Tag Archives: Spinal Fluid Leak

Learning Patience: Eighteen Months of Spinal CSF Leak Recovery

“What doesn’t destroy me makes me stronger.”

 – Martin Luther King, Jr.

This timeless quote has certainly been my experience over the past four years or so of having – and then recovering from – a long term spinal CSF leak. Although, to be honest, at times it did feel like I was being ‘destroyed’ through the process. My journey has taken me to immensely dark places of wrestling and torment on so many levels.

It often felt like so much of who I was – at the deepest level – was simply being destroyed.

However, as I slowly recover physically, mentally and spiritually from the trauma of the last four years, I can see more and more how even what felt like ‘destruction’ has actually ultimately made me a more rounded, secure, loving and compassionate person. I have found that some things, and attitudes in my life, needed to be ‘destroyed’ or at least ‘shaken’, so that I could become the person I am now.

I am stronger on so many levels – but the strength comes from a more authentic place.

The strength comes from a deeper acceptance and acknowledgement of my human frailty and weakness. I no longer feel the need to have to ‘muster up’ an outward – or even ‘inner’ – show of strength to look like I ‘have it all together’. Instead, I can rest in my weakness and rely on God’s strength to carry me through the ongoing challenges of life in a more REAL way.

And there are ongoing challenges…

Eighteen months since my fourth high volume (40ml) lumbar epidural blood patch sealed my leak, I am still not back to where I was before my accident in January 2015.

My head, spine and nervous system still do not operate as they once did.

And yet…

Month by month I see more of the new ‘old me’ being restored.

Slowly… gently… patiently… Becky Hill is returning to a ‘fuller and deeper strength’.

But did you notice that I said the ‘NEW ‘old me’?

I had to add in that extra ‘new’ …. because the ‘old me’ doesn’t actually exist anymore in many ways!! And in fact I wouldn’t want to return fully to who I was before my accident anyway. Because there is a ‘new me’ that has emerged from the ‘wilderness cocoon’ I was catapulted into for those years. It is the ‘new me’ that will walk into the future and face whatever comes my way.

It is the ‘new me’ that is better in many ways than the ‘old’

However, the reason I am writing this article is to get into the nitty gritty of my experience of spinal CSF leak recovery. I want to continue to tell my story in the hope that it connects with and helps you, or someone you know, on their own seemingly impossible journey. I want to tell you the REAL tale of what it’s like to walk along such a difficult and desolate road, whilst attempting to keep focusing on the beautiful horizon of hope and redemption.

A new horizon that thankfully, for me, is growing ever closer.

So let’s get back to basics.

What is my life currently like day-to-day, eighteen months into recovery from a nearly three-year spinal fluid leak?

Corrie ten Boom said:

‘Worry does not empty tomorrow of sorrow; but it empties today of strength.’

That has had to be my ongoing ‘mantra’ throughout my illness and recovery. At first, fears for the future and fears of relapse consumed and crippled me. Unsurprisingly, of course, because – until this last blood patch – that had been my very real experience. These fears have reduced so much through a combination of learning to stay focused and thankful on the present, whilst accepting what IS today’s reality, and also seeing the progress that I continued to make day by day. I had to ‘throw myself’ into God’s arms of grace to find the strength to keep moving forward and keep trusting that things would keep improving.

As they currently do!

If you try and fight the slow process of recovery to ‘speed things up’, I found it simply makes you worse! Your body can’t handle the stress of the striving to do more than it can do. You instead have to ‘fight’ from an inner place of strength, peace and acceptance of the way things currently are, whilst being gentle with your body and mind as you trust for better days in the future.

The reality is, my head, spine and nervous system still struggles with hypersensitive reactions to changes in ICP (Intracranial (head/ spinal fluid) pressure). I still seem to have some ‘higher pressure’ issues in my head and spine (as I talk comprehensively about in my year of recovery update). The same old movements and actions still bring a clear reaction. My head, neck and spine fills with pressure, my ears pop and crackle, my cognition (mental processing) gets a little more sluggish, everything feels harder, and I often have to just take some ‘quiet time’ alone to still my head.

This might mean being silent for a bit, sitting down quietly or going for a quiet walk.

But I have to say that this becomes more and more manageable and less and less of a major problem. The adjustments needed are not so dramatic anymore. They are still there, but more subtle. And they thankfully keep improving. Over time you realise you are less aware of symptoms – they are still there but less and less prominent. They seem to impact things that little bit less week by week, month by month.

That’s when you feel like you are recovering more of the ‘old healthier’ you.

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Here are some of my personal ongoing symptoms and the way that I approach managing them. They may not be the same for others, but I share this to help educate other sufferers, their family and friends, and any medical professionals that may be reading this blog. This way, we can all show more understanding and compassion to one another and ourselves.

