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Spinal CSF Leak, Suffering & Grief

Dear Doctor, From Your Naked Patient

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Dear Doctor,

Perhaps we once met, perhaps we never will.

Regardless of which it is – today I just want us to try and understand one another better. Because if we can TRY to understand one another more, then perhaps we can work together to help your patients find more holistic healing and hopefully make your job a little easier too.

I decided to try and connect with your heart today, because I know that under all those important professional masks, doctor degrees, awards, uniforms, stethoscopes, sometimes fancy clothes and endless medical guidelines….

You are simply human like me.

Today, you might be my doctor and I might be your patient.

But perhaps yesterday, today or tomorrow we will equally face the same or similar challenges in our lives. The kind of personal difficulties and traumas every human faces at times. The types of trials and wrestlings that are simply common to our humanity, and a normal part of our broken world.

Maybe tomorrow you may even face the horrible illness I am facing today. Or perhaps one day you will find that one of your loved ones is in my ‘patient shoes’ – and someone else is in your own ‘doctor shoes’.

So please could we connect as equals – as human to human.

Rather than my inferior condition to your superior position. Or my entitled demanding to your service providing.

Please would you take a moment to humbly listen, as I attempt to open my heart to you today?

First, I need you to know some of my own story for you to understand me better. To know that I have been very unwell for nearly five years now. In January 2015 I fell off a small step ladder and that one moment changed my whole life. And from that moment I was catapulted into a life of constantly being someone’s patient.

… Maybe being your patient.

During that time I have met some wonderful doctors who were able to connect with me, listen, and who tried to help me as much as they could. I appreciate them more than they will ever know.

They were bright lights in immensely dark places.

But most of the time I have met doctors who didn’t really understand. And some who didn’t seem to even want to try. I met many doctors who treated me as another inconvenience in their very busy day. Another form to fill and box to tick. The nameless, faceless puzzle to try and solve that day.

You see dear doctor…

I have a condition that you may not know much about. And even if you think you do know a lot about it, if you spent a couple of hours in my home listening to me and my family you would probably find that you don’t know as much as you think you do about my complex case. Even many ‘top neurology specialists’ don’t truly understand my condition – even though many of them think they do.

And because of that, some of you have unknowingly added to my pain, giving me wound after wound that I am still healing from today.

You see, for the past five years I have been battling a spinal CSF leak. Perhaps you have heard a bit about them. Patients can get them after lumbar punctures, epidural anaesthetic injections or spinal surgery. Recently more doctors are realising that spinal fluid leaks resulting from these procedures are probably more common than previously recognised. The truth about their devastation seems, in the past, to have been hidden – mainly because many doctors only knew of the classic acute PDPH (post dural puncture headache) symptoms; they didn’t know that you can be leaking spinal fluid and not be stuck flat 24/7. It’s possible that you can be upright a lot of the day, but still be very, very ill. Experiencing all sorts of other horrible, debilitating, distressing, rarely recognised and widely misunderstood neurological symptoms.

I acquired my leak from that step ladder fall in January 2015. More of that original story is here if you want to learn. All my scans – until recently – failed to show IH (intracranial hypotension) or evidence of a leak in my spine.

And yet….

Every single day since that ladder fall I have felt exceedingly unwell. I have not had one fully pain free day. I have not experienced a single day when my mind was clear and my brain worked like it used to.

I need you to know – dear doctor – that every day is a struggle for me. I have fluctuated between being bed ridden for months on end, to months of being upright all day.

And everything in between that as well.

But never well. Never normal. Never knowing the health I used to know.

I could never fully explain to you how impossible it has sometimes felt to live like this.

Recently – after more than four years – my UK NHS specialist team think they have located my CSF Leak in my cervical spine, a ventral leak, hidden at the back my dura on new MRIs. We are currently waiting for new scans to be read and reported to confirm and categorise the leak and work out a better way forward.

I was diagnosed with a suspected spinal CSF leak two months after my original fall. For a while they thought it was post-concussion syndrome – until I was finally admitted to hospital after my third trip to A&E. An understanding neurologist finally picked up on the fact my symptoms only went away lying down. Since then I have had 8 separate MRIs, a radionuclide cisternogram and a CT myelogram of my brain and spine. Until recently, they ALL failed to show any evidence of a spinal CSF leak at all.

Can you imagine how hard it is to be so very, very ill, but lack the vital evidence that definitively PROVES to you that I am leaking CSF from my spine?

I know I am as ill, and sometimes even much worse, than some of those who have the scan evidence you want to see. And yet I know that some of you still doubt me, and I know that some of you still don’t think it’s all quite true.

Even though…

  • Research shows that at least 25% of spinal CSF leak patients don’t show classic signs on their brain MRI. *
  • Medical papers show that around 50% of patients don’t show the leak on spinal MRIs.*

And yet I still often feel that I have to ‘prove’ to you how ill I really am.

That my lack of evidence is my own curse.

My own fault maybe?

I have been there with you. Lying flat in a hospital bed as you have towered over me, asking question after question, requiring me to prove myself to you. Feeling like I am a criminal standing in your ‘doctors court’.

With you as the ‘appointed judge’ over my medical destiny.

