.
“I think that many times we let what should be extremely special to us—things we should be extremely grateful for—become too commonplace”. – Joyce Meyer
LEARNING TO SEE WHAT IS AROUND US
Learning to BE allows us to open our eyes to SEE more of the wonder of the world around us. To notice the beauty of nature and the joys of human relationship. We can become more aware of our surroundings. Taking time to look more deeply and discover new things.
I have walked a lot in our local area over the past few months and discovered so many new places I had never been before. Sometimes there can be beauty all around us but we miss it because of our busyness or the distractions in our mind. Some days we need to be intentional about looking to SEE what is ALREADY around us.
REDISCOVERING PURPOSE
I believe that we are all designed to have a purpose; a role in this world that only we can fulfil. Endeavours that help us to feel alive and make our mark on the world. However, ask anyone who has faced having to ‘give up’ what they love to do due to injury, illness or other circumstances and they will probably tell you how hard it’s been.
Our identity is so caught up in ‘what we DO’ that when we can no longer DO those things we can feel purposeless. It feels like our life is of little value anymore.
Scott Dannemiller writes: “… we are defined by what we do. Our careers. What we produce. It’s the first question asked (of us)…. The implication is that if I am not busy doing something, I am somehow less than. Not worthy. Or at least worth less than those who are producing something.”
I have definitely grappled with this over the past 18 months and wrote about it in Is Busyness A Choice?.
WHO AM I WHEN I CAN’T DO ANYTHING?
It is actually these seasons that draw out the deepest questions about our identity. Who am I really? We have to search for new meaning and purpose because it is not always obvious.
I have had to learn that I am valuable without having to DO anything. I have a place in this world just being me. And whatever the limitations are, there are still so many things I CAN DO:
I can love others.
I can hold my family and speak words of love and encouragement to them.
I can use my words to encourage and help others going through hard times.
I can choose to be grateful for every blessing, big or small and communicate that to others.
I can keep enduring through the trial so that we can all learn through it and that those coming behind me can have an easier path.
I can broaden my mind by listening to other people’s thoughts and ideas.
I can go deeper in my faith by spending time listening to and speaking with God in the quietness and allowing His words to shape my heart, heal my hurts and reignite my hope and purpose.
FINDING PEACE AND REST AMIDST THE STORM
Is it really possible to learn how to find true rest and peace in any moment, even when those moments are stressful?
We can learn to manage our emotions rather than allowing them to manage us. –Joyce Meyer
But I also believe that we have to learn new ways to deal with negative circumstances so that they don’t pull us into a cycle of negative thoughts.
The fact is physical rest is NOT always good for our minds. We DO need to rest and we certainly DO need quietness. But sometimes the silence can be deafening, especially when rest is enforced. This is because rest can cause our minds to go into overdrive. Our thoughts take over and if they are more biased towards the negative, silence can make them worse. (Think of times you couldn’t sleep because your thoughts were ‘so loud’).
So we need to have resources that help us to be still and restful and yet simultaneously focus on more positive things. Music and meditations are good. I also love listening to inspiring talks like TED talks, other people’s stories of trials they have faced, as well as teaching and inspirational messages that encourage my faith. These help me to focus my mind and gain a better perspective through prolonged rest.
So I am again choosing to ‘learn to Be’. I am not yet fully recovered from my CSF leak journey. Whilst some of the symptoms linger I have no choice but to learn a new way of living in which I cannot DO everything I would like to do.
But instead of fighting this season and getting worn outas I did at Christmas,I have to ‘let it roll’ to a certain extent. Yes, there are many things I can do and can change that will help my situation and I need to celebrate those. But I also have to realise that there are also many I just cannot change myself. So instead of frustration consuming me, I have to learn, each and every day to ‘let go’ of the ‘what may be’s’ and ‘slow to now’ so that I can savour;
Every Beautiful Moment That STILL exists HERE.
Please do comment below and share some of the things you have learned about ‘living in the moment.’ You never know, it might really help someone who is struggling.
Hope deferred makes the heart sick, but a dream fulfilled is a tree of life. – A Proverb*
Have you ever reached the end of yourself?
REALLY reached the end of yourself?
When you are depleted at every level: Physically, Mentally, Spiritually, And psychologically?
When despair sets in and a darkness envelops you that feels so strong it literally attempts to strangle any life and hope out of you?