  • My head can still get very overwhelmed with a lot of things happening at once. It’s the ‘layering’ of things, one on top of another, that causes the biggest issue. Noise especially. My family and I are all natural singers so we love to have music on, and their default can be to sing along (singing can still be more of a challenge for my head). But I really struggle with both the music and others singing simultaneously – especially if there are other noises around too. It becomes a ‘mental overload’ for me, as does trying to think, listen, talk and cook at the same time. I often just can’t ‘compute’ it all as well as I used to. But this is also all improving over time.
  • Multi-tasking is slowly getting a little easier but is still a lot harder than it was before the accident. It’s again a ‘layering’ issue.
  • I can’t rush about, which although frustrating has actually taught me to ‘flow’ through life more calmly, and to be even more organised. I have to keep moving around gently without rushing about. My head and spine can’t take the twists and turns that rushing often brings. Also, moving around and talking a lot at the same time is still very hard. I can focus better if I stay still whilst talking.
  • Speaking for a long time can be hard still, especially if my head is already feeling more hypersensitive, or if I’m walking or moving about at the same time. I can talk for noticeably longer than I used to be able to though, which helps me with relationships in general, as well as with the mentoring and pastoral visits and teaching groups I do with church. I do find once I have talked for a while I often need some ‘quiet time’. My family know to let me be quiet, and I often put my headphones in and go for a walk, or focus on being quiet to still my head.
  • I still spend quite a lot of time being quiet at home doing the housework I can do, looking after my family and cooking. We love having people around for food, or to stay, so we are really enjoying re-discovering this joy of ours. I just have to plan everything well in advance to avoid any last minute stresses. I also love to cook for others who are struggling for any number of reasons (as people did for us when I was at my worst) so I often take food with me on visits to suffering people. I have been able to increase my ‘pastoral visits’ and the church admin that I do from home. I also continue to teach and speak in smaller groups and do a lot of ‘one-to-one’ personal development work with people. I am so very thankful to be able to take on what I can, when I can through our church, and this it fits in with our home life and me keeping on top of that.
  • Bending, lifting and turning my spine and neck still makes my head worse. I usually get a burst of pressure into my head that can take a little while of being calm and quiet to clear. Generally, the straighter I keep my spine the better. However, it does mean that I remain very careful with movement and what I carry. We still have a cleaner (who we employed when I was leaking) who comes for a couple of hours every two weeks to do hoovering, mopping and bathrooms, since this would involve at a lot of bending or lifting for me, and I avoid it where possible.
  • I am still very careful to always go on my knees or crouch instead of bending my back to get things from low down. This action is better for my head and also protects my spine (although it’s not as good for my poor knees. However, the garden kneeler I bought does help a bit with that in the kitchen and outside!!). But I’ve found that it’s just not worth pushing my spine and head. It’s too uncomfortable (sends pressure into my head) AND too much risk for me to see how much I can ‘push’ things safely. There are too many unknowns to take the risk, too many memories of multiple relapses. And treatment and recovery takes such a long time, if I was to relapse again. So I keep movement and general rehabilitation gentle and safe. I want to give my spine the best chance of full and lasting healing.
  • I can carry much heavier things than I used to (with clear self-imposed limits) but I avoid lifting them from low down and I always – by default – tend to carry things against my chest with both arms i.e. one ‘heavier’ shopping bag at a time. This seems to put less strain on my spine and so is better for my head and I guess protects my spine more too.
  • Bending my head to look down (i.e. to read, write or use my phone) is still uncomfortable and can send more of a ‘pressure rush’ into my head. But again, this is improving, and I am aware of it less than I used to be.
  • Sitting down for a while in one position can leave my spine and head full and my body very stiff, possibly linked to my spinal nerves and the pressure changes throughout my spine. So I still have to regularly get up and have a walk about.
  • If I sit down I am still better sitting on a harder surface with a very straight spine. Sitting on the sofa is especially bad for my head. If I’m watching a film or something of length, after about 30-45 mins my head can often feel fuller and cause me to yawn. I can feel very sleepy and my ears start to pop. I often have to get up and move around slowly to ease it a little. I can’t relax back on the sofa or lie down on it either – it’s too uncomfortable for my spine and head.
  • Going to the loo can still affect my head, I have to be very careful not to strain in any way. Even normal slight straining (just going for a wee) can still affect my head, especially first thing in the morning or if I’m trying to clear my bladder last thing at night.
  • When the pressure increases in my head, the tension and pressure in my neck, spine (particularly the bottom of the spine) tangibly increases as well. I feel it as a full pressure-like pain which is uncomfortable, but not unbearable.
  • In the mornings (especially but not exclusively) the feeling of pressure increasing in relation to action or movement can still occasionally make me want to cough, sneeze or even gag. It’s a bit like the sensation of having a ‘head cold’. This is especially true if I end up talking too excitedly OR too frustratedly (normally with difficult children :-)). It can also happen when I am getting ready and using more exertion to put on clothes and things like socks (even though I rest my foot on the end of the bed to avoid bending to do it). But it will normally subside reasonably quickly with some quiet and still time. It has also improved a lot recently.
  • The weather being rainy and stormy can make the above a bit worse (probably due to atmospheric pressure changes), as can having my monthly period.
  • I still have some light and noise sensitivity. Particularly to flashing lights, fast moving images (both of which can still feel overwhelming and make me feel nauseous) and listening to heavier music with a lot of drums and beats.
  • The worst times for my head result from increased stress, rushing or a lot, or talking a lot whilst doing things. I had an occasion a couple of weeks ago when I had to get ready for a church group that meets at our house weekly. Matt was away with work and one of my daughters was being persistently ‘difficult’ and talking frustratedly at me a lot. It completely overwhelmed my head, which quickly filled with pressure, and everything just felt so difficult to do until I could hardly think straight, or concentrate on anything, and simply felt tearful. In these situations I just know that I have to be completely silent to get what I need to done, then try and be as still and silent as I can until people arrive. But sometimes convincing my kids that I cannot deal with talking to them any more when they are already frustrated is the challenge. It took a little while of being very quiet but, by the time people arrived, my head could handle a bit more and I could lead the meeting OK. (Thankfully we began by listening to a recorded group Bible meditation for 10 minutes, so I got to be quiet – which helped settle my ‘full’ head too).
  • Sometimes a lot of talking, stress or attempting to rush can build the pressure and leave me feeling a bit sick and nauseous – like the above occasion did at first.
  • My general biological ‘coping mechanisms’ are still not what they once were. My body and head still cannot physically – and subsequently mentally – cope with and manage stress very well. I was always pretty good at coping with stress and pressured environments before my leak, but now I have to very carefully manage stress and anxiety because of the natural impact it has on ICP. (As I talk more about in my year of recovery update post). As with everything else though, this is thankfully improving slowly but surely.
  • The acute headaches I got post-blood patch whilst lying in bed – especially when I woke (that I mentioned in my year update) have improved a lot in the past two to three months. So I can thankfully generally stay in bed, even if I wake in the middle of the night or early morning, rather than having to get up at crazy hours. But I still often feel uncomfortable and have a milder headache, or my head will especially feel strangely ‘full’ (sometimes it’s still a bit worse and I just have to get up). So I don’t really do ‘lie ins’ and I still NEVER lie down in the daytime. My sleep can fluctuate a bit too, although I tend to have really good times followed by more wakeful times. But that is normal for many people anyway.
  • I am now medication free! About 3 months ago I finished weaning myself fully off the last of my Nortriptyline prescribed for neurological pain. I believe taking it somewhat helped some of the higher pressure symptoms from a couple of months after the last blood patch in September 2017, but more recently I wasn’t sure it was doing much, and I was tired of the constant dry mouth. Coming off it slowly didn’t seem make any significant difference to my symptoms, apart from I no longer have to drink as much in the night or early morning, or chew gum constantly to deal with the dry mouth. Interestingly, though, when my head pressure increases, the dryness in my mouth can return too.
  • My heart finally seems to beat pretty normally again these days. This took a long while to settle from the constant mis-beats and irregularities that a previous ECG confirmed (but were considered annoying but not concerning medically) when I was leaking badly during the summer of 2017. My leak definitely seemed to affect my heart, and then the increasingly poor conditioning probably made the issues worse. Even after successful treatment, this took a long time to gradually get better. All the strange beating patterns made lying down and relaxing harder at first, as they were more prominent when lying down. And this all added to the anxious feelings at the time. So life is more restful not having this problem anymore.
  • I have had to learn to live and ‘flow’ from more of a place of ‘inner peace and rest’. I am learning a whole new, more peaceful and less chaotic and busy ‘way of life’. I have embraced the lessons learnt from this over the past years and vow to maintain a more restful balance in my life moving forward. I want to resist falling back into a more ‘busy or chaotic life’ in the future, even when I can cope with those pressures more. Living from a place of ‘spiritual peace and rest’ is the best way to live long term.
  • I still find long, gentle walking helps my body, head and mind – as well as my connection to God. So I still generally take two approx. 20-50mins walks a day, when I can. I appreciate the surrounding countryside so much more since my years of debilitation. My pace has also picked up a lot in the past year, but I still cannot rush.
  • Filling my mind with positive, calming, spiritual thoughts is so important to enable me to live from a place of increasing peace, rest and love.  I am enjoying using this new peaceful Christian meditation app to help with this (mainly whilst walking or quietly doing housework) www.soultime.com. It’s a great resource to bring more peace, rest, calmness, love and spiritual connection into my day. I also love more peaceful contemporary Christian worship music but generally have to avoid louder heavier music.

So that is a summary of some aspects of my day to day life and the ongoing challenges of recovering from such a life-changing injury.

People often ask me these days …

‘Do you think you will ever get back to feeling ‘normal’ like you did before all this?’

I have learnt to answer honestly…

‘I simply don’t know’.

Perhaps only time will tell!

But my hope and faith rests in God alone and in the fact that I do see so many ongoing improvements all the time. Yes, they are slow, often so very gradual, and sometimes frustratingly subtle in the short term. And yet, as we look back we can see the MASSIVE changes in the past year, and even in what I can do and cope with over the past six, or even the past three, months. That is the hope of continual improvement we hold onto.

When you can keep seeing change it does encourage you to never give up believing for better times ahead.

When I was obviously leaking, we would, at times, also see very slow, gradual improvements. But any improvement would ALWAYS seem to plateau in the end. I would always reach a kind of ‘lid’ that I couldn’t break through. And even if things remained a bit better for a while (especially after treatment) in the end they would always regress or I would fully relapse again weeks or months later due to clear or unclear triggers.

So, seemingly having no ‘lid’ to my ongoing improvement brings us so much encouragement for the future. 

So again I want to share my hope with you all.

It’s a clear hope for the future but mixed with realism about the journey. My journey has been made somewhat easier in that my family never relied on me bringing in an income of my own. Thankfully my husband’s salary covers our family’s living expenses. My ‘church work’ is voluntary – which has actually been beautifully freeing because I can balance it all with the general demands and pressures of family life.

Had I had to try and get back to a demanding career, or had we been reliant on me getting back to earning a wage, we know that it would have made my recovery and our family’s lives unbearably chaotic and perhaps impossible. The reality is, even now I know I couldn’t function working full or even part time in a busy and intense job or career. It’s important that people are aware of this as a potential longer term consequence of living with a spinal fluid leak followed by walking the slow and complex road to recovery.

It is not as simple as ‘being fixed’ then quickly ‘getting your life back’!!

Life may now look very different to what it did before – long term.

And yet, we are all different…

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Our stories and experiences will be different. Each of us has to learn to work it all through as best we can with the lives we currently live. Some people may find that they can give more time and energy to re-discovering a job or career, especially if they don’t have so much responsibility around the home and family, and if they have a very understanding employer that is aware of their limitations and their need for a quieter work environment. It’s a balancing act and will take much wisdom to find creative ways to embrace what you can do, whilst being very aware of the limitations and sometimes unknowable risks of what you can’t.

This all takes a certain level of acceptance in finding true peace about your ongoing limitations.

So my deepest prayer for all of us is this…

That we may all receive more of God’s grace and strength to find the way through the unique storms, and sometimes living nightmares, that this broken world throws at us. Your story might have some parallels with mine – or it might be completely different! However, despite the differences, ALL of our stories are powerful. So please consider who your own story might help – today, or tomorrow.