Do you know how deeply you have wounded me?

To be unbelievably and traumatically ill with a ‘apparently rare’ brain condition, and then find I also have to summon up energy (I don’t have) to ‘fight my case’ in your ‘doctors court’.

Challenging me to PROVE how ill I really am.

Do you know what damage that has done to me?

You probably have no idea how much it has affected me these past five years. How much it wears me down. How much it has infected my mental and emotional stability. How much shame I have had to carry.

Simply because in your busy, overwhelming, important – and often under-valued – job, some of you seem to have forgotten that your patients are simply human.

Just like you!

We share a fragile humanity.

I know that to some of you we are simply different diagnoses that come and go. Some more complex than others. Some that don’t quite fit the ‘diagnosis box’ you are trying to force us into. Simply ‘medical cases’ – charts, scans and notes – that walk into your busy world one day…

… never to be seen again.

Do you realise how much it messes with our heads?

The reason I am writing to you today is in the hope that somehow, I can re-connect with your human heart. Maybe – just maybe – we could get better at understanding one another again. So that we don’t have to end up with all of these painful misunderstandings and confrontations, which can sap your energy just as much as mine.

I know as patients we also need to realise that you are only human too.

That you are not ‘miraculous supernatural healers’ that can defy the laws of medicine, physics and nature. You are simply humans, trying your best to help other sick humans heal up and get well. Many of you wish you could do more for us – not less. You are bound up by the ‘system’ that controls you, by ‘modern medicine’ with all its exhausting bureaucracy, targets and restrictions. We know that there are those of you with equally broken hearts who wish you could offer us more than you do.

I am sorry that we sometimes forget that you are human as well. When we get lost in our own vulnerability, shame, pain and confusion and lash out at, and blame, you unfairly. I am sorry when we also fail to treat you with the kindness, compassion and gratitude that you deserve, as you work with systems that often overwhelm you and bring you crashing to your own exhausted knees.

But today, I can only speak from what I know. I can only try and share from the heart of a very broken patient, who knows that things really do need to change.

You are all overworked and overwhelmed in many ways. And yet some of you seem to be more connected to your own humanity than others. Some of you seem to know how to connect with your patients heart to heart. Some of you achieve this despite all the many challenges of your role.

So I want to say thank you. I know that you are the ones listening to me more openly today.

Recently I have been thinking more deeply about what ‘being a patient’ can feel like for us and how to try and help you understand more – dear doctor. Especially for those of us stuck lying completely flat in a hospital bed due to a spinal CSF leak.

But also as A VOICE for your many other patients as I try to explain what it feels like for us to enter your normal vocational world.

You see, for you, the hospital is your workplace. For us, it’s often an immensely distressing place.

We are not normally there by choice, but because we know that there is no other way to get well than to come to you. So when we enter your ‘hospital work place’, we often feel so vulnerable, so confused, so distressed, so exposed, and often in so much pain.

One way to describe it to you is that we feel like we are metaphorically simply naked and exposed for you all to see.

You may not have ever been a deeply vulnerable and distressed patient yourself – so we know it’s hard for you to fully empathise and understand – but if you want to try and understand us better when you come to see us…

Can you take a moment to imagine and picture what it would feel like if it were you lying on that hospital bed, fully naked – so exposed, vulnerable and ashamed – with absolutely nothing to cover you up?

Our own masks, worldly titles, fancy clothes, make up, hairstyles and badges of honour have ALL been snatched or stolen away. So we are subsequently feeling so cold, so messy, so vulnerable, so distressed, so confused and so naked – whilst you are simply getting on with your daily grind in your normal place of work.

Please be kind to us. Please be patient with us. Please listen carefully to us. Please TRY to understand us.

Don’t stand at the foot of the bed and tower over your patient – she feels small already – take a minute, sit down, listen…Try to understand. Realise you will never understand. Try anyway.”

– C. Sebastian*

Dear doctor, we feel small already… please don’t make us feel even smaller.

In our smallness you can often appear so big, so important and so intimidating. You are covered in all your doctor masks, doctor clothes, doctors badges and medals of honour, and talk with your important-sounding ‘doctor speak’.

Sometimes we don’t even understand what you are saying.

Because you are not talking to other doctors; you are talking to your naked patient who already feels so very small and so very stupid lying down in that hospital bed.

Please listen carefully to us before you attack and accuse us of not feeling as ill as we say. Please open your minds to the fact that just because we don’t fit your boxes, it doesn’t mean we are not truly very, very sick.

You are meant to be our healers – not our accusers.

Dear doctor, you should know that after leaving your hospital or doctors office and perhaps never seeing you again, over the past five years I have experienced two intensely excruciating complete mental health collapses. I have also found myself close to those places again and again.

And in those places – normally when I completely relapse physically, I stop sleeping and have no energy to fight anymore – in those places, all of my traumatic memories of encounters with intimidating and insensitive doctors return to me. I picture you as scary ‘doctor-judges in the medical court’, and I don’t have the energy to try and ‘prove myself’ to you again, and face getting my case thrown out with the lack of suitable evidence.

So I want to just give up.

