Tag Archives: Mental Health

Arachnoiditis, Spinal CSF Leak

Seven Years Since My Accident: Spinal CSF leak & Arachnoiditis

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“Life can only be understood backwards; but it must be lived forwards.” – Søren Kierkegaard

It’s now over seven years since I got ill.

Seven years… it’s such a long time right?

I never imagined seven years ago the way our lives would be so altered in one day.

In hindsight I don’t see the accident as the only culprit for these life altering diagnosis. Yes, the fall seemed to be the trigger. However, the more I have understood the conditions and my potential biological predispositions. The more I realise that it may well have been an injury waiting to happen. And if not THAT day and that fall…

It would perhaps have been another day, another trigger, that created a similar ‘explosion’ of symptoms, a leak, of an arachnoid inflammatory response.

I do have multiple thoracic micro bone spurs in my spine pressing into my dura (that holds my spinal fluid). As seen on a thoracic CT. So it was probably always going to be a risk that one day one might penetrate the dura. Or if not the bone spurs… maybe a spinal cyst (of which I have many) or some other dural weakness.

So as the quote above says … we DO often understand better backwards. Hindsight is often a great revealer – we often see things with more clarity the further on we go! And that can really help – so long as we don’t get stuck in that past, in the memories we can’t change, in the moments now passed. Instead we must choose to accept what has happened, attempt to reframe it and find the best way forward we can…

Despite it! Despite it all.

So that’s what I – what we – have chosen to do.

To reflect.

To accept.

To grieve.

Then…

Let go.

Move on.

And embrace the life we have!

I have been meaning to write this blog update for a while. Well at least since I made these last two videos for my YouTube channel. The first one I published in January is with my husband Matt and was a reflection on seven years since my original accident (a ladder fall) and trigger for the spinal CSF leak & arachnoiditis. The second video was a slightly longer video documenting how I manage my daily arachnoiditis & CSF flow/ intracranial pressure issues.

To make the videos easier to navigate I have included a breakdown summary in the video info section on YouTube. I will add a record of the video summary’s here. To to be able to skip to different parts you will need to view the video on YouTube directly by clicking on the YouTube link and take a look at the info section below the videos.

SEVEN YEARS SINCE MY ACCIDENT – A Reflection With My Husband

A reflective discussion with my husband Matt Hill about the challenges and positives of the past seven years since my ladder fall and development of a spinal CSF leak and arachnoiditis.

Summary of my accident and diagnosis. 1:00 min

1. What’s been one of the hardest parts of the last seven years? 2:18

2. What has been one of the positives of such a difficult journey? 7:00

3. What advice would you give to other spouses/ partners/ family members in this kind of situation? 9:30

MANAGING MY ARACHNOIDITIS – How I Manage My Daily Symptoms

This video is an update on my arachnoiditis/ mild adhesive arachnoiditis (AA) and how I manage to ongoing daily symptoms. I have not had a major flare in over a year but I do have many ongoing daily symptoms I have to micro-manage throughout the day to get the most out of my time.

Here is a breakdown of content you can skip to in video info on YouTube. The numbers signify number of minutes into the video:

0:28 Seven years of arachnoiditis/ mild AA

1:16 Current medication

1:57 Vitamins/ supplements/ diet

2:08 Walking physio

2:32 When people ask: How are you doing?

4:09 What does it feel like to have arachnoiditis/AA/ Spinal CSF Leak (active or in recovery)?

5:18 How did my fall cause arachnoiditis?

6:49 What does the arachnoiditis pain feel like?

9:49 CSF/ Spinal fluid flow issues

11:24 Standing is normally a better position for me

12:46 Higher Intracranial pressure (ICP) issues/ symptoms – common to those with arachnoiditis/ tarlov cysts and post spinal CSF leak

15:02 Problems with focus & concentration

18:33 How about driving a car?

19:07 Do I ever feel normal?

21:09 Do I have fears for the future?

I hope that the videos are helpful to others out there with both spinal CSF leaks / arachnoiditis or any other physical or mental health condition. It really is not at all easy navigating such conditions which is one of the reasons I choose to share my story. As you will see and have read previously, I am very blessed and privileged to have a very supportive husband, family and wider support network in our church and other supportive friends – both around me and online.

I really do believe we need others to make it through the immense challenges of these conditions.

So if you do feel alone today I would really recommend trying to find others to connect to – both around you or online through support groups. There are many groups available via Facebook groups, Twitter and other forums. Please don’t stay isolated if you do need support.

…And please don’t stay silent either.

Talking or writing really can help. Whether you show others or not. I am in a privileged position to be able to share my story publicly – others are not. But I hope that even when you can’t ‘find the words’ that my words might connect with you. So that you know you really are not alone. There are others – some better off and others worse off than you. Across the world many others are trying to find their way through dealing with and managing these conditions and their devastation on our lives.

I am thankful that in 2022 we have the internet to help us find one another so that our collective experience and voice might become even more powerful and increasingly louder – until more people are reached, understood and helped – both medically and holistically. So please do share my story with anyone who might listen – if you think it will help you and the cause in general.

Compassion and advocacy starts with you, and I, telling our stories and hoping that through them others might well be saved some of the additional pain we have had to face. We will then realise more and more that we face these awful illnesses TOGETHER and together we are surely so much stronger than trying to fight alone.