And please don’t suffer in silence!

Speak up, get the help and support you need, and then maybe you can BE help and support for someone else.

Because you never quite know what a difference your seemingly ‘boring’ tale of suffering and pain might have in the life of another desperate, struggling and often lonely soul. You never know what your REAL tale of living in and rising from the ruins of destruction might mean to someone else who currently feels so trapped and destroyed by their seemingly never-ending struggle.

As I was reminded recently in these profound words;

“Your story is the key that can unlock someone else’s prison.”


Please do comment or ask any questions below. Or alternatively you can email me at beckyhillblog@outlook.com

To read more about my story of living with and recovering from 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.

Here is a medical journal publication about rebound intracranial hypertension (rebound high pressure) as a short or long term complication following epidural blood patching – as I seemingly experienced at least after my last three blood patches. 

Please see this new May 2018 medical paper about the 10 most common myths and misperceptions about spinal CSF leaks. It is by some of the top world experts in treating this condition. I was told so many of these myths by various neurologists, anaesthetists, radiologists and many other doctors during my lengthy and traumatic nearly 3 year battle with a spinal CSF leak. This kind of misinformation caused many delays, misunderstandings and great distress on my already immensely long winded and very difficult medical journey.

Rising Again: My Year Of Spinal CSF Leak Recovery

“Time is not really spent. Instead, it is invested in a future we cannot see.” – Alicia Britt Chloe

When I read this quote recently in Alicia’s book ‘Anonymous’ it resonated with my perspective on life. Our time on this earth should not simply be ‘spent’ and should certainly not be ‘wasted’. Instead, all of our time is an investment for a future we cannot yet see – whether it’s intentional ‘learning or doing’, time invested in family and relationships, or facing a set of circumstances which force us to use our time in a new or unforeseen way.

If we can see like this, then we can know that nothing needs to be wasted. Everywhere our life takes us – both the good and bad – is an opportunity to learn, grow and invest into who we are becoming. It’s also an investment into who those we parent, lead and influence are becoming.

All life’s circumstances are opportunities to invest in the future – whether it’s ours, or others around us.

That’s how I’ve had to see the last four years of my life. Most of the first three were spent battling a debilitating spinal CSF leak, and the last has been all about investing in my recovery. Which has again required great patience, raw resilience and immense endurance.

The pathway of recovery, after a long term spinal fluid leak, is often a long, arduous and immensely slow process – even after successful treatment.

The wonderful news is that – a year on from my successful 4th blind lumbar (40ml) epidural blood patch (EBP) – I am doing comparatively well. I have been upright all day every day since mid December 2017 (some days recently that is from 4am – 11pm!! If I happen to wake up early and have to get up due to ‘lying down’ headaches).

I can walk for miles, happily drive locally, get a lot done at home and look after my children (now 11 & 13). I can cook & bake for our family and others, spend quality time with people, go on holiday, and invest increasing time in my life-calling of pastoring and helping hurting people, in and through our local church. This is currently mainly through a lot of one-to-one mentoring and personal development time with others, as well as teaching in small group settings. I also do bits of admin for our church. Thankfully this is all flexible and I can do what I can, when I can, without any added pressures.

I have so very much to be abundantly grateful for. Last year I was acutely unwell and utterly debilitated – initially by the spinal fluid leak, then subsequently by severe post-treatment rebound high pressure symptoms. For four months over the summer of 2017 I had to lie down flat nearly all day, every day, and could only manage an exhausting 10-30mins upright at a time. Then after my EBP I just had a pretty much constant debilitating non-positional headache – amidst many other symptoms (as I talk about in this post) – for months. It is hard to explain how extremely unwell you are with both those conditions, and how confusing it is to work out which is which after treatment.

They are both truly awful to endure!

The road to full healing, even after successful treatment, is not an easy one at all. After a while, you can see that you are making some progress – albeit slow – in moving up the mountainside from the darkness of the valley below. But even the mountain climb of recovery is utterly exhausting in so many ways. It continues to take so much endurance, patience and resilience to scale the never ending rocky slopes.

But I am getting there….

In the light of how ill I was for so long – I am doing exceedingly well! I haven’t been this well since my accident in January 2015. In the light of how healthy and busy I was before my accident – and the onset of the leak – I am still not fully well. But I’m increasingly heading in the right direction.

How ‘well’ I am now is all a matter of perspective. I have to keep focusing on the wonder of how far I have come and the fact that I can easily be upright all day, which is a small miracle to me. So I must embrace all I can do – which is comparatively a lot – and not resent or get frustrated with what I can’t!

The slowness of my recovery can certainly feel frustrating at times – to say the least. Who doesn’t want to get back to full health and be able to embrace more of the life they once knew? And yet I’ve begun to learn and see more of the wisdom that can be found in the slowness. It’s not just my body that needs to heal physically – I (and my whole family) have needed to heal holistically, in so many different areas.

Having lived with a chronic debilitating neurological illness for years, and then experiencing the slow process of holistic recovery, I believe in some ways the whole journey through illness, healing and recovery can be viewed in a similar way to grief. It’s a journey, a passage, we walk through. It’s not something we experience one day, then ‘get over’ it the next. It lives with us as we attempt to move forward with our life. We have to wholeheartedly face, embrace, and walk through what we discover on the journey of sickness and healing – whether traumatic, painful or beautiful. We must give it the time and attention needed to move ‘through’ it, as well as we can, and find more lasting healing in every way.

My mind, emotions, memories, and soul need healing just as much as my physical body. They have needed to find increasing restoration, fresh confidence and new freedom.

You can’t ‘rush’ holistic healing!

It’s a process of working through complex and traumatic memories, emotions and thoughts. Unless you’ve walked the spinal CSF leak road, or a similar long term debilitating illness, you may not understand the trauma involved at every stage. Simply the daily holistic trauma of living with the illness itself is enough. When ‘leaking’, simply being ‘upright’ is often utterly traumatic for our bodies, brains and minds. Then add in the trauma of trying to seek medical help and support for a condition that very few doctors really understand (IF you can get diagnosed and ‘believed’ – that is). And add to that the mental and emotional trauma of being so debilitated and unable to function, anything like normally, in the short and long term. With this combination you can see that there is a lot to work through – as I write about in one of my most widely read posts, Living With a Spinal CSF Leak.

Sometimes it’s not until you start getting well that you actually realise how exceedingly unwell you truly were for so long. This is traumatic in its own way. The fear of going back there again can be overwhelmingly crippling – especially in light of how long recovery takes. This isn’t helped when, like in my own case, multiple major relapses have been your very real past experience. Moving on from the fear of relapsing again is so very difficult. True freedom from this fear can only come slowly, as your confidence builds with the longer you go without getting worse again. These fears can also leave us completely confused and unsure of what we should allow our body to do or not do.

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On a purely physical level, I have also discovered that, after years of leaking spinal fluid from your spine, your whole nervous, and intracranial pressure, system seems to be completely messed up!! Over the months and years of leaking I have become hypersensitive to even the smallest pressure changes in my head and spine. These physical ailments added immensely to the struggle to cope with even small amounts of stress and anxiety whilst leaking and during recovery. This is due to stress and anxiety naturally affecting intracranial pressure anyway, meaning that the physical, mental and emotional become even more intrinsically linked. Even more so because any heightened emotion, especially crying and laughing (or raising your voice in excitement, passion or anger), are brutal on our already hypersensitive heads.

I found the only way to try and deal with all this was by learning to stay as calm, peaceful and quiet as possible. (I already experienced this from leaking – as can be read in this article). This means we have to avoid stressful and anxiety inducing situations when we can – whilst ‘leaking’ and especially in the early months of recovery – which is not easy when we are trying to holistically manage and recover from a debilitating illness, still have to deal with medical professionals and hospitals, and have a family and home to look after (at the very least). It would be even harder if I had had to try and go back to any of a massive spectrum of jobs and careers which do not allow an abundance of time for calm and quiet individual activity. I cannot ‘multi-task’ anything like I used to be able to. Such things are still often way too overwhelming for my current cognitive capacity – although still obviously improving. Even now I also still struggle to ‘rush about’, especially in ‘busy’ or ‘bustling’ environments (even more so if I have to talk to and interact with others as well) so I have to try and maintain more order and calm throughout my life than most people.

Initially, even simply doing more ‘normal’ things again – like going to shops or being in an environment with lots of people – can induce anxiety. As it would for anyone recovering from a long term, previously debilitating, medical (especially a neurological condition). However, this then perpetuates itself because we are already so hypersensitive and thus prone to such things. These environments are already ‘taxing’ on our ‘foggy’ heads because of all the overload of mental stimulation. But having to interact with people and talk a lot can also soon leave our heads even more full of pressure and thus struggling to concentrate and cognitively process what is happening and how we need to respond. So we have to be careful about how much we subject our heads to.