Dear doctor, did you know that in those dark and distressing places my broken and exhausted mind decides that death might be my only way out. The only escape from the constant battles. The only way to end the never-ending fight. The only way to stop having to defend and prove myself again and again to another intimidating ‘doctor-judge.’

Did you know that your insensitive words and actions one day could indirectly contribute to my death?

Do you realise how serious that is?

You see, when my impossible medical journey pushes me to places beyond what I can endure, when my mind packs in and my body breaks down due to the immense stress and strain of daily battling a debilitating and distressing misunderstood neurological illness year after year…

I end up feeling more broken, more vulnerable, more distressed, more naked and smaller and smaller than ever before.

I feel like a worthless and insignificant judged ‘chronically-ill’ nobody. Who just cannot get well. However hard I try.

Dear doctor, I then need you to know that I need you to see me as…
Just another naked and vulnerable human patient…

…. looking for someone to help cover me up. Someone who can put a blanket of compassion, kindness and hope over me so that I won’t feel so very very cold, ashamed and completely overwhelmed from the fight.

You see…

I am your naked patient.

So please understand that in my nakedness, all I can see is all your importance, all your knowledge, all your intimidation, all your doubts about me and my case, all your intelligence and words I don’t always understand.

So you scare me!!!

I can no longer see your equal humanity; I can only see my naked inferiority beside your beautifully adorned superiority.

So dear doctor, please be gentle with me. I am not as strong as you think. My heart has been broken and wounded again and again. Some days I just think I will sink.

All I see is my broken humanity. All I see is my naked vulnerability.

So dear doctor, today I wanted to connect with your heart. I wanted to try and reach you, human to human.

As your equal.

To please ask you…

When I feel that naked, the best way to help me is to remember that underneath all of your adorned and celebrated doctor-robes, you are just a naked human too. You may not feel it so much today… or even tomorrow. You may not really ever understand what I am actually trying to say.

But please try and imagine yourself as that naked patient, lying in that hospital bed. And think about how you can move a little closer to our inflicted lowered level and status; to sit down, to listen, to try and understand…

Whilst realising you can never fully understand.

But please do TRY anyway.

Because one day…

That naked patient…

Might be you!

And then you will want to meet a kind and gentle doctor, who can also relate and connect to your vulnerable and exposed naked humanity.

And I hope that they will try to bring you more holistic healing….
Rather than inflicting wound after wound after wound... that can sometimes be even harder to heal from than the original condition over which you met.

Sent, with heartfelt tears, gratitude and deep respect for your willingness to listen and learn,

From,

Your naked patient

“Don’t stand at the foot of the bed and tower over your patient – she feels small already – take a minute, sit down, listen…Try to understand. Realise you will never understand. Try anyway.” – C. Sebastian

*Quote from this beautifully insightful TED talk on encouraging ‘Narrative Humility’ in the medical profession.
Narrative Humility: Sayantani DasGupta at TEDxSLC youtu.be/gZ3ucjmcZwY

UPDATE: Please note that in August 2020 I was also diagnosed with arachnoiditis as well as a spinal CSF Leak – I now have radiological evidence to support both those diagnosis. To read more about the new diagnosis please see this link.

Here is my new summary video of my whole medical journey 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

For more posts about my story of living with a spinal CSF Leak please look at the subject heading on the menu bar above.

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.

*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 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.

*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 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.

Perspective, Suffering & Grief

Compassion Starts with Embracing our own Pain

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“Compassion asks us to go where it hurts, to enter into the places of pain, to share in brokenness, fear, confusion, and anguish. Compassion challenges us to cry out with those in misery, to mourn with those who are lonely, to weep with those in tears. Compassion requires us to be weak with the weak, vulnerable with the vulnerable, and powerless with the powerless. Compassion means full immersion in the condition of being human.” – Henri Nouwen

The meaning of the word compassion is literally ‘co-suffering’ or ‘to suffer together’. Compassion is not simply a feeling that comes and then passes like sympathy or pity. Having compassion is being so deeply moved in your heart with the pain of another that you are compelled to act to somehow alleviate that suffering.

We are literally ‘joining together’ with the one suffering to help and support them.

It’s actually a deeply painful emotion. But the intense feeling is not focused on ourselves – it focuses on ‘the other’ who is suffering in some way. This means, although painful, it is a deeply beautiful and even freeing emotion. Because it takes the focus off our own challenges, trials and pain and focuses our attention on supporting and helping someone else.

However, the irony of compassion is that we only truly feel it, and are moved by it, once we have first embraced our own life struggles and pain. Until we recognise the pain that suffering brings to us, we cannot truly begin to understand the pain it brings to others.

This is why some of the most compassionate people you will come across are those who have felt a similar pain to yours. It may not have been exactly the same, but they at least experienced it enough to see it and feel it in you.

Suffering together copy

Compassion is linked to empathy. Empathy enables us to understand and relate to what someone else is feeling. Compassion then takes empathy a step further, in that those empathetic feelings are intensified into a passion that leads to action. We are deeply moved to act! To do something to alleviate the person’s suffering. That act might be seemingly big or small, but it will be something that we actually do practically to help them. Motivated by the hope that it will help alleviate that persons suffering – even if only a little.

