Tag Archives: relapse

ARACHNOIDITIS RELAPSE AUGUST 2023 WITH ACUTE LOW PRESSURE HEADACHE FLARE – What is the connection?

September 7, 2023 Becky Hill 8 Comments

“Perseverance is rooted in hope. We persevere when we believe that what awaits us is worth the fight.” – Sarah Walton

Sadly, following just over a year with much more ‘stable baseline’ arachnoiditis/ CSF leak symptoms…

I finally succumbed to a new flare.

Another relapse.

And it was again … BAD.

Bad enough that a 10 day course of 40mg prednisolone (oral steroid) hardly touched it….Took the edge off maybe… But certainly couldn’t stop it!

That is the power of my arachnoiditis flares. Once established – they seem untouchable to halt.

… Until we use the IV Methylprednisolone 1g a day x3.

Until we hit the inflammation HARD & FAST.

That’s the only thing that seems to stop it in its tracks and subsequently reverse the relapse process… back into recovery.

I have again documented this flare with a new YouTube video (see below) made post IV treatment. But it includes some footage from the flare itself.

I make these videos to raise awareness, to educate, to continue to tell my story, inform others of my progress and also to process my own trauma.

Because it’s always traumatic.

To feel that abhorrently unwell. To feel so vulnerable and out of control. To be brutally reminded of the nightmare of dozens of previous relapses … and especially the trauma of the memories of the ones from before…

… from before we knew about the central nervous system inflammation. About the Arachnoiditis that seems to have been there from the start.

Hiding in plain sight for many years.

Before we understood – about the arachnoiditis inflammation and the way these flares always seems to take me right back into my acute low pressure/ spinal CSF leak symptoms.

Before we understood ALL that … I just had to endure, hold on and attempt not to deeply despair at the horrendous symptoms in my whole brain, spine, nervous system and whole body. That take me over and force me back to bed. Pretty much all day every day. And back then we didn’t really know how best to treat it. So I would often be like that for months.

It is easier now.

You see I have a ‘plan’.

The support of two great neurologists at two NHS trusts who work together to ensure I get access to the best treatment as fast as we can.

Also the oral prednisolone 40mg DID help! They stopped terrible symptoms getting totally and utterly unbearable with ‘relapse lightening speed’. But it couldn’t stop it. And the day I did stop it to have the IV later on. My symptoms crashed in super quick time.

RELAPSE TRIGGERS

The relapse started after a mix of long car journeys to see family across the U.K. Then on top of that walking into a door frame, bashing my knee HARD and jolting my spine. Thankfully I happened to have a follow up telephone appointment with my CSF leak specialist neurologist the day things really took a turn for the worse – so that really was helpful and another undeniable moment of divine providence I am so grateful for. So he recommended we ask my local Neurologist to arrange the IV. As is the arrangement. As is my medical protocol already established over the past 3 years.

This is my 4th IV in 3 years since I was diagnosed with arachnoiditis. Although in reality it’s always been there since my fall from a ladder in January 2015. That’s what my MRI’s show from March 2015 and that’s the story my symptoms tell me.

It’s always been the same story. From day 1 until now. The same pattern of the initial illness to every relapse ever since. Although my lumbar/ sacral/ leg/ feet/ bladder symptoms have got worse over the years too.

I had the IVs Methylprednisolone 1g Thursday 24th – Saturday 26th August 2023 on GPAU (General Practice Assessment Unit) at my local hospital.

And I am thankful to report that I am now doing a lot better.

It normally takes a couple of weeks to truly get back to ‘my normal baseline’ symptoms. And today as I am writing this we are two weeks post start of the IV. Nearly 4 weeks since this all started. I have just finished the prednisolone taper from 30mg down to 5mg and have just returned to 5mg every other day. Today is my first steroid free day in about 3 1/2 weeks. Although I have taken 75mg diclofenac today to cover me as I try and phase out the steroids back to my normal 5mg every other day. I have also recently returned to my normal 4.5ml of LDN. (Low Dose Naltrexone). (Just to note I also have had to use Zopiclone (sleeping tablet) 7.5mg at night when on higher dose steroids. Although my sleep is now improving again too).

I am finally beginning to feel like ‘my normal’ is pretty much back – give or take a slightly more spacey head at times. But that is also improving each day.