This unfortunately meant I often found myself ‘avoiding people’ at times – especially for the first few months of recovery. This was truly heartbreaking for me because I really do love people and like to talk to them about their lives. But talking, for even short periods of time, would simply make my head worse. Although this has very much improved overtime, my head getting worse from simply talking can still regularly be an issue.

The other key problem with our recovery is that to improve our physical conditioning we have to exercise. But exercise involves exertion, which is another trigger for the higher pressure hypersensitivity. So again it’s a vicious cycle. After the first awful couple of months post-treatment when I still couldn’t walk far at all, I subsequently found that gentle, and initially slow, walking often helped my head more than trying to rest lying down or reclined. Since early December ‘17, I decided to keep my body upright all day and quickly increased the amount I walked up to an average of 3-5 miles a day over 2-4 separate walks. The walks started off very slowly – but my pace slowly increased as my head and spine improved. Long walks – alone – also gave me, and still give me, the much needed space to calm and relax my body and mind, as well as improve any anxiety and my general conditioning. Walking is also very liberating after the many months over the past few years I couldn’t really leave the house.

I did discover that walking was much easier on my head if I walked quietly (or normally listening to something uplifting, inspiring and calming on my smartphone) on my own. Due to the increased breath use – walking and talking at the same time are more of a challenge. I can walk much further more easily on my own than with others. Similarly, I can also get more done at home when I am not required to talk at the same time. Moving about a lot and talking (especially more loudly) can be a bad combination for my head. Although this slowly gets better over time.

Rising Again copy

Other ongoing physical symptoms include varying head pressure often felt mostly in the lower forehead and especially around and behind the eyes when worse. (When particularly bad it can feel like your eyes might burst out of your head). But I can also feel pressure in the occipital region (bottom of skull/ top of spine) and down the spine (especially in the lower lumbar spine). But it’s a slightly different sensation to ‘low pressure’ (leaking) occipital/ neck ‘pulling’ headache. Although harder to differentiate in the early days of recovery.

The main difference that slowly becomes clearer (after much initial confusion) with this ‘higher pressure’ type of pain is – rather than increasingly getting worse throughout the day (or even over a short period of time being upright) – like it did when obviously leaking, it tends to instead come and go at various points in the day according to what is setting off the ‘hypersensitivity’ at that time. Even now, it can still get worse until my head feels full, my ears crackle and pop and sometimes it makes me yawn a lot and feel rather sleepy – especially due to the pressure behind and around the eyes. It can also make me feel slightly shaky, rather detached from the real world, my vision can get slightly blurry, my cognitive processing gets a bit more sluggish, I can occasionally feel a bit nauseous (in the early weeks after my EBP it could often make me physically gag) and my heart can beat noticeably faster. Hence adding to an ‘anxious’ feeling. But this normally gets better again if I spend some time staying upright but being quiet, calm, keeping my spine straighter and move about more gently and slowly. If it gets too bad – often a quiet walk or sitting quietly for a bit helps.

The other main difference to ‘low pressure headaches’ is that it doesn’t get better lying down – although lying down may still rest your body somewhat – hence the confusion. I never lie down in the day anymore because it tends to make my head worse. However, all of these kind of reactions mentioned above are slowly getting less acute or intense and much more manageable as recovery improves.

Waking up in the mornings can also still be problematic at times because of the lying down. I still often (most days) have increasing headaches around and behind my eyes and in my lower forehead, and can sometimes feel slightly nauseous soon after I wake up (this is especially prominent if I try and stay in bed too long once awake). Unlike when ‘leaking’ – I subsequently find that I must get up once I have been awake a little while – whatever time it is. I am known to get up anytime from between 3:30am-8:30am depending on the day and when I happen to wake up (unless the 6:30am alarm on school days wakes me first). Once I do get up the main headache goes away quite quickly these days – although my head and spine can remain feeling strangely ‘full’ but without obvious pain. (In the initial weeks after my blood patch, the headache wouldn’t always ease much getting up – at least at first. I think the exertion of getting up and interacting/ talking with my family would complicate it and I could often feel very unwell and often feel sick and gag from trying to ‘do things’. So then I would then try and lie down again to be still and quiet – but would end up still feeling very ill and then simply continue to physically gag from the nausea and increasing pain from lying down (which simply adds to the exertion headache – perpetuating everything). It’s tormentingly confusing and very hard to get relief in any position in the early days of recovery. Medication (initally acatezolomide, then after 2 months a switch to nortriptyline, in my case) can help some of the underlying problem or pain. But not necessarily the hypersensitive reactions to changes in intracranial pressure. Which is why it is so utterly confusing and brutal on your mental health – which adds to the anxiety we are already prone to – as I write about here in my 6 month post patch update).

Bending my neck down to read, whilst walking or to look at things (like my smartphone), or bending my spine to do things – tends to also obviously increase the pressure in my head and make my ears feel full and pop. As does carrying moderately heavy things. So I am still super careful and gentle with movements involving my spine. I just can’t be sure that it’s OK to lift and bend much still, so I still self-impose many post-EBP style restrictions and tend to always kneel first to pick things up off the floor, unload the dishwasher or put washing in, or take it out, of the machine. Over time I have gently allowed my spine to bend and lift a bit more – but only very carefully and cautiously.

During my years of leaking and my experiences of rebound high pressure (post treatment) I always found sitting down would tend to increase the pressure in my head/ spine or increase my leak symptoms when leaking. So I used to stand a lot more when upright. This has improved so much and I can sit for longer and longer, but it is often still harder for me to sit (relaxed) for longer periods of time (the sofa can be the worst place due to the softness of the seat). I actually find I am better sitting with my back very straight and legs bent directly in front, with the soles of my feet touching the floor. Slouching, leaning back too far or putting my feet up is no good, at all, for my head or spine.

I know the sitting issues have also been aggravated too by the general ongoing tension up my spine. I personally hypothesise that much of this is probably down to the higher pressure/ higher volume of spinal fluid pushing against my nerve roots. But it’s obviously also linked to the years of pain and physical tension in my head and spine and also the lack of natural movement. It’s hard to know how to combat this much whilst still restricting movement. It improves little by little and lots of walking and the general rehabilitation of doing things around the house and going shopping (limiting how much is carried) etc helps it a lot, thankfully. But I have found that this can’t really be overcome by trying to ‘force it better’. Gentle movement and gentle lifting, whilst remaining very patient with regards to ongoing ‘pressure issues’ is so important. I just have to listen to my body and head. Trying to ‘push myself’ and rush this process of less pain and tension in my head and down my spine can just lead to relapse and in hindsight has probably contributed to my own before.

(In hindsight, I now think that I experienced rebound high pressure symptoms at least after my second (11 months post leak onset) and third blood patches (15 months in – when I was also treated with acetazolomide) but I always got worse again many weeks to months later. I do not know if I was also still leaking a bit too after any of my patches (apart from a bit after the first perhaps) or what exactly brought on the consistent obvious major relapses. (Apart from when I fell over again badly in May 2017). I always got much better after blind lumbar high volume EBP and could spend much more time upright – often all day – over the following weeks and months – but was never symptom free. But it’s all FAR too confusing to say for sure and the confusion only gets harder the longer you have been leaking. Medical professionals in the UK normally do not understand these medical conditions enough to support you well eitherWhich makes living through it immensely hard and another challenging battle to fight, whilst you are utterly exhausted and acutely hypersensitive to stress and anxiety anyway. This all contributed to a major crisis in my own mental health (see Breaking Through the Darkness), including acute suicidal ideation, 2 months after my second EBP. This almost reoccurred again 2 months after the 4th patch that sealed me, as I try to describe in my 6 month post patch update). 

Rising Again quote copy

However, regardless of all the immense and overwhelming challenges of living with a ‘leak’ for so long and now enduring the slow recovery process…

There is still so much from the past few years to treasure!

So it’s that which I want to focus on to finish…

Beauty can become even more beautiful once you have tasted of deep pain and debilitation – a theme that I wrote about in ‘Suffering into a Deeper Spiritual Awakening’. I have certainly learnt more about what truly matters in life. I see and notice beauty even more clearly around me – throughout creation and in other people. My heart is so much more tender and compassionate. I truly FEEL others pain much more deeply than I used to. My understanding of other people’s struggles is so much more profound.