I really do love the quote at the top by Henri Nouwen. I believe the last sentence is particularly poignant:

“Compassion means full immersion in the condition of being human.”

What does he mean by this, what is the ‘condition of being human’? 

To me one of the most striking characteristics of our humanity is our brokenness. It’s the fact that we are all born as vulnerable, weak and dependant babies. And we will also all die vulnerable and weak from sickness, an accident or old age. Our human body has a fragility and mortality about it which means that we are plagued by weakness in different ways. We have many vulnerabilities; physically, mentally and emotionally. We are all prone to seasons of suffering and struggle. We are also all imperfect, we all make mistakes.

There are no humans who truly make it through their whole lives feeling perpetually strong, having it ‘all together’ the whole time, without any obvious weakness, vulnerability or struggle. Some people might like to project that mirage to others but the reality is we are all imperfect and fragile in similar and different ways. The fact is, our common humanity dictates that – if we do live to old age – all this will become more than evident, as eventually our body and mind fade and stop working altogether. If we do not live that long then death perhaps will ‘take us out’ early, again brutally revealing our weakness and mortality.

It’s this understanding of our ‘common humanity’ that helps us to become more loving, empathetic and compassionate people. This is why it is actually in times of trial and suffering that our deepest bonds with other humans can be formed – through mutual understanding, love and compassion. This is because it’s often only as we come brutally face to face with our own personal weakness and vulnerability that we can potentially connect more wholeheartedly with others because of it.

“The strongest relationships are formed in the heat of difficulty and the confession of weakness… honesty breads more honesty… it’s about sharing our common humanity.”– Patrick Regan

Those we can share our whole lives with – our struggles, pain, vulnerabilities, weaknesses, shame and guilt – are those who we generally form the strongest bonds with. Relational safety comes in someone knowing our weakness and failings – but loving and staying loyal to us anyway. This is always when our connection with others becomes more deeply profound.

This is when love is most beautiful and its bonds become most powerful.

It is only when someone sees the depths of your own ‘darkness’ – but chooses to love you regardless – that the true beauty of deep relational connection blossoms. There is perhaps nothing more deeply moving in life than this. This is where true unconditional love abounds.

This is also the place that our sense of compassion is potentially deepened, because we have arrived at a place where we know what it is to be faced with our own darkness, vulnerability, suffering and shame. Our hearts can potentially become softer and more malleable towards others. We have been humbled by the distressing awareness of our weakness, which can make us kinder and more understanding to other’s weaknesses.

However, you will see that I used the word ‘potentially’ in that last paragraph twice! The truth is, not everyone who suffers will show increasing compassion to others. This is because suffering can go two ways: it can cause us to become more self consumed, hardhearted, angry and bitter OR it can help us become more tender, understanding, compassionate and loving.

Ironically, embracing our own weakness and pain in seasons of suffering – but then turning those feelings outward to focus it on having compassion for others – can actually help alleviate the suffering of both of us. Suffering always grows darker the more it pulls us back into ourselves. Compassion, instead, provides a light for the both the giver and receiver – as the giver directs their own pain into helping alleviate the pain of someone else.

Acting to alleviate another’s suffering helps bring more meaning and purpose to our own.

Compassion

In reality though: in what ways can we practically act compassionately? Especially when in so many situations what we can actually do is so restricted?

The thing is, compassion doesn’t demand that we fully fix another’s difficult situation. For instance, when I was immensely suffering from an acute spinal fluid leak in recent years – I couldn’t reach out to another, who was also leaking, and fix their main physical problem. As much as I would have liked to have done so, we were both somewhat at the mercy of a debilitating and misunderstood condition. We couldn’t actually ‘fix’ it ourselves – we needed compassionate doctors to help. However, there are so many ways I could respond to and share another’s pain and act with compassion to their suffering.

Just telling another that we ‘get it’ and understand their pain can be an act of compassion. Which is one of the reasons I decided to write so honestly in this blog. If we can humbly ‘get over’ our own fears and insecurities of ‘getting real’ about our struggles, we can then choose to act compassionately by connecting and reaching out to another honestly – amidst our own, and their, pain. We can’t just think about it – that is sympathy or empathy. Compassion calls us to act on those feelings and practically connect to encourage, support and hopefully help alleviate some of the potential loneliness of suffering. Simply hearing ‘I get it’ means a lot to someone really struggling. This is often the first step in acting compassionately.

Giving your time to support someone struggling through spending time with them in person, over the phone or digitally can be an important act of compassion. Often patiently listening to them process their struggle and trying to understand their pain can help them immensely. Or simply looking for ways to encourage or uplift them in an empathetic way by sending some kind words, a card or gift. Practically, if we do live near by we might show compassion by cooking a meal, taking their kids to school or on a day out, or offering to drive them to a hospital appointment.

Little acts of compassion can speak the loudest when someone is struggling to make it through the next hour, let alone the next day. It was often the things above that spoke the loudest to me at the darkest moments of my own journey with a debilitating long term illness.