I am back to walking over 10k steps a day and doing lots around the house to keep me moving about. I am also slowly introducing more going out a bit further and will start driving short distances again soon.

So it’s good news.

It came.

It took me down.

We fought back.

We conquered.

I am recovering.

“Endurance is not just the ability to bear a hard thing, but to turn it into glory” – Philip Yancey

For all this I am extremely thankful. To have diagnosis’. (Arachnoiditis & a Spinal CSF leak). To have neurology support at two hospitals. To have a treatment plan that works. To have GP’s who understand.

It all helps so much. The major battles are already fought and won. I have my treatment plan and supportive doctors in my corner. But in reality there are always many small battles along the way. Making lots of calls, sending lots of emails, following up and explaining things again and again. Reminding medical staff I have to lie down as it can’t sit comfortably and can’t be upright at all early on in a flare. Lying down in the car to get to hospital as I cannot tolerate sitting up. Lying down in waiting rooms – hoping for enough chairs together that are free. Otherwise we carry a yoga mat for me to lie on the floor without getting completely dirty. Then there is the chaos at home of me not being able to do things … although even that is easier now my girls are 16 & 18 and can help so much more.

For all the easier things about my story I know I am blessed. I am one of the fortunate ones. Because this level of openminded medical support can be unheard of in the lives of people with suspected or actual arachnoiditis or AA (adhesive arachnoiditis). Still my doctors are all learning with me. But as we learn together the support gets more solid, more understanding. Which really does help counteract the trauma of many years of ‘doctors not understanding’ (as I wrote about so vividly here after counselling.)

So that is why I continue to share my story. I don’t take my privilege for granted: I try to raise awareness. To educate doctors, patients and family and friends. To connect with you in your immense struggle, confusion & despair. To show you ways and treatments that ‘might’ help you too – if you can find the right doctors to help you. To implore you to just keep ‘holding on’ … for years if that’s what it takes (like in my case)… because things can still get better in the end. There is always hope.

Everything I discuss in my videos is based on personal experience, years of symptom observations, plus my own research and listening to others stories. My experiences are unique and thus uniquely managed by my two neurology teams and two different Midlands UK NHS hospitals. So I cannot comment or offer any medical explanations, advice or diagnosis to others. I only share my own story in the hope it may help others on their unique journeys to more answers. I can only answer your questions according to my own limited experiences and the research I have done.

But from what some of you do tell me – sharing my story can help right? Just to know that somebody – somewhere – sometimes across vast oceans ‘gets it’. That they understand your deepest struggle, your most excruciating pain. The daily overwhelming choice to try and keep on finding ways to live despite the constant trauma, questions, confusion, misunderstandings and the deepest of pains.

So today I write to remind you that I really do understand. But these days – more than ever – 8 1/2 years on. I am learning to find a way through it – dare I say – to even THRIVE.

For these reasons my videos and articles are all fully public and can be shared with anyone, by anyone, on any platform. I also write to make translation easier because I know many non-English speakers are keen to follow my story too which is harder with the videos.

So here it is – here is my new video, I have included a content summary below so that people can more easily skip through and find the parts they are interested in.

WHY DO MY LOW PRESSURE / SPINAL CSF LEAK SYMPTOMS GET SO MUCH WORSE DURING MY ARACHNOIDITIS FLARES?

The video documents my recent arachnoiditis flare in August 2023. During this video I also consider the question as to why my low pressure headache/ spinal csf leak symptoms get equally acute during the flare. How does the increase in the inflammation and the physiological mechanisms at play cause me to revert to such distinct Spinal csf leak symptoms? As has always been the case in my medical history over the past 8 1/2 years since a ladder fall in January 2015.

In it I present some theories of my own as to why this happens so radically including:

I leak more due to higher pressure from inflammation
I seep more from the adhesive area or via my compromised Dura in that area.
The inflammation blocks my spinal fluid flow causing radical changes in ICP.
Or the one I discuss most in this video: that the inflammation pulls at my spinal cord – especially if the more adhesive area is trying to adhere further. Subsequently, bringing an increased ‘tethering sensation’ to my spine. Pulling my brain stem to create that ‘brain sag’ affect – the feeling of ‘my skull being pulled into my neck’. But then also ‘my sacrum being pulled into my lumbar spine’. Could it be that this process then blocks flow too? Causing very real sensation of my spine being tightened and clamped at my neck and sacrum which further supports this theory. Also interestingly I had some people who had previously had surgery for ‘tethered cord syndrome’ comment on one of my ‘bizzare symptoms’ videos telling me that my symptoms sounded like I had a tethered spinal cord. To which I replied – that would make sense if I have AA. Which everything points to me having – at least mildly.