If I could go back and had the choice to have or not have the leak – of course in so many ways I wish we had never had to walk through such an awfully traumatic and exhausting season in life.

And yet…

I would never want give up the beautiful lessons learnt or the wonderful people met. I could not deny the privilege of experiencing the depth of the valley of darkness – whilst actually being able to rise and recover again, as I hopefully increasingly move up towards more heights of better health. It has changed and increased the capacity of my heart in ways that I cannot even begin to fully explain. It has stretched my limited perspective and expanded my horizons. It has changed how I see and relate to others and deepened my love – for God and all people.

So with hindsight would I choose to personally go through such a desolate season of pain and suffering – because of what can be learnt and gained?

If I could have known, in advance, what the never-ending, deeply dark, valley entailed, I could not have chosen that road for myself or my family. Nor would I choose for anyone else to go through it either. Which is why I continue to raise awareness about the realities of living with the condition. In the hope that others will not have to suffer as deeply and as long as I have.

But… I would choose the new heights of beauty discovered in and from the depths of pain. Because they have transformed me for the better. They have brought holistic growth and resilience in ways I could never have achieved without going through such a raw deep struggle. I have also been able to connect and help others going through the same hell that I had to.

I have honestly been utterly shattered and broken by the past few years – in so many different ways.

And yet…

To be ‘broken and shattered’ is not always a bad thing long term. It strips you back, shows you what is truly important and gives you a new perspective on life and love. We can then hopefully one day, perhaps one day, become even more stable, loving, humble, understanding and holistically healthy people in the end. Until we can truly see that the years of pain become an investment for a better future – all round – that we previously could not see.

So for all those still suffering immensely with these awful conditions. I honestly feel the depths of your never-ending pain with you – but please take heart! And do not give up hope! Last year I wasn’t sure I could or would ever be well. I wasn’t sure that I had the strength left to make it through another day of fighting on so many different levels. I had again reached the absolute end of myself. But my journey shows that we really do not know what tomorrow might bring. That is why I have wanted to tell you my own story. In the hope that we will keep holding on and hoping for a better future – we cannot yet see – together.

“Only if you have been in the deepest valley, can you ever know how magnificent it is to be on the highest mountain.” – Richard M. Nixon

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Our family on a beautiful and very blessed holiday (fully upright!!!) in Weymouth, UK, July 2018! (Which we had to cancel in 2017 due to a complete relapse of my chronic spinal CSF Leak). Our children Aimee and Beth were 7 & 10 when this nightmare began and our lives completely changed, they are now 11 & 13.


Please do comment or ask any questions below. Or alternatively you can email me at beckyhillblog@outlook.com

To read more about my story of living with and recovering from 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.

Here is a medical journal publication about rebound intracranial hypertension (rebound high pressure) as a complication of epidural blood patching. 

Please see this new May 2018 medical paper about the 10 most common myths and misperceptions about spinal CSF leaks. It is by some of the top world experts in treating this condition. I was told so many of these myths by various neurologists, anaesthetists, radiologists and many other doctors during my lengthy and traumatic nearly 3 year battle with a spinal CSF leak. This kind of misinformation caused many delays, misunderstandings and great distress on my already immensely long winded and difficult medical journey.

Embracing Simplicity

“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.

What Is Within Us Is Who We really are. 

Over the past two years whilst my body has not been working properly, I have had to learn that what’s inside me, who I am within, is far more important than what is seen on the outside. 

On the outside my body is currently broken and debilitated by my spinal fluid leak. But I am increasingly learning that it’s what is on the inside that truly counts. 

So even though I am currently struggling to change the limitations of my physical body, I know I can still develop the person on the inside of me, whatever is happening on the outside.

This means focusing on feeding what is inside of me with good thoughts, words, inspiration and ideas. Having the wisdom to know how to cultivate the good parts, then allowing the positives (as well as the stark reality of the difficulties) to break out through my writing and in my communication with others.

That is why words are so precious to me. 

That is why writing is a wonderful gift, because it allows me to try to express the inexpressible. It allows something of what is on the inside to break out to speak and connect with others.

Last night, I was trying to describe to my husband Matt how, whilst my body is stuck lying flat nearly all day, it feels like what is deep inside of me keeps intensifying. Even the pain and struggle of this season fuels this ball of passion inside of me, a force that I want to be characterised mostly by love, compassion and grace, and yet still have the rawness and reality that comes with our natural human weakness. And I have certainly become more aware than ever of my weaknesses over the past two years.

I believe suffering brings a whole host of deep feelings inside of us. Some are good; it can develop more humility, more understanding of others pain, more compassion for those hurting, more personal resilience and strength. But on the not so good side; suffering can also draw us inside ourselves, we can easily become self absorbed and left sinking into a pit of self pity and despair that becomes extremely hard to climb out of.

All extremes of feeling and thought come at me daily. Some days and sometimes it takes all my might to redirect the negatives. Sometimes it feels almost impossible to stop them overcoming me. I can have many moments of tears and emotional/ mental exhaustion.

Yet I know I have to fiercely guard my heart and mind and protect what is inside of me. Every day I have to choose carefully what to fill my mind with. Every day I have to be ruthless in taking control of my thoughts. Every day I must make myself see the beauty and wonder that is still always around us.

“Guard your heart above all else, for it determines the course of your life.” – ‭‭A Proverb‬*

I must keep choosing to see outside of myself and look at how I can contribute positively to the world around me. I must stir up the wonder of what is inside of me, until it breaks out in and through my words and actions in the form of love, grace, compassion and fighting with, and for justice for, other people.

For me what is inside is intrinsically linked to my spiritual faith. You cannot separate the two. That is what inspires my many words!

It is through spiritually inspired words, thoughts and ideas that I feed the good parts of what is within. It is only in and through my love for God and other people that I personally can and will find a way to live like this, for as long as I have to. It is God’s Spirit that lives on the inside of me, that is at the heart of the ball of passion and love that inspires and creates the words that I speak and share.

It is God who leads me through this dry and desolate land and helps me to change the way that I think. Through His words, truth and other people’s wisdom, kindness and love, I can cultivate what is on the inside of me so that the good stuff can grow.


Some people must wonder how I can still love and trust in a loving creator God, when I am stuck with this cruel debilitating physical condition. But for me, I just don’t know how to live without him. I have wrestled through many questions and thought through the whys, as I wrote about in Why Me? The Soul Destroying Question.  And yet sometimes we have to just let go of the whys and instead focus on what we do know.

I know more than ever that God is alive within me and that he fills me with his peace and love. Even while there is seeming desolation on the outside….

Deep within me there is a whole other world. 

I want to discover more of the incredible beauty of that deep potential within me. A place that has been made raw and real by suffering and pain. And yet a place that is made beautiful and tender by unconditional love. So that I can dive even deeper inside me to find what can touch another deeply inside of them as well.

I don’t want to settle for just surface connection with others. Instead, I want to reach out and connect with another’s heart. I want to honestly meet them there, in their deep reality of both joy and pain.

So I need to do all that I can to keep being filled with inspiration. One way I do this is to read various ‘devotions/ inspirations’ on my You Version Bible app each day. Those words of inspiration by various authors, when added to the truth and beauty of Biblical words, feed my spirit and soul and re-balance my thoughts and emotions.

Some days when I open my Bible app to read God’s words, I am like someone who has not eaten for a while, desperate for some sustenance, craving more deep satisfaction.

I can often wake up in the morning and suddenly remember the reality of my current life and discouragement and despair can begin to try and seep into my mind and heart. It’s then more than ever that I know I need some deep inspiration from God to hang my perspective on again, as I start my day.

“But if I say I’ll never mention the Lord or speak in his name, his word burns in my heart like a fire. It’s like a fire in my bones! I am worn out trying to hold it in! I can’t do it!” – ‭‭Jeremiah‬ ‭20:9‬, The Bible

When I take the time to invest in filling myself with good words, they increasingly burn within me. They are like fuel that keeps the inside aglow. It’s only if I put the right inspiration within me that the right inspiration will come out of me.

I really do love and value words so much.

  • Because words are what connect us all together.
  • Words are what communicate from what is within us.
  • Words are what encourage and inspire us in the hard times.

So I have decided that whilst the never ending battles continue on a physical level, I want what is on the inside of me to tell a very different story. An adventure that probably won’t be seen much from the outside. But if you listen carefully you will still hear something about it. As I use words to attempt to describe to you what is truly going on deep within my soul.

 “You cannot kindle a fire in any other heart until it is burning within your own.” Eleanor Doan


*Proverbs ‭4:23‬ ‭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.