“Do small things with great love.” – Mother Teresa

Compassion doesn’t always require us to do something BIG! In fact, normally we can’t do something big – even if we had more time and resources. Many situations cannot be changed overnight with one action. There is a long and arduous process involved in acceptance, change and potential recovery. Compassion is often most profoundly shared in the little acts. The little things that shows someone in pain that you understand (or are trying to) and that you care.

However…

We need to keep in mind that the first step to being ‘moved with compassion’ – in choosing to ‘co-suffer’ with another – is that genuine compassion requires us to SEE and feel that person’s pain and struggle first. Before we do or say anything! That way, our words and actions will pour out from that heartfelt overflow of empathy. They will then be more obviously genuine and tender. You can’t fake compassion – it is easy to see in someone’s eyes, words and body language whether their supposedly compassionate words and actions are truly real or simply forced. In my own experience this can often be a problem for members of the medical profession, especially those who have lost that connection with their and their patients ‘common humanity’. 

Genuine compassion will only flow out of our true hearts, when we have first seen, felt and embraced our own pain, vulnerability and weakness. If we have not done that effectively, if we insist on denying and attempting to cover over our own human brokenness, we will simply become increasingly self focused and self absorbed human beings who spend their time pridefully keeping up their mirage of strength and pretension at other’s expense. This will inevitably end up with those people getting increasingly frustrated with others or even despising other’s suffering – rather than being moved with compassion by it.

Is it not time to see more compassion in our world? Whether it’s loving the poverty stricken orphan in Ethiopia through child sponsorship, or simply actively listening to or taking a meal round for a friend or neighbour who is struggling. Can you imagine if our neighbourhoods, schools, hospitals and workplaces were full of truly compassionate people who knew personal pain, but could look past it, to recognise it in another. We could then support one another through the ups and downs of life without judgment, misunderstanding or ignorance.

Perhaps, if we embraced our own pain more, tried to understand it, then turned it outward to connect with another equal human – then we would all suffer a little less throughout our own unique life journeys. Compassion rarely makes all the pain go away. But all of our collective small acts of compassion can become another necessary cog in the bigger wheel of changing our world for the better – person, by person.

“Love your neighbour as yourself.” – The Bible (Mark 12:31)

So let us not forget that we are ALL the same. We all share a common humanity. We must try to love as we would want to be loved. Try to care, as we would like to be cared for. Try to understand, as we would want to be understood. Try to show the compassion that we would like to receive.

In the hope that little by little, kind word by kind word, small act by small act, we might help alleviate some more of the suffering and pain in this world – TOGETHER!

“Compassion asks us to go where it hurts, to enter into the places of pain, to share in brokenness, fear, confusion, and anguish. Compassion challenges us to cry out with those in misery, to mourn with those who are lonely, to weep with those in tears. Compassion requires us to be weak with the weak, vulnerable with the vulnerable, and powerless with the powerless. Compassion means full immersion in the condition of being human.” – Henri Nouwen

Perspective, Spinal CSF Leak

Embracing Simplicity

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“Out of clutter, find simplicity. From discord, find harmony. In the middle of difficulty lies opportunity.” – Albert Einstein

Over the past couple of years I have often felt like my life has been aggressively and almost completely stripped back. The core of my life is still much the same as it has always been. Yet I often feel like a tree that has been radically pruned. With so many of the branches of my identity and the things that I used to do being brutally chopped off and left to die. Leaving something quite exposed and bare, with many stubs where branches used to be.

When you spend most of your day lying down, and the time you can be upright is exceedingly limited by various intense and horrible neurological symptoms, you find that your life becomes extremely restricted. Everything becomes immensely simplified in many ways (even though there are also many complexities to contend with too). Life mainly consists of things you can do lying flat, or the few limited things you can do whilst upright – although still feeling very ill.

It’s been a very challenging journey to embrace a more simplistic life. 

It doesn’t help that we live in a society that often glorifies busyness!

Our Western society is full of people who often seem to wear badges of importance – based, in part, on how busy their life is. Most people are forever expressing how immensely busy they are. This makes it extra hard for those of us who are ill long term, because we have to instead embrace a new identity that can no longer be defined by our busyness. Suddenly we can feel somewhat detached from normal society – a bit of a ‘nobody’.

Everyone around us seems to be carrying on with their ‘normal lives’ whilst we feel like ours is stuck. 

We live in a never ending state of limbo, not knowing if or when it will change.


In my 2015 post Is Busyness a Choice? I spoke about an article by Scott Dannemiller called ‘Busy is a Sickness’. In it he wrote:

“… 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 really do believe that this is a massive problem for those of us who face long term debilitation. 

We not only have to take a very humbling journey of coming to terms with it ourselves; we will also often have to face others’ questions, attitudes, and sometimes prejudice – as well as naivety and ignorance – towards our disability and inability to do what we once could do.

We find that we begin to lose much of our identity, because it feels like we are not doing much anymore. Rather than being an active member of society – we feel pushed to the side lines, often misunderstood and sometimes even forgotten about.

We are suddenly not so sure who we really are any more and our condition begins to knock our confidence – until we perhaps no longer feel like we ‘fit in’ with normal society like we used to.

Over time, we realise that we have to go through a deep and painful process of grieving and letting go of who we once were. And much of what defined us. 