But they are all just ‘theory’ because not enough research has been done. Not enough patients have been studied to really know. Although the more years that go on … the more I realise there is a lot of ‘medicine’ that is about hypotheses and theory. Although then there is the force of science that wants that evidence and proof to back it up.

But I guess that there is a sense in which – I am the evidence. My medical history, scans, test data and response to treatment are all part of ‘the science of my story’. Even if I may be a bit of an anomaly.

Please do comment, reply & let me know if you have any similar experiences – especially if you have both arachnoiditis / AA as well as a spinal CSF leak. Do you find your low pressure / spinal CSF leak symptoms get increasingly more acute when your arachnoiditis is flaring? Do steroids or anti-inflammatories help you too with all your symptoms?

The more we talk and discuss – the stronger our theories can become. So it helps me to hear your stories – as much as your hearing mind hopefully helps you.

Content Summary so video can be skimmed through.
0:12 Relapse Intro
1:06 Post flare recap
1:52 WHY DO MY SPINAL CSF LEAK/ LOW PRESSURE SYMPTOMS
GET SO MUCH WORSE DURING MY ARACHNOIDITIS RELAPSES?
2:00 Low pressure/ spinal CSF leak symptoms
3:48 Explaining my acute low pressure symptoms during relapse
5:50 Taking 40mg oral prednisolone (steroid)
6:03 My legs are not working properly
6:50 Relapse cause/ triggers: car travel then jolting spine
11:38 Follow up call with Neurologist
13:40 IV Methylprednisolone 1g IV x3 days on GPAU
14:40 Do high dose steroids increase ICP?
16:40 2 week prednisolone taper from 30mg to 5mg every other day normal dose
18:42 Can you relate? Do you get similar symptoms? Please do comment or reply.

Please remember that all videos and articles can be shared with anyone, by anyone, on any platform. As they are all in public realm.

So this is where I say ‘goodbye for now’. I am sorry I don’t update my blogs and videos as much as I used to. But to be honest I often just don’t have the time or energy. I like to do this. I like my story having a wider purpose. But it is also a challenge to achieve amidst even my mildest daily symptoms. So forgive me when I don’t write or make videos for a while. It’s normally because I am just ‘trying to find ways to embrace the life I have.’ And thrive as much as I can within all the restrictions, pain, limitations and debilitation.

But I do want to end by saying…

THANK YOU!

Thank you for listening. Thank you for taking the time to enter into my world for a moment. Thank you for your grace and kindness in bearing with my ponderings, wrestling’s and many questions.

You are appreciated. You are valued. And you are loved.

“When we know we are loved we find it easy to love other people” John Sentamu

Please do make comments or ask questions on YouTube, here, my social media pages or on Facebook group pages and I will try to reply when I can

For the full summary of my medical history including ladder fall in January 2015, spinal CSF leak diagnosis and footage of my January 2021 arachnoiditis flare see this 5 min video:

ARACHNOIDITIS RESOURCES

‘Arachnoiditis – Taming the Most Painful Pain’ Dr Forest Tennant video https://youtu.be/VGuS1iTuhLo and ‘Arachnoiditis No Longer A Rare Disease’ https://www.practicalpainmanagement.com/pain/spine/adhesive-arachnoiditis-no-longer-rare-disease

Suspecting & Diagnosing Arachnoiditis (J. Antonio Aldrete) https://www.practicalpainmanagement.com/suspecting-diagnosing-arachnoiditis

IV STEROID TREATMENT PAPERS: Dr J. Antonio Aldrete also co-authored a comprehensive medical book called ‘ARACHNOIDITIS THE EVIDENCE REVEALED’ with a whole chapter (51) dedicated to the study of using IV Methylprednisolone in the acute stages of Arachnoiditis/ Adhesive Arachnoiditis to prevent further progression and damage. Another medical paper supporting the use of steroids in treating early stage arachnoiditis: Immunotherapies in chronic adhesive arachnoiditis – A case series and literature review https://www.sciencedirect.com/science/article/pii/S2405650221000423?fbclid=IwAR0lAuYagMPknv0pATPQ1dvOt_b0VlIEn6yxJx-DJ9o22EDb45LHJYuH9mg And another case where IV methylprednisolone was successfully used: Idiopathic Arachnoiditis of the Cauda Equina: A Case Report from Tanzania https://www.karger.com/Article/FullText/518379?fbclid=IwAR32EN7tPQD3iKOO9I8bI05ylXvuy-yjLsDyVlmESVJsW63y_j1IqAuFxDo