My world came crashing down in the week running up to and over Christmas this year and I fell apart in a way I never would have thought I could or would.
You see – I am strong! I don’t give in easily! I have a very real and deep faith in God! I have a healthy thought life! I don’t do being ‘weak’ so well!
I had held on all year.
Through an immensely difficult year for our family, following a serious and unusual spinal injury (a CSF Leak) that left me with major neurological problems.
I had finally received more treatment (a second epidural blood patch) for debilitating Low Pressure Headaches caused by a suspected CSF leak, and I had to muster up all the strength I had left to be positive, overcome fear and give recovery its best go. As I wrote about in When All that Remains is Faith, Hope & Love.
I had to bestrong enough. Somehow I would be strong enough. I wasn’t going to give anything else away to this horrible condition.
I wouldn’t let it take more of my life.
The problem is that sometimes life takes us to places that are quite simply beyond us. Things don’t work out how we thought they would.
We give it everything we’ve got.
And then we find we have nothing left to give.
We humbly discover that we too are one of ‘those’ people we perhaps used to look down upon.
‘Those people’ who can’t cope. ‘Those weak people‘ that can’t keep going when life gets tough.
We discover….
THAT IS ALSO ME.
And it blasts everything we once thought about ourselves out the window.
‘We’ become ‘them’.
The one battling a chronic illness.
The one who ‘broke down’ mentally.
The one who felt like escaping life was perhaps better than living it like this.
And a new journey starts.
After weeks of waiting and battling for treatment – a second epidural blood patch – everything was poised in my mind.
THIS HAD TO WORK!
I HAD TO BE WELL AGAIN!
Being a positive, faith-filled person I filled my mind with that hope. Surely after all the discussions, waiting, battles and disappointments – it would work – IT HAD TO!! Our family couldn’t go through the trauma and chaos of any more upheaval because of this horrible and unusual injury.
I finally had my blood patch and all appeared to go well – although it certainly wasn’t an instant ‘fix it all.’ So I did what I always try to do – focus on the positive, believe, step out in faith and trust that as I regained my physical strength and conditioning that I would find complete health.
I did all that I could to push through various lingering, unpleasant symptoms. Stay positive and keep going. The problem was my body and mind was exhausted and as I pushed it more and more, it began to shut down. I survived for a time on shear willpower and adrenaline but 3 weeks after my blood patch I developed acute insomnia.
I would go to bed exhausted, sleep for 30 – 60 mins, then be awake all night …..every night…. for two weeks.
No ones body can survive like that whilst also battling a major neurological condition.
But I tried to keep on going, I thought ‘if I just keep going then I will get tired enough to sleep’. Then my conditioning will get back to normal.
I just wanted to be well for Christmas to leave this difficult year behind in 2015.
Things spiraled out of control physically and mentally – my symptoms seemed all over the place – before crashing in every way.
It was Christmas.
Usually a fun-filled family time of sharing gifts and eating together.
Christmas 2015 is a blur to me. I cried my way through it, in all honesty, exhausted, depleted in every way and not even wanting to live anymore – if living meant this.
I felt so very unwell and the relief that lying flat used to provide was not alway’s there. Which is why I couldn’t sleep. It was torture. My body and mind were utterly exhausted. I didn’t know what was going on.
I assumed that the blood patch had eventually failed and because of all the battles to get it I was not sure I could access another one.
I could no longer think straight. I could no longer see a way forward. I lost my perspective.
I naively and ridiculously found myself ‘wishing’ that what I had was terminal – because at least there would be an end in sight, if it was. At least there would be an escape from the inner and outer pain that I felt.
PAIN CONSUMED ME.
I felt stuck between an inner pain, grief, physical pain and such exhaustion that death seemed the only way out. Yet I knew to choose death would devastate those I would leave behind. Which added to my pain.
Darkness enveloped me and pain became my reality. Hope felt out of reach. Faith attempted to hold on with its finger nails but was losing it’s battle.
My pride was shattered.
I was not so strong after all.
I couldn’t do it anymore.
Hope deferred makes the heart sick – A Proverb*
My heart was sick and I felt lost in a pit of despair that no one could lift me out of. Even my wonderful husband was struggling to reach me.
There comes a time when – however strong we are – we come face to face with the depth of our weakness.