Facing Disappointment After Disappointment But Pressing On Regardless…

“True hope is honest. It allows a person to believe that even when she falls down and the worst has happened, still she has not reached the end of the road. She can stand up and continue.” – Philip Yancey

I’ve now been on the roller coaster of chronic illness and pain (with a spinal CSF Leak) for nearly 2 1/2 years. During that time I have been almost fully bed bound for months at a time, then for many other months I have been able to live a part normal life where I can be upright enough hours to get the basics done at least.

I have not had one day feeling fully well for those 2 1/2 years.

It’s been tough!

I can hardly remember what it feels like to feel healthy or live normally. To be able to make plans trusting I can go through with them. To not be on this daily treadmill of dealing with the multitude of restrictions and limitations. Whilst simultaneously having to be extremely patient, letting go of what I can’t change and trying my best to stay thankful for all the good parts of life too.

Following about a year of slightly more manageable symptoms. Last week I tripped and fell flat onto the pavement, and within 24 hours of that fall it became obvious that the very minor accident had caused a complete relapse of my CSF Leak symptoms, leaving me again stuck in bed/ lying fully flat for over 22 hours a day.

And it’s honestly so disappointing.
Going backwards again instead of forwards.
To again be struck by the full force of this cruel condition.

The roller coaster is exhausting. It can take months and months to see any improvement in this condition then in one moment, in one misplaced step….

BOOM!

I am back to where I started.

And it is honestly wearing me out!

These are the words I wrote a day after the new fall, as it became clear that I was facing another big symptom relapse….

Every time I face a setback my heart sinks.
Every time I get worse again, I remember how good I had it last week when I was slightly better.
Every time I want to give up, I know I can’t, I have no choice but to keep on going.
Every time I want to sob and sob, to let it all out, but soon realise I shouldn’t because it will only make my symptoms worse.
Every time I picture the life I can’t live and have to let it go again.
Every time I hope for better days but worse days come instead.
Every time it tortures my motherhood that I can’t be the Mum I want to be.
Every time I can’t help my husband look after our home or do everything I want to for and with my children.
Every time my body rebels and forces me to have get flat again before it completely shuts down.

Every day I have to pick myself up, dust myself down and choose to keep on fighting another day.

Sometimes I get weary.
Sometimes it feels like I have nothing left to give.
Sometimes I wonder if I am really strong enough.

But what else can I do but get up and keep on going? Hoping and believing that one day things will again be better than they are now. And that I will one day be able to access the medical care I need to help me get better.

That is what I wrote last weekend as I faced the consequences and hard reality of that fall. They were the feelings and thoughts that bombarded me last week. They were the things I had to face but then let go of.

It’s really not easy to be back here again!

“Pain is no evil, unless it conquers us.” – Charles Kingsley

And yet something is different this time. Those thoughts and feelings didn’t plague me for as long. I have realised that within me I have reached a place of deeper freedom. The journey I have been on for over 2 years has taught me so much and made me so much stronger, whilst simultaneously being more aware of my weakness.

As the condition has beaten me down yet again, I have felt a deeper resilience rise up from the inside – despite it all. A deeper peace to keep on letting go.

I almost feel a shout within me of ‘come on then, bring it on!’
A battle cry that I will not give in, I will still keep living here.
An act of throwing off the burdens and obstacles coming against me.
A determination to make the best of things that I can.

So that is what I am choosing to do. However long this cruel condition keeps knocking me flat. However much it tries to mould my life around its limited perspective. However much it tries to feed me with despair and taunt me with the life I could be living.
However much it tries to bind me up in it’s web of disability, restrictions and chronic pain.

I have to decide that I will not let it rob me of who I really am and who I am really meant to be.

If being Becky Hill means working with this rather than wearing myself out trying to constantly fight it, then I must work with it for as long as I have to. Looking for the opportunities, rather than focusing on the limitations, seeing the beauty still around me, even in those moments it feels unbelievably hard. Because….

  • if I cannot live here, then how can I ever ask anyone else to live through their own very challenging season either?
  • if I cannot find a life amidst all the restrictions, then how can I teach my children to do the same?
  • if I give up the fight then how can I encourage and draw out resilience in others?
  • if I cannot find joy in the midst of suffering then does my spirituality mean anything to me?
  • if I cannot love deeply and see outside of my self, even where there is pain, have I even found true love at all?

So seeing as I have relapsed again as we head into summer, we made our own declaration to this debilitating condition. We brought a garden sun bed that goes completely flat so that if I have to spend my days lying flat, I can do that outside as well. Amidst the garden, the sun, the natural world, the cool breeze and the birds singing their wonderful distinctive songs.

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So I will play card games with my family outside whilst lying flat, I will keep sharing my heart with my husband, I will ask my kids all about their days. I will continue to write, I will read books that inspire me, I will try to connect with and encourage others with my words. I will listen, learn, grow and change. I will enjoy the presence of God and allow Him to touch and change me from deep in my soul.

This condition has and will change me, that is inevitable. But I am determined for it to be only for the better. Because I will not let my spinal CSF leak completely devastate mine and my families life. I will not let negativity overshadow our love for one another. I will not let it steal my peace, love and joy. I will not let it take me down and pull me into the never ending pit of despair.

Instead I will rise up from deep within and find a way to live with all the restrictions, to enjoy the simplicity of life, to appreciate everything I do have and can do, and love everyone I can with all my heart.

“Pain is inevitable, but misery is optional!” – Andre Olivier

So it’s true: last week I tripped, fell and relapsed yet again. But last week I also chose a better way forward. I cried, I faced the pain and loss, I recognised the challenges ahead. I am not in denial, I am more aware than ever about how difficult this will be. There is never a simple way forward in this relentless CSF Leak game.

But after falling I had to get up again. I had to choose to live my life with even more determination and resolve. I had to make a decision…. to not give this condition permission to destroy my life.

Instead I must use it to build more resilience, increase my compassion and help me feel another’s pain. Use it to embrace time to write, read, learn and inspire. To declare that we can still have a life even when so much is stolen. We can still have purpose even when we are mainly stuck in bed.

So let me learn to endure this trial for as long as I have to. Let me find a way to tell another …. ‘yes this really is so so tough – but it can be done, we can find ways to live life like this.’ So let me choose to let go of the life I thought I should live and embrace the life I am currently living and give all I’ve got to truly living here.

Let my heart be moved and my mind be transformed until – rather than complaining – I can sing a new song of thankfulness and joy. Rather than focusing on all that’s lost, I will see all that can be gained. Rather than pulling others into my despair with me, I can choose to love and encourage others even in the midst of my and their pain.

It’s then that purpose can still be found in suffering. It might not be the purpose we envisioned for our life, or the path we would have chosen for ourselves or our family. But this is the life we currently have. So with a deeper resolve and a new patient resilience I will declare that I am finding a way to do this. We, as a family are finding a way to do this.

For as long as this journey takes.

I may not be able to do much. But I still have my work-in-progress story that is being written. It’s taken me on a tangent I never envisioned or imagined. But it’s still my story. Although I cannot control every part of my story I am the greatest contributor to the style in which it is being written, formed and shared.

So let me write the best story I can. The real story. A story of strength in weakness and love conquering all. So I can keep encouraging you to keep writing your best story too.

“Our story is what we have to offer the world…. I wish I had a different story than the one I just lived through, but I am so grateful for the story that has made me who I am today. Even the pain. Even the wounds. The sadness was real. The brokenness deep. The scars mine. It’s my story. It’s who I am. It’s how I’m becoming.” – Erwin McManus (The Artisan Soul).

This is my story!

It’s my story of who I am. It’s my story of who I am becoming. But it’s definitely a work-in-progress. I wonder how the book of my life will unfold? I wonder what it will all become in the end?


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.

Grappling with the Shame of Having a Rare Invisible illness

“Shame is a soul eating emotion.” – C.G Jung

In 2016, over a period of a few months, I came to realise how much shame I was carrying because I was still unwell, over 20 months, after a ladder fall left me with a debilitating spinal fluid (CSF) leak, somewhere in my spine. I write more about that journey of learning about shame and the devastation it can bring in this post ‘The Shame of Chronic Illness and Pain.

It was a journey of realisation and revelation following researching and contemplating what SHAME actually is and how damaging it can be in our lives. I was inspired to think about shame following reading Brene Brown’s book ”Daring Greatly: How the courage to be vulnerable transforms the way we live, love, parent and lead.’ The book encourages us to find the courage to be honest and vulnerable about who we REALLY are. It also talks a lot about shame and how destructive it can be in our lives and relationships.