SPINAL CSF LEAK INFO: Here is a brilliant 2 min animation about Spinal CSF leaks. For more information about spinal CSF leaks please see the UK charity website at www.csfleak.info or the US charity website at www.spinalcsfleak.org. Please see this 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.

Mental Health, Perspective

A Window into a Suicidal Mind

September 24, 2019 Becky Hill 16 Comments

“I remember the wild agony of no way out and how the stars looked, endless and forever, and your mind can feel like it’s burning up at all the edges and there’s never going to be any way to stop the flame.”
Ann Voskamp

Only those who have experienced the trauma of a suicidal mind can truly understand how agonisingly dangerous it is.

We usually do the upmost in our lives to avoid things that might kill or harm us. But when it is your mind trying to kill and harm itself – it can feel impossible to get away from. It takes you hostage, binding you up with all its lies and accusations, torturing you inside your own head, home and life.

Refusing to let you go.

If only I could explain to you what it feels like…

I recently read the beautiful article on suicid e that the above quote is from. And straight away I connected with the author whom I instantly knew understood.

You see I never used to understand.

I used to assume that I would never think that way. That life couldn’t get that bad for me. That I couldn’t be that selfish. I assumed that my ‘superior’ coping mechanisms could surely carry me through any storm that came my way.

Until life took me through seasons when I truly felt …. “the wild agony of no way out…”

At the end of April this year I dramatically relapsed in my spinal CSF leak and arachnoiditis symptoms…AGAIN!! After eighteen months of clear improvement since my last epidural blood patch. Everything came crashing down again physically and mentally.

And I found I had absolutely NOTHING left to fight with.

I had completely burnt myself out physically, mentally, emotionally and spiritually from fighting this horrible condition and all the misunderstanding’s surrounding it – for so long.

I ended up stuck in bed nearly all – day and night – in almost perpetual intense, agonising pain. Everything simply exploded symptom wise and it felt like I was getting every type of headache and nerve pain in my spine you can get on top of the ‘low pressure’ issues. It was non-stop, non-positional pain, and made worse by the fact I was hardly sleeping at all.

I am only now beginning to feel more ready to talk about what happened back then more openly. Rather than just wanting to hide from the world and not speak up.

It’s only crippling shame that tries to keep me silent.

But as I get increasingly well, I know that part of my healing and restoration comes in being able to talk more openly about how bad things were. I know that the only way to deal with shame is to speak it out. So as to process my own journey and also to connect with others’ suffering and struggling, as well as to help others to understand more.

So here’s some more of the brutal and raw truth about the traumatic wrestlings of a suicidal mind. At the time, I wrote some poetry in my iPhone notes. I guess to try and process my thoughts and explain to others how it felt. I did show these to my husband at the time which he appreciated – even though they were often painful for him to read.

This Pain in My Head

I am going mad
This pain in my head
Persists and won’t go away
It’s killing me slowly
Polluting my life
Stealing everything away

What do you do When you are Drowning?

I am drowning – can you see?
My head keeps sinking below the surface.
My legs furiously attempting to keep my head above the waves.
I have no strength left to fight.
My legs are growing so tired.
My mind just won’t stop whirring.
The pain won’t let me go.

I am suffocating – can’t you see?
Where life is being squeezed out of me.
My energy leaving me, my endurance gone.
My life just a shadow of what it once was.

I am in inner & outer torment – can you see?
The pain and debilitation slowly taking over all I am.
Like gangrene it eats away at me.
Stealing my life, my strength, my hope

I love you all so much – can you see?
I am devastated by just what may be.
To think of your tears, your cries, your heartbreak and pain.
To think of destruction eating away at your hearts.
To think of the backlash and the battle.
To think of all the awful desolation left behind.

How could I?
How can I?

What am I supposed to do?
Do I keep existing or allow the waves to take me where they will.