I had never imagined I could be ‘that person’. That I could reach a place where thoughts of depression, despair and even suicide not only became real but became an obsession.
I just wanted it all to stop!!
I couldn’t do this anymore!! I couldn’t take the chaos!! I couldn’t take feeling so ill!! I couldn’t face the battles of trying to convince doctors to help!! (I actually thought me falling apart mentally would make my chances of getting help for my underlying physical condition even more problematic. I was scared that they would assume it was all ‘in my head.’).
And yet I first had to face the reality of where I was. I had been battling an injury that directly affected my brain – for a year. I had spent almost 6 months of that year in bed, lying flat almost 24/7 and the rest of the year at nothing like full capacity.
There comes a time when – however strong we are – we come face to face with the depth of our weakness.
But, I still felt like I had failed. I blamed myself.
One mistake with a ladder had cost our family so dearly.
One accident had robbed us of our future.
One moment had wrecked EVERYTHING!
I decided that I had then probably ruined my last chance of getting better by ‘blowing’ this blood patch by doing too much.
I had no ‘fight’ left in me so hopelessness washed in like a flood.
EVERYTHING BECAME DARK.
I couldn’t see past the darkness. Attempts to battle negative thoughts whilst being physically so depleted and unwell seemed fruitless.
I JUST WANTED TO ESCAPE.
I convinced myself that my family would be better off without the burden of such a debilitated, chronically-ill wife and mother.
The pain of thoughts of dying came face to face with the pain of thoughts of living.
I DESPAIRED OF LIFE ITSELF
“Courage isn’t having strength to go on – it’s going on when you don’t have strength.” -Napoleon Bonaparte
BUT……. IN THE MIDST OF THE DARKNESS LOVE BROKE THROUGH!
All was not lost.
Love reached out to me and helped me to hold on. Grace was still there waiting to be rediscovered.
I had to open my eyes again to see that the light of love was still burning in the darkness.
Family and friends simply loved and supported me. They helped me to rediscover a better perspective. My 8 year old daughter used to come and sit on my bed and with all the passion she could muster she would tell me how much she loved me and that she wouldn’t want any other Mummy but me – even when I am so unwell.
A new journey began. It was not easy. It has been painful. It has been hard. It has been confusing.
I have wrestled with myself. Wrestled with my identity. Wrestled with my faith. Wrestled with the darkness. Wrestled with various neurological symptoms. Wrestled with how to move forward.
It has been a very confusing time symptoms-wise. After the new year things began to improve. Some things were still like low pressure headaches. Some felt different. It was hard to know what was going on in my body, brain and mind. Doctors were not always sure either.
I had to discover the strength each day to put one foot in front of the other to just get through intact. To pull through the pieces of a broken life and somehow find hope again.
“Honesty & steadfast faith – especially in the darkness – forms a powerful & enriching message for everyone in pain….. Sincerity and humility are essential.” –Samuel Chand
Darkness had enveloped me at a time when I felt like I couldn’t find God any more. Hope returned as I discovered He was there with me all the time.
I just couldn’t ‘perceive’ Him.
I had to rediscover God’s love and grace. Learn to ‘let go’ of the life I had lived and choose to trust and hope that I could recover and that there was something better ahead. I had to battle the fear and anxiety that tried to persuade me that I would never be free. I had to learn to get comfortable with stillness, quietness and to embrace true peace and rest on a deeper level.
I had to learn to perceive God’s voice in a new way and hold onto the truths spoken over me.
I have had to rediscover who I am in its simplest form and be OK with a more simple life for a time.
A new depth of humility helped me to see that I had sometimes judged others ‘weakness’ because I didn’t understand them. I have now developed a deeper empathy and compassion for others facing challenges and struggles; especially those linked to chronic and mental illness.
I have had to discover a new kind of strength that is actually born out of weakness.
It’s been an immensely difficult journey and one that it has taken me a while to write about. For a long time I felt like I had lost my voice and had very little to say that could help others.
And yet.
I know that as we talk about our deepest weaknesses and vulnerabilities, others can connect with us and know that they are not alone. It then gives our own pain more purpose because our story can bring a ray of light in the midst of another’s darkness.