So that instead we can truly embrace who we are now – in this season. We actually have very little choice in the matter – if we cannot change our current circumstances ourselves then we have no option but to accept it and find a way to live the best life we can amidst all the restrictions.

I learnt over time that I had to stop torturing myself with what I could be doing IF I was well. I had to give up imagining how different life could be if I was healthy. I had to refuse to compare myself to what ‘normal’ people were doing and instead embrace the quieter and more simple life, of mainly being at home, often lying down. I had to see the opportunities that could be found here instead.

We must learn to establish a daily discipline of choosing to see the beauty and wonder in simplicity. To somehow embrace a simpler life. The more I go on that journey – the more I see that there are still so many things to be thankful for and enjoy here.

Despite the restriction, debilitation and pain. 

Really it is all a matter of perspective. As many things in life are. 

Attitude is everything! 

Since I have battled this chronic illness I have realised more than ever that we are often fed a lie by society and the media that our life should always be lovely, fun, immensely satisfying and great. Everything should be as perfect as it can be – and it will be – IF you have enough money, health, great jobs, nice homes, loving families, expensive holidays and up to date gadgets etc. Then we will all be perpetually happy.

BUT it’s just not true!

Hence why there are so many miserable, struggling people who actually have all those things in abundance. Sometimes it’s the people I know who have the most of all those things who are the least happy. Mainly because that mindset draws you into a never ending cycle of desiring more and more – which only leaves you increasingly discontented in the end. Because there is always someone around who seems to have a better lot in life and appears to be happier than you.


I have learnt so much through my two-year journey about trying to be more grateful for the small, everyday things, whilst learning to let go of ‘the dream’ of ‘normal living.’ In doing that (which is a very raw and painful grieving process) I learnt I could find so much joy and wonder here too. And if I can find it here, then I will be so much happier – as well as more content and thankful – when I do hopefully get well. If I can learn contentment without having all the things the media tells me I need – then I will be happier for a life time regardless of whether I stay sick or get well.

It’s a lesson I have also had to embrace with regards how I parent my children. It truly is heartbreaking when sickness robs you of being the parent you always desired and planned to be. It’s a very difficult thing to face and unfortunately you can find yourself envying other healthy normal parents, which doesn’t help.

When I experienced a complete physical and mental breakdown at the end of 2015, it was the grief of letting go of being the Mum I was and wanted to be that caused some of the deepest inner pain. I am so very thankful that my girls are now that bit older and slightly more independent, which makes things so much easier for us as a family. And yet currently I can’t go out with them or do most of the fun or even necessary things we used to do.

I really am currently stuck at home, mainly lying flat, nearly 24/7. 

However, I have also learnt that sometimes my kids can learn better life lessons from us facing this as a family than they could if life was just ‘normal’ and great. I realised that if I can’t find a way to truly live here, in the midst of the disappointments, then how can I help them to know how to face their own challenges and disappointments in life? They will certainly come at some point. If as a parent I can’t come through the crisis, then what does that teach them? But if my children can learn how to endure life trials – from me and my husband – then they will hopefully be much more stable and wholehearted adults.

Adults who can weather the storms of life and stick out long term relationships much better. Meaning they may well be happier and more fulfilled adults because of this. It will also hopefully help them to grow in compassion for others, so that they learn not to ignore or avoid another’s pain, but instead look at how they can share it and help support another in and through it.

Compassion is a stunningly beautiful quality to have. 

As my body is so restricted on the outside, I actually often feel the energy of what’s within intensify. It’s like there is this ball inside me with a mixture of so many different emotions. I know I have to redirect the ones that want to pull me into a dark place and allow the positive ones to become increasingly dominant. So I am trying to focus my own pain on connecting and helping others in theirs.

I have decided that I must find a way to live like this – so that I can help another walk through their own deep darkness of facing this condition or similar debilitation.

It’s allowing the love, grace and compassion that is within me to break out to help someone else. It’s channelling my hurt into feeling another’s pain with them so that I can then say, “How can I help you today? What advice can I give you from the lessons I have – sometimes painfully – learnt over the years.” 

These are some of the simple things in life that I can still embrace and still do. And it’s when I am focused on things such as these that I am drawn less into only seeing the negatives of my current predicament. It is then that I often find the beauty that is found in simplicity. And it reminds me that even if my body remains debilitated, on the inside I can still feel fully alive.

So let me embrace the wonders hidden in the simplicity of my current circumstances. Because if I can do that – in this place – I will hopefully discover a deeper contentment and satisfaction that may well last a lifetime as well. So that IF one day I can leave this whole immensely difficult season behind for good, I will at least have learnt more lessons and disciplines through it that will become the firm foundations of my life tomorrow.

So that although I have had to experience a major pruning and cutting back that has left me looking exposed and bare today, perhaps in the end it will simply leave room for growth that will allow new shoots to form tomorrow. Producing a stronger tree in the future that is happier, healthier and bears good fruit in the right season.

None of us know what tomorrow will bring. 

But if we can all learn and grow enough today, so that we can somehow find the inner strength to face whatever might be thrown at us tomorrow, we will be able to take our stand in the crisis and allow this cry to rise up from within us to say:

 “However bad this gets and however long it goes on for… I am determined to find the best life that can be lived here – in all its gloriously redefined simplicity.”