“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

Reading the above words inspired me to write publicly about my realisation that I was carrying a lot of shame about the fact I was STILL very unwell. This had been made so much worse by the many battles to get properly diagnosed and then treated. Which many who have rare illnesses/ diseases can face. That includes many of us suffering from CSF leaks whether caused by an accident, purely spontaneous, from a labour epidural, C-Section spinal, a lumbar puncture or other medical procedures such as spinal surgery.

Many of us have faced doctors who have disbelieved us, or at least, disbelieved how bad our symptoms and pain are. We have been on a journey of misdiagnosis and seeing various different medical professionals, until finally finding doctors who understand and can help us. (When you do finally find those doctors they are valued, appreciated and loved more than they will ever know.)

And it’s simply because many doctors do not know much about CSF leaks. In the end, when we do get diagnosed, we are often told how ‘RARE’ we are. Although recently, it is becoming clearer that we are not actually as rare as people once thought – just commonly misdiagnosed, or even ignored, in the past.

Fighting to be heard when you are so very unwell is utterly exhausting and often completely overwhelming. Fighting your case when you are healthy is hard enough. But fighting when you are sick can be an utterly demoralising, shame filled, journey that can leave you with a potentially deeply dark despair. Especially when you are no longer confident that ANY Doctor will really listen and learn, what they need to, to help you.

Shame is that feeling of ‘I am not enough’ or ‘I am not good enough’. You can feel like a failure – not necessarily because of something you have done wrong, but because of who you are, or because of the circumstances you find yourself in, often due to no fault of your own. Sometimes simply because you have a medical condition, or something in your life, that most people just do not, or even refuse, to understand. You feel embarrassed, ashamed and humiliated and can then wonder if there is something really wrong with you as a WHOLE person. You think ‘perhaps I am just not ‘good enough’ or ‘strong enough‘ to do this, why can’t I ‘be and do better’ than I am doing… why do they not understand and listen?’

…. and SHAME begins to relentlessly and often unknowingly eat away at you!

Shame really messes with your mind and emotions and brings a whole spectrum of reactions from – hiding away from other people and getting lost in your own failures and problems – at one end – to getting angry, blaming others and lashing out, for the feelings you have – at the other. And often then trying to cover up your shame by pretending and putting up a front – in between it all. Sometimes we deflect the shame by blaming someone else. But often the fact is, whether or not someone else has directly or indirectly added to or even caused your shame, the soul destroying emotion of shame is still owned by us and we are the ONLY ones who can truly face it and deal with it.

Whilst we simply blame others for it, we won’t be able to get free.

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I really do believe many chronically ill people, particularly those with a rare condition or invisible illness, can carry a lot of SHAME from their difficult journey to be heard, supported and helped.

Shame…… that we are ill in the first place and can’t ‘overcome it’. Like other people can with ‘normal’ or less severe illness, and sometimes even more severe cases that can be more easily fixed or treated.

Shame…… when you know the doctors AND even sometimes members of your own family and friends are wondering if it’s ALL or at least PARTIALLY ‘in your head’. When the reality is your body is not actually functioning anything like how it should.

Shame….. that however much you try to engage with life, and ‘push through the pain’, you are still so exhausted by it. It daily feels like you are running a marathon after being whacked round the back of your head with a baseball bat. But you are also very conscious that you do not want to keep sounding like you are complaining and being negative. So you try to smile and chat ….so in reality many people often do not know or really understand how unwell you actually are. Until you have to leave and retreat due to the immense pain and inability to cope with the trauma in your head and body, so as to HAVE to get back to relief of lying flat again.

Shame…. that even when you ‘look well’ in reality nothing has really changed since last month when you ‘looked well’ for those couple of hours, or so, you managed to be ‘upright’ and out, or with others at home (even though in reality most of that time your body was actually screaming at you to get flat again so your brain could get back into its right position in your skull).

Shame….. when tests and scans come back negative and do not correspond with how severe your symptoms are. So you lack the clear, non subjective, medical evidence you need to ‘PROVE’ to others how unwell you are. (Although even having evidence does not necessarily always help and does not always correspond with how bad your symptoms are anyway).

Shame.… when someone asks you how the ‘headache’ is and you really want to scream at them “it’s not just a headache!!! Please stop just calling it ‘a headache’!! It’s a complex and debilitating set of neurological symptoms, pain and a feeling of trauma throughout your whole body which gets increasingly worse when I am upright until I cannot cope anymore.”…. But you instead calmly reply ‘yes, it’s still there!!’ (And has been for over two years …. every day…. most of the day…..when I am actually able to be upright).

Shame.… for the daily feeling that your life is currently so ‘small and insignificant’ because you can’t DO very much anymore. So you no longer feel like a fully functioning member of society. And can’t even fathom what a day with no pain and symptoms feels like any more.

Shame…. that you have to spend so much time in bed, because with spinal CSF leaks the only time you feel fully well is lying FLAT IN BED. (But it’s out of necessity – NOT a relaxing lie in… at times my bed can feel more like a prison than a retreat).

And the shame can pile up….

….shame….
upon shame.….
upon shame …… upon shame!!!

After every new appointment, after seeing ANOTHER doctor who doesn’t understand, after every test that comes back clear, after every social event you have to miss, after every month you can no longer work.

…and after…

Every person you have to tell every day, every week, every month, every year that you are STILL not well and there is still no clear end in sight!

Shame quote copy

I found so much freedom from that shame over the last year. But sometimes something new brings it back to the surface. It creeps back up on me again and attempts to sink it’s toxic claws into my thinking and emotions. I then realise I still have some underlying shame there …. or at least it’s destructive sticky residue is lingering and refusing to leave.

So as Brene Brown advises, I am again choosing to speak it out in this new post. And to say to others – “I feel your shame too, I feel the exhaustion of the fight, I feel the anguish that the nightmare seems to never end and the chaos it’s brought in your family and relationships.”

Every time I read about another suffering soul facing ANOTHER exhausting battle to be heard – I feel that despair with you!! I have been there, I have walked, and still walk, that never ending road of endurance. An endurance you are not always sure you will still have the strength for tomorrow.

A road I did not choose myself, but wake up to every morning – with no other option than to get up and face another unbelievably exhausting day of trying to LIVE LIFE with relentless debilitating  neurological pain and stiffness (head and spine), brain fog, mental and cognitive fatigue and impairment, body and limb weakness, vision issues, tremor, shaking and much much more. And have to dig deep daily to CHOOSE calmness, kindness, thankfulness, love and hope DESPITE it all!

Which is not easy!! 

I have also known the darkest of nights when you convince yourself that escaping life itself must be better than living it like this…. and then ALSO then felt the shame of being the one who ‘couldn’t cope anymore’ and was now mentally unwell too. The one who couldn’t endure how she hoped she might. The one who fell apart when she reached the end of herself after a year of health battles and disappointments.

And that is why I know, although I am only one voice, I am one voice speaking for many!! Speaking up is ONE of the things I can still do. So I hope as I say it this way – we can also become many voices united as one.

To remind people (especially doubting medical professionals and doubting family and friends) that until you have walked our path and we have walked yours – we have no REAL idea how hard the other person’s journey has really been and is.

So please don’t assume you know! And we will try our best to do the same for you!

Just because my case is ‘unusual’ and you don’t understand it. Just because my physical condition pushed me over the edge mentally. It doesn’t mean that it is mainly psychological and that I do not have a complex medical condition that leaves my body utterly debilitated. If you lived in MY body for a day – you would soon find that I do not have a simple ‘headache’ like the headaches you have probably known that go away with a couple of pills or a good nights sleep!! 

We just ask that you PLEASE listen and allow your mind to be opened, rather than try and force us into the boxes of your limited understanding and experience. I do not expect you to know what you don’t know. But I would appreciate it, if you could just listen and try to understand, and humbly realise that you perhaps do not know as much as you think you do about what is wrong with MY body.

Because….

Until you have watched your health being ruthlessly stolen from you overnight – with no clear assurance of getting it back any time soon. Until you have known the agony of mis-diagnosis and constant questioning from medical professionals unsure of what to do with you, in part, due to a lack of knowledge about your ‘rare’ invisible condition and subjective pain scales. Or worse – until you yourself have faced being ‘interrogated’ by disbelieving, and defensive, medical professionals who think they know – what in reality they obviously don’t. (We are so very very grateful to those who acknowledge what they don’t know and do choose to listen and learn with true humility regardless.)

You do not really know what it is like!

But when you do ‘get it’ or at least try to, then you are welcomed into a new family of others who do KNOW! Who have lived through the devastation of a rare debilitating invisible illness and walked a similar path either personally or alongside their loved ones, close friends or with many of their patients.