“We may impress people by our strengths; but we connect with them through our vulnerabilities.” – Nicky Gumbel
It can be invaluable to know that someone else is also struggling and that your journey can help them too. We can then navigate the stormy seasons in our lives TOGETHER and some how help one another to weather the storm.
Albeit wounded.
Yet stronger.
With a new perspective.
More appreciation of life.
And a deeper empathy for others.
“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
Please do feel free to comment below.To read more about my initial injury and journey with a CSF leak/ Low pressure headaches you can see these posts.
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.
“Three things will last forever—faith, hope, and love.” – 1 Corinthians 13:13 (the Bible)
One thing is for sure; I am not going to forget 2015 for a while. I think for our family it will be known as ‘that year’ for a long time to come.
What a journey it has been!
When I started my blog at the start of this year I didn’t expect to be writing about all the very real and immensely difficult challenges we would imminently face this year.
When your life is stripped back it reveals what is at your core. What comes out of you during tough times shows what you are truly made of.
It’s a truly humbling journey.
Yet, through all the chaos, the pain, the distress and the brokenness this year, three things always remained. Many times they were all I could hold on to. Some days I had to dig deep for them; sometimes despair tried to take their place. But despair and fear always ultimately failed to take me down, because I knew these three things would always be there.
FAITH HOPE LOVE
They are unchanging powerful forces at work within the universe. The only eternal truths that were consistent even when so much was going wrong.
They are the divine characteristics of my creator; my father and friend who was always there with me, helping me, teaching me, guiding me and strengthening me.
A light in the darkness. Peace in the storm. Hope in despair. Strength in weakness.
The still small voice bringing calmness, love and direction when life seemed to be falling apart.
Following my relapse the Neurologists decided that most of my symptoms could be directly related to a CSF leak/ low pressure headaches and I perhaps never even had a concussion. However, this is all very difficult to prove, especially because none of my MRI and CT scans showed evidence of any diagnosis.
I finally did have another high volume epidural blood patch after much waiting and debating from doctors.
This procedure has helped me immensely.
I am very thankful for the neurologists at our local hospital who fought on my behalf, for weeks, so that I could access that treatment. All the delays were immensely difficult as well as frustrating and made my symptoms worse, but I always had to acknowledge that my case was unusual and doctors are still learning about CSF leaks and low pressure headaches. Hopefully my case will at least help things to change locally as the doctors learn more about the condition.
Finally a wonderful consultant anesthetist at the hospital agreed to try a second blood patch for me. I am so very thankful for that doctor who took great care over the procedure, was willing to learn about my condition and valued me as a person as well as a patient.
I had 28ml of my own blood injected into the epidural space in my lumbar spine, which is shown to often improve spinal fluid pressure levels and help heal any leak. As it was slowly injected into my spine, towards the end of the procedure, I felt the pain in my head and neck lift which was a great encouragement to me.
The procedure showed initial success and I saw the benefits straight away, but I still faced a massive physical, mental and spiritual battle over the following hours, days and these past two weeks to press forward into recovery.
When you have been ill for a while, especially following a relapse of symptoms, it’s hard to dust yourself down and get back up. There is a major mental battle to face when being upright is connected to so many horrible symptoms.
The blood patch went well but my body was completely out of condition because of the weeks in bed. Even finding the strength to get out of bed and spend time upright was a challenge, even though the direct low pressure symptoms were much improved.
You have to face a lot of fears. Fears of the blood patch failing, fears of relapse. Fears that come into your thoughts because of the continuing aches and pains that followed as my body began to heal and recover from the weeks/ months of trauma and weakness that had gone on in my body. Every ache and pain doesn’t suddenly vanish; some only improve as you get up and get back in shape.
Fear is not easy to face. It’s not easy to overcome. It eats away at your peace. It causes additional symptoms in your body. It makes recovery harder.
I realised that I had to overcome the fear and anxiety that can develop in relation to getting up and being upright again. Fear and anxiety can in itself bring new symptoms which mimic some of the actual low CSF pressure symptoms. The difference is these are improving as I face them and push through, whereas I was unable to do that with the actual low pressure symptoms.
The way I did this was to fill my thoughts with only things that can truly beat fear and anxiety. These are FAITH, HOPE and LOVE.
FAITH and FEAR are opposites. Faith believes that good will prevail. Fear focuses on the negative possibilities.