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

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

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

Breaking Free, Spinal CSF Leak, Suffering & Grief

The Shame of Chronic Illness and Pain

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‘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?

shame-quote-2

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!

shame-copy

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 ashamed that 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 ashamed every 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 ashamed when I can’t tell you that I have finished the fight, overcome, won and beaten this dreadful condition.

I feel ashamed that 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 ashamed telling 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!shame-quote-copy

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!

UPDATE: Please note that in August 2020 I was also diagnosed with arachnoiditis as well as a spinal CSF Leak – I now have radiological evidence to support both those diagnosis. To read more about the new diagnosis please see this link.

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

I have now written a follow up post to this one titled ‘Grapping With The Shame Having A Rare Invisible Illness‘.

For more posts about my story of living with a spinal CSF Leak please look at the subject heading on the menu bar above.

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.

Here is the link again to Dr Carroll’s video.

God & Spirituality, Identity, Spinal CSF Leak

Learning To BE

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Walk with me
Let’s forget the what-might-be
And slow to now.
– Speak Brother (Slow to Now)

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.

Learning to Be copy

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?

I believe it is. I write about it in this post.

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.

Learning to Be be still and know copy

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 out as 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.

You can listen to Speak Brother’s song ‘ Slow to Now’ here.

*Verse from the NIV translation of the Bible.  (The verse in image from Psalm 34:14 is from the NLT translation of the Bible). 

To read more about my 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.

Mental Health, Spinal CSF Leak

Breaking Through the Darkness

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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 be strong 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.

Breaking through the darkness copy

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.

Breaking through the darkness quote copy

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.

*Proverbs 13:12 from The Bible

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

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

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

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

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.

God & Spirituality, Suffering & Grief

Finding Peace In The Midst Of The Storm 

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

Do you ever crave true peace? 

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

We often don’t feel peaceful. 

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

Some days we feel like we are drowning in noise. 

Even in the silence. 

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

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

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

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

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

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

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

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

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

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

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

Bad things still happen. 

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

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

And all we can do is survive them. 

But is that all we can do? 

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

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

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

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

But it has. 

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

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

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

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

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

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

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

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

My condition is apparently complex. 

I have learnt that sometimes storms linger for a while. 

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

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

There are two things we can do.

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

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

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

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

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

But when I can say:

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

However, despite it all… 

MY GOD IS ALWAYS GOOD AND ALWAYS FAITHFUL.

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

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

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

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

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

You have to learn how to seek and find HIM. 

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

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

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

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

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

Identity, Suffering & Grief

The Beauty Revealed Through Brokenness

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

We can feel exposed and vulnerable. 

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

It’s hard. 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

It is painful but it is not without purpose. 

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

You can feel stretched beyond what you have ever known. 

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

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

It is not easy.  

But! 

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

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

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

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

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

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

For me it’s an ongoing journey of grace. 

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

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

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

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

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

I am not talking about physical beauty. 

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

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

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

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

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

But I know it is not without purpose. 

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

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

Even in times of pain. 

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

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

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

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

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

Identity

Is Busyness A Choice?

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Just stop and ponder this question for a moment.

Is busyness a choice?

What if we make it personal:

Is how busy I AM a choice?
Or is it an unchangeable fact of my life?

I have been thinking about writing about busyness for a while. At first I thought about adding it to my ‘Breaking Free!’ series and yet the more I thought about it, the more I kept coming back to these questions:

Is busyness actually choice?
How much control do we have over it?
Can I really ‘break free’ from it?
Do I want or need to ‘break free’ from it?

These are the type of questions I have been pondering and have asked myself on numerous occasions, especially since having kids.

Will this overwhelming, exhausting busyness ever stop?
The relentless do, do, do, go, go, go of life.

For years I have both thrived and have been exhausted by busyness.

My husband Matt and I are very driven and passionate about life. We live life with purpose, get involved with a lot of things, connect meaningfully with a lot of people and do not shy away from responsibility.

It’s in our nature to have a full life.
We love living life to the full!

But in at the start of 2015 things changed. I fell off a ladder and sustained a minor brain injury. And busyness began to happen around me rather than to me.

And
I struggled.

Enforced rest is hard. And it wasn’t fun rest either:
I couldn’t watch that movie.
I couldn’t read my favourite book.
I couldn’t listen to my favourite album.
I couldn’t go out for a meal with friends & family.

For about 3 months.
I mainly just had to lie there in a dark and quiet room feeling unwell.

Comparatively (to normality) I couldn’t DO anything.

Now if you know me personally, you will know I am a DOER. It’s in my nature to DO a lot of different things at the same time.

But suddenly I couldn’t

DO

And it was hard.
Really hard!

And at these moments the question flies around your head:

Who am I when I can’t really DO anything?

An interesting question in itself and something I will come back to later.

Even now, 5 months on from the accident, I am so much better and improving each week, but I still cannot rush about as I did before without feeling the impact. My head begins to get cloudy and dizzy and everything takes much more energy.

I cannot DO busyness, like I used to and it’s a challenge to me.