So the battle rages and I sink yet deeper still into the darkness.
The pit of despair – a place that won’t let you go.
Destruction all around me.
Devastation following.
Despair keeps on calling my name.

I am stuck in the pain and anguish of living here.
Trying to love here…
Trying to suffer well…
Trying to hold on…
Trying to clutch on to life…
Trying to not let go…

But losing…
I am losing…
I am losing…

I don’t want to be lost
But devastation is calling my name.

The Torment of Pain

Pain torments you it pulls, pushes & wrestles with your mind
Persistent pain consumes you until nothing else is left
It eats you alive leaving your flesh exposed
Infection after infection ravages your thinking
Mind constantly infected
Tormented
Trying to hold on
Trying
Trying
Trying to hold on
Gasping
Reaching
Clutching
By my finger nails
Trying to hold on

How Long am I Supposed to Endure?

How long am I supposed to endure?
She asked, writhing around in pain
How long do I need to exist in this for
She asked, living as if death was life

They tried to understand
but still couldn’t see
the pain
that never went away.
The torture of not knowing how long to endure
Was stealing her whole life away

The problem was
she could no longer see
a future any better than this
She tried and she tried to hold on for love
But the pain was pulling her to defeat

Many would question the size of her love
The fact she could not endure or remain
But that is because they never lived in her body
And never kept on feeling her pain

Somehow reading them as separate poems doesn’t quite do justice to the intensity of the trauma that takes over your mind when you are backed into the ‘corner of dark shadows’ that is suicidal ideation.

Your mind is completely out of control.

You can no longer think rationally. It’s just a massive ball of dark, oppressive and negative thoughts crippling your perspective and adding to your intense internal and external agony.

I still felt so much love and love was actually my only anchor and light. But love was often even painful to feel, because you think that if you really loved others – that much – you should be able to endure and remain.

Right?

But you don’t have any energy to remain anymore.

It’s relentless.

Completely overwhelming.

All consuming.

Utterly unbearable.

And as dark as dark can be.

….And I was hardly sleeping at all. So there was no relief.

That’s why it’s called ‘mental illness’ – because you are extremely unwell.

And you just can’t ‘snap out of it’. Or just ‘think positive thoughts’. Or ‘reign in your thoughts’. Or simply ‘change your perspective’.

You no longer have that ability.

Your mind is no longer your own.

Without the love, compassion, support and care of my amazing husband, family, church family, friends and doctors, I am not sure I would have made it through.

It still scares me to know first hand what a vulnerable and dangerously over stretched mind can end up like.

But I do know talking openly about it shows how far I have come since then. To know that I was simply very very sick – both physically and mentally. It breaks my heart to know that others are facing this same battle – in similar and very different ways – each and every day.

Unless we can try to listen and understand more what goes on the the mind of someone feeling suicidal, we won’t be able to help them overcome the immense stigma, shame, misunderstandings and trauma of that experience. We need to know how to best try and help ourselves when we find ourselves there. As well as helping those stuck in the oppressive prison of a mind on the edge of suicide.

So that’s why I am opening up my own immensely humbling experience again. To let another struggling soul know today that you are not alone. I have been there and I want you to know…

It can get better again.

I know you can’t see it – yet.

I couldn’t either.

I only felt the ‘agony of no way out.’

But one day the sun did again begin to break through the clouds.
And I began to walk out.

Albeit bruised, battered, burned, startled and scared from the fight. But I made it through again. So please just keep putting one foot in front of the other.

Just hold on a little bit longer.

Allow someone else to walk through it with you.

And then get strong enough to share your story. Because it might help to reach and save another struggling soul too.

“I wanted the brave to speak up, to speak the Truth and Love:
Shame is a bully and Grace is a shield. You are safe here.
To write it on walls and on arms and right across wounds:
“No Shame.
No Fear.
No Hiding.
Always safe for the suffering here...”
If we only knew what fire every person is facing — there isn’t one person we wouldn’t help fight their fire with the heat of a greater love.”
Ann Voskamp

To read more about my first mental health crisis please try this post; ‘Breaking Through the Darkness .’ To read more about my beginning to understand how crippling shame had become in my life please see; ‘The Shame of Chronic Illness and Pain.’

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

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.

Spinal CSF Leak, Suffering & Grief

Facing Disappointment After Disappointment But Pressing On Regardless…

May 29, 2017 Becky Hill 7 Comments

“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.

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.