“Fear is placing faith in the ‘what if’s.” – Craig Groeschel
Fear kept knocking on the door of my mind with all it’s ‘what if’s, worse case scenarios and statistics.
Our fearful thoughts alone are enough to keep us bound and stuck where we are. However, over the years I am learning how to fight fear. I am learning how to overcome it.
I knew that my God would help me. So I threw myself onto the one thing that never lets me down – FAITH.
I knew I couldn’t do it alone. I was worn out, scared that my debilitating illness would creep back, that it wasn’t or isn’t all dealt with.
But in the midst of it I knew that I could not listen to all the fears because they would tell me that I was safer staying in bed, that I shouldn’t risk getting up and pushing through. I did still have to rest a lot, but I also had to help my body fully recover by getting up and out.
Staying in bed
I had to listen and rely on three things that are always constant and provided the wisdom I needed and still need to move forward.
Faith Hope Love
I knew if I could take hold of these truths I had NOTHING to fear. They empowered me to face my fears, one by one, and begin to overcome them.
I immersed myself in truth. I spent all the time I could listening to truths from the bible and stories of faith that encouraged, inspired, strengthened and brought freedom to my body, mind and spirit.
I turned off distractions and focused on everything that built faith, spiritual strength and hope.
I knew that I could only fight fear with faith.
Faith is a powerful force. It has attitude. It is unwilling to back down.
It has energy to face the darkness of fear, worry and anxiety. It speaks words of love, hope and truth. It builds you up and spurs you on to press forward.
It’s calming, peaceful yet firm voice pushes you forward and says, “you can do this, you can overcome this, keep going.”
Faith gives you momentum to press through discouragements and keep going.
However; Faith does not exist on its own. You must feed it. You must give it attention. So it can be strong enough to withstand the test.
Faith is supernatural.
It is profound but it is also very real.
When the unseen becomes more real to us than what we see around us, faith is truly alive. It leads and guides us; it teaches us how to behave and act. It helps us to make decisions and brings certainty when the way forward is not clear.
Faith can also bring healing and restoration if we will let it. It helps to find a way through and will not accept defeat.
Faith fights! Faith energises! Faith empowers!
It is because of faith and good doctors that two weeks after my blood patch I am doing really well. I am building back my strength and most of the residual symptoms are leaving. Life is returning to a new normality. New because I am a new person, but a good new because I have grown and learnt so much.
I am building up my physical, spiritual and mental strength. I have discovered a new sense of freedom in my life. I am breaking through more of my fears and learning to embrace this present moment and not allow the ‘what if’s of the future to steal my daily contentment.
A few days ago I went to pick my daughter up from school. As I walked down the school path the heavens opened and it began to pour with rain. My first reaction was “Oh No!” Then very quickly instead I thought – “who cares… let it rain, let it rain hard! I get to walk, outside, on my own and pick my daughter up from school. No rain is going to steal the immense joy I feel in my heart in this moment.”
I never want to lose the wonder of health; of being able to breath, walk, talk, live life, enjoy blessings and be a blessing to others.
I am learning to be so immensely grateful for the small things. To find joy even when it pours with rain, to dance in the midst of the storm.
I honestly don’t know how I could have faced the past year without FAITH. I am not sure I would have survived without HOPE. I definitely couldn’t have overcome without LOVE.
I have realised more than ever before that these things are what are most important. That without my faith and relationship with God this year would have been unbearable. Without His loving hand guiding me and helping me, I would not be where I am at now.
So I am very thankful. Thankful to know Jesus. Thankful for faith, hope and love – in all its shapes and forms. Thankful for friends, family and all the support I have been given.
And I am thankful for life. To be able to live and to love. To be able to get up, be with my family and begin to do all the things that have been snatched from me for so much of this year.
In 2015 I have: learnt, grown, struggled, faced, embraced, survived and thrived.
It has been immensely difficult but I have been sustained through everything because of these three things:
FAITH, HOPE & LOVE
And nothing can or will take them from me.
“Three things will last forever—faith, hope, and love—and the greatest of these is love.” – 1 Corinthians 13:13 (the Bible)
Recently, I have become so acutely aware how little many doctors, and the general public, know about spinal CSF leaks. I have heard so many stories of people struggling to get a diagnosis and, even when they do, facing many barriers to treatment.
Becky Hill's Blog 