A couple of months ago, I read an article called ‘Busy Is a Sickness’ by a guy called Scott Dannemiller. It said a lot of what I had been thinking about for a while.

In it Scott discusses two types of busyness.

1. Busyness we can’t control: Which he writes primarily affects the poor because their economic reality simply does not allow for downtime. They have to work 2 or 3 jobs just to make ends meet.

2. Busyness we can control: Self-created stress. He writes, “Most of the time, I manufacture urgency in the hope that it will create urgency in others. Instead, it only creates anxiety, resentment and spite. Which is absolutely counter-productive. And even in the cases where the urgency is real, it’s often due to a packed schedule I created.”

Why do so many of us get caught up in a cycle of busyness that we can control and yet can often feel out of control?

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.”

He goes on to make the case that many of us can use busyness because ‘we are afraid of ourselves’. True quiet time can be a challenge and also very revealing – as we come face to face with ourselves and our own thoughts.

So busyness is very linked to our identity.
1. It helps us to feel like, and let others know, we are DOING something useful or important.
2. It can keep us distracted from facing ourselves and our thoughts.

Perhaps Busyness is a sickness of epidemic proportions!

“We are defined by what we do.” – Scott Dannemiller

So many of us often feel crazy busy. The irony is, we complain about it and yet we can simultaneously wear it as a badge of honour. We mention it to empathise with others, but it can then quickly become something we compete over.

It can be a reality.
But also an excuse.

Busy, busy, busy…. Rush, Rush, Rush!!

No wonder people want to:
Escape it.
Get away.
Drink it away.
Eat it away.
Medicate it away.
Self medicate it away.
Run away.

The pressure of life.
The realisation that life and responsibility is not easy.
That it involves a lot of hard work.
That it never seems to end.

The stress.
The worry.
The exhaustion.

Of all I need to DO!

The modern world we live in demands more and more of our time and attention as technology invades every part of our lives. Until our lives can feel out of our control.

It can feel overwhelming!

Yet do we have more control over it than we might think?

This is something I have increasingly thought about and my answer is, of course: Yes & No!

After 10 years of having children I know full well that having kids makes life hectic. You have these little people dependent on you 24/7 however tired, exhausted & in need of a break you are. When you have kids busyness is often an inevitability. Even holidays can be exhausting.

But there is still a lot of choices I make each day in how I use and view my time. Often:
I chose it,
I agreed to it.
I took on that job.
Said yes to that appointment.
Agreed to that meet up.
Answered my phone.
Took on that new responsibility.

So I must either accept the consequences of my choices, do it with a humble heart and increase my capacity – which is a good thing to do and something some of us need to learn to do more.

Or I have to decide to somehow change it, whilst maintaining my integrity and honouring my commitments wherever possible.

There is no point in complaining or getting bitter about the choices I have made.

If my busyness is out of control maybe I need to think carefully about my life and make different choices. Change may not be possible over night but there are always ways forward.

What about the times when busyness is not a choice?

Life will always bring seasons that feel uncontrollable. Things happen that we did not expect in our personal lives and jobs and the balance in our life quickly shifts to ‘unbearable’. Sometimes we just have to manage and find a way through a particularly exhausting season.

Matt and I faced this, at the start of the year. We had to quickly make a lot of changes when I was ill. Matt couldn’t DO it all on his own as I wrote about here.

It showed us that we could scale back when we needed to. We can say no and reevaluate what needs to change. Lessons I hope we will apply more in the future.

I have realised that I need to ‘break free’ from a busy mindset and its hold on my identity and discover a rhythm of life that works for me and my family.

Much of our busyness is a choice. We can get frustrated by it and yet we often choose it. Sometimes we can end up blaming others and get angry about it. And yet we have agreed to it or allowed the people around us, or our own mindsets, to influence it.

I know Matt and I will always live a ‘full life’ even amidst challenging seasons. But I have realised that I need to ‘break free’ from a busy mindset and its hold on my identity and discover a rhythm of life that works for me and my family.

A life rhythm that continues to thrive on a ‘full and purposeful life’ which will inevitably include a lot of hard work, generosity of time, sacrifice, commitment and responsibility. But one that does not pull us into a place that is consistently overwhelming and potentially damaging to our health, faith, marriage and family.

Busyness will take everything if we let it!

To end I wanted to again use Scott Dannemiller’s words because he says it so well.

“So my prayer today is this. That I stop defining myself by my doing, and start defining myself by my being. That I stop measuring time by the clock on the wall, and start measuring it by the experiences I share with those around me. And that I stop seeing my life as “busy,” and instead, see it for what it truly is.
Full.”

Do you think busyness is a choice or do you think of it as an inevitability?
How could you bring a better rhythm to your life and see busyness a different way?

I invite you to discuss or comment below, or on my social media links, I would love to hear what you think.

Family, Suffering & Grief

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

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

Those few days were a tough and exhausting journey.

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

Those few days opened my eyes.

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

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

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

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

Waiting.
Hoping.
Loving.
Holding on.
Surviving.

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

But our experience was far from normal.

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

wolken

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

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

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

And yet…

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

It was horrible.

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

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

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

She held me.

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

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

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

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

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

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

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

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

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

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