When your eyes, ears and hearts are opened and you meet others who have faced a similar pain and carried a similar shame – you know you are not alone! It gives you more fuel for the fight because the battle is no longer JUST YOURS. You are ALSO fighting on behalf of the MANY. Those walking with you AND those coming behind you.

So today I again choose to throw off my shame by SPEAKING IT OUT – so that I can take another’s hand. And say…. “yes this journey is so very tough…. yes the battle often seems relentless….yes we can’t be sure what the future will bring… and yes you will often wonder how you will ever endure the never ending storm.”

But we can fight TOGETHER!!

Some days I struggle to find the strength to fight for just ‘me’! But it’s then I must remember – it’s not just me I fight for!! I fight for you, your family member or loved one. I fight for the person, family member and loved one who will come behind me.

I fight with, and for, all those who know the relentless exhaustion of battling a rare or chronic invisible illness and pain.

WE also fight with, and for those of you, facing any challenge in life that feels beyond you at the moment. Because WE know what it is to have to choose to keep on going, and keep on living, when some days WE just really want to give up and escape it all.

So will you join our fight of many TOGETHER?

Because it’s then… That I find I can dig EVEN deeper. Deeper than I have ever gone before. To find the strength to endure OUR storm TOGETHER!

Because this life shouldn’t just be ALL about ME and MY struggles and pain. It’s about US finding a way to navigate through and endure the ups and downs of life together – as equal broken specimens of humanity. So that on the days I feel like I am falling back into a pit of despair, when EVERY part of my debilitated body screams at me to give up the fight. I know there is someone else who can reach down and grab my hand as I start to fall – offering empathy, love, compassion and strength – whilst also helping to pull me back up to face another day. Then tomorrow it might be my day to reach down to you, as you fall, and help pull you back up to face another day too.

And that way we will break away from the shame that tries to chain us up! AND dig deep to ENDURE the tough times TOGETHER!

Life is ALWAYS better when we face it TOGETHER!

“Two people are better off than one, for they can help each other succeed. If one person falls, the other can reach out and help. But someone who falls alone is in real trouble. ….. A person standing alone can be attacked and defeated, but two can stand back-to-back and conquer. Three are even better, for a triple-braided cord is not easily broken.” – The Bible (Ecclesiastes 4:9-10,12)


Do you feel that shame? We all carry shame in some form. Please do comment below – if we can speak it out then perhaps TOGETHER we can beat it!

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.

Reframing Negatives To See The Positives

The expressionREFRAMING NEGATIVES to see them in a more positive light, captured my attention recently. One of my friends had been talking about it and then a couple of days later I happened to read it in a book as well. I really liked the concept and have been pondering how I can apply it to my own life and current health challenges.

How can I reframe a negative situation so that it can be viewed more positively?

It’s often not easy to do this when you are facing challenging seasons. But I do have to ask myself daily – what is my other option? I could spend each day dwelling on, and being overcome, by all the negative implications of my current restrictions. But then I am just going to end up in a cycle of despair and frustration.

I have been there and it is fruitless, so very destructive and just makes me feel worse in every way.

So my only other option is that I have to reframe it! I have to find some positives here!

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Reframing is simply about looking at something with a different perspective. It’s about seeing ourselves, others, a circumstance or situation with new eyes. It can be a powerful and transforming process if we can fully embrace its potential.

“The real voyage of discovery consists not in seeking new landscapes, but in having new eyes.” – Marcel Proust

Our lives here are such, that there is always a sense of uncertainty about tomorrow. Yes there are some things we can predict, believe or hope for, because of decisions and choices we make today. But very little of our day to day existence in this world is truly fixed. There is an impermanence about our current lives. We all have to dwell in these fragile bodies that are subject to death and decay.

And yet there is also always a bigger picture we can’t see. I may only know the significance of today when looking back from the hindsight of tomorrow. Some parts of today may look desolate, like the deadness of a tree in winter, but perhaps my spring is coming somewhere around the corner. Maybe green shoots of life will again appear and grow from what currently looks almost dead. And that may look very different than I can perhaps imagine with the limited perspective of today.

Perhaps tomorrow can and will be better than today. Or perhaps tomorrow will bring even more challenges. But then in the weeks, months and years that follow, things might again be totally turned around.

We often just don’t really know what the future might bring!

I regularly have to look at my current health problems like that. I can see how one day, if fully recovered, I would get to look back, and whilst not forgetting the struggles of this season, I would by then be more able to focus on the lessons learned as well as the depth gained.

But that perspective is so much easier to SEE when approached with the gift of hindsight. When the storm is finally over it’s easier to look back and be thankful about the fact you survived and have learnt so much from walking through it.

And yet,

It’s not so easy to do that when you still feel stuck in the storm and there is currently no true ending in sight. You are weary from the mountain of disappointments, you are tired of hoping and believing it will soon come to an end – but then it never does.

But life still has to go on regardless!

The storm won’t yet clear – but life is still happening, time is still ticking away.

reframing negatives LIVING copy

We have to find a way to keep on LIVING in this limbo – however long it lasts. I have to find ways to REFRAME the life I find myself living and find a way to live the FULLest life I can, amidst all it’s challenges and restrictions.

The unfinished painting, that is my life, is not looking as I hoped and intended it to look after 37 years on this earth. But rather than hide my unfinished ‘work in progress’ life painting away in the shame of its current state.

I have to choose to reframe it and hang it up for all to see – both the darkness AND the bright colours of this season. To show others that even the dry desert seasons, that seem to rob us of who we really are and want to be, can also produce exquisite detail. Detail that will reveal a new level of vulnerability and humility, if we let it. A deep work that brings growth, maturity and a better perspective during the struggle’s of this life.

I may not get to choose whether I walk through this road of chronic illness and pain. BUT if I can’t find a way to keep on LIVING here, how can I ask others to keep on LIVING and persisting in their own wilderness or stormy seasons? If I can’t reframe my own challenges to see the potential beauty here, then how can I support others to discover beauty when they are going through even tougher times than me.

I have a responsibility to my family and those around me, to find a way to reframe my struggles, challenges, weaknesses and failures. Until they become a voice to help encourage others in their own wilderness times.

reframing negatives voice of hope copy

Everyone faces battles that feel beyond them, at some point in their lives. And when we do, we need those voices that help us press in for the fight. People that understand both the pain of suffering and struggle, as well as finding a way to truly LIVE and press forward in its midst.

We need to hear the message that TOGETHER we can rise above the darkness of today. Until, even in the midst our own pain, we can become a beacon of hope to another.

So I choose to hang my ‘work in progress’ life painting where it can be fully seen. With all of its inaccuracies, imperfections and shadows. With both the lighter AND the darker shades both fully exposed. So that TOGETHER we can choose to SEE something different. And realise that the most inspiring and beautiful works of art are often not the ones of perfection. They are instead, the ones that tell a unique, expressive story of a REAL life lived.

A life of BOTH light and dark moments that are being made beautiful. Because the artist chose to see the potential of different shades of colour mixed together. A story that is being written to express something extraordinary. A masterpiece that will only become a masterpiece when it is finally finished. And when it is finished the times of preparation, rubbings out, mistakes, corrections and so many reworkings are no longer even perceived underneath.

A painting which tells the story of one person’s life journey. A human journey of both joy and pain, sorrow and laughter, suffering as well as true peace.

A picture that most of all I hope will tell a story of true love. A story about how it is love alone that truly conquers the darkness. It is love that can reframe any negative, until it ultimately becomes something far more vibrant and beautiful in the end. It is love that chooses to fight and never give up, even when our body is failing us.

So let me reframe my current challenges and see them in the light of love. How can I love in the midst of my ongoing storm? Who should I show love to in THIS season? How can I serve others around me, despite the many limitations of today?

So I welcome you into my world, with love, hoping and praying that TOGETHER we will find a better way through. That we can walk with each other celebrating the brighter seasons, whilst ALSO helping one another to reframe the darker moments of our lives. As well as the many many different shades of life in the inevitable seasons of the ‘in-between’.

“God had a purpose He knit you together for
But life has pulled at the seams
And you’re unravelling
And you can’t hold it together anymore
But God will, He will finish what He started
No thread will be left unwoven
Nothing will be left undone…..
But when He’s finished we will SEE
A beautiful tapestry
And know that nothing has been wasted in the end.”
– Steven Curtis Chapman ‘Finish What He Started.’

“For we are God’s masterpiece…”
‭‭Ephesians‬ ‭2:10‬ ‭(The Bible)

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.