“Sit with hurting people. Offer them your presence. Show them you’re connecting to their pain. Listen to what they need. Weep with them. It won’t make them feel worse; it will make them feel welcomed into communion with you.” – Katherine & Jay Wolf

“My health may fail, and my spirit may grow weak, but God remains the strength of my heart; he is mine forever.” -Psalms‬ ‭73:26‬ ‭NLT‬‬

See this 5min video for a summary of my medical history from that ladder fall in January 2015.

For more posts of my arachnoiditis diagnosis please see the arachnoiditis menu above.

ARACHNOIDITIS INFO: ‘Arachnoiditis – Taming the Most Painful Pain’ Dr Forest Tennant video and Suspecting & Diagnosing Arachnoiditis (J. Antonio Aldrete) and The Arachnoiditis Syndrome (Dr Sarah Smith)

A medical paper supporting the use of steroids in treating early stage arachnoiditis and in the prevention of further adhesive arachnoiditis: Immunotherapies in chronic adhesive arachnoiditis – A case series and literature review . And another case where IV methylprednisolone was successfully used: Idiopathic Arachnoiditis of the Cauda Equina: A Case Report from Tanzania or see ‘Arachnoiditis: The Evidence Revealed’ by J. Antonio Aldrete,

For more previous posts about my story of living with a spinal CSF Leak (from before we understood the arachnoiditis element) please look at the subject heading on the menu bar above.

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.

Identity, Mental Health, Perspective

What is My Purpose? Do Small things with Great Love

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“Do ordinary things with extraordinary love.”

Mother Teresa

A few months ago, I was again immersed in the intense and dark storm of a traumatic spinal CSF leak symptom relapse – which also triggered the major mental health crisis I wrote about here. Part of my turmoil included the sense of feeling completely worthless.

Being perpetually stuck in bed with very distressing neurological symptoms often means you feel like your life has so little worth, value or purpose. Especially when you see most other people around you getting on with their seemingly important, full and valuable lives.

Feeling ‘purposeless’ amidst suffering and chronic pain really negatively impacts your mental health. Because when you feel like your life has no purpose, you simply feel burdensome to those having to care for you, and to the world in general.

In that crushing darkness I was immersed in, I just couldn’t see how my life could bless and help others. I just felt like I was, and would always be, a negative influence and drain on others. I even felt like deleting this whole blog, and my all of my public writing, because I decided that stories without happy endings are just depressing. If I cannot offer hope to those suffering then my writing may just discourage those already unwell and spread negativity rather than positivity. I thought to myself: what’s the point of me telling my sad story when the world is just full of sad stories?

In the end, I compromised and managed to just privatise this blog for a few weeks – until my perspective began to get a bit more healthy and balanced again.

However, as time went on – and the sun slowly began to break through the dark clouds – I realised that my mind had again got lost in the LIE often peddled in this world that ….

What you DO is far more important than who you ARE!

The lie that subtly tells us each day that if I can’t actually DO anything then my life is surely worthless?! I am just a chronically (and at times mentally ill) ‘insignificant nobody’ who is struggling to find the energy to live and breath, let alone have the energy or capacity to make a difference in the lives of my immediate loved ones – or the world in general.

“Experience is not what happens to you. It is what you do with what happens to you. Don’t waste your pain; use it to help others.”

Rick Warren, The Purpose Driven Life

Why do we so often fall for that ageless deception – that we only truly ARE what we DO?!

“What do you do?” everyone asks you when you first meet. “What do you do?” the doctors ask when they first see you – as if knowing such things means that they can now interpret your ‘medical story’ through the bias of what title the world has given you.

Those few ‘what do you do’ words often unknowingly heap shame on those of us in Western society now unable to DO as we used to.

The fact that we don’t, or can no longer, wear societies ‘badges of honour’ (its job and career titles) – perhaps because of immensely difficult seasons of debilitating illness or disability or other challenging seasons in our life – suddenly means that we become insignificant second rate citizens of the world.

When I get lost in such lies, it cripples me. Shame consumes me. I lose track of my identity. I feel completely lost and not sure where to anchor myself so as to move forward.

But as my perspective begins to improve one of the first things I begin to SEE is that I have again got deceived into believing a lie.

Slowly I can SEE again that I instead need to connect with the deeper truth of this universe, that is…

I am not what I DO!

I am still Becky Hill – whether I can be busy DOing a certain job or task, or if I can only lie in bed and look for ways to find purpose in the midst of all my pain and restrictions.

It was at that time and in that place of deep wrestling that one day I was sharing what I like to describe as a ‘Psalms type prayer of lament’ to God. I was crying out to Him, overwhelmed by the feeling that I didn’t have a purpose anymore. I was just so restricted by my physical condition that I was questioning what the point of me being alive was. If my life is simply about existing and enduring the pain, then is it really worth living??

And in that moment I felt God reply to me so clearly through the peaceful gentle whisper of His Spirit to mine…

“Precious child – your purpose is to daily ask yourself, “who can I show LOVE to today?”

It immediately EXPLODED in my heart!

It was so simple – yet the revelation so profound…

God wanted me to get the focus off of me and ask Him for creative ideas to show love to others – DESPITE my pain and limitations. He was telling me that even though, at that point, I was stuck in bed most of the day … I could still choose to love others from that place.

Those words from God that day resonated with and reminded me more deeply of the truth I already knew and lived by – that LOVE is only love when it is given and offered sacrificially. In the same way Jesus gave His life to love mankind by dying for our brokenness, we also need to be inspired by his example – by daily looking for ways to love others sacrificially too.

However, the key thing God continued to show me in that moment which has powerfully stayed with me ever since… is that the acts of love didn’t have to be BIG things. I just had to love as much as I could through the small things I could do. It was at this point the sign in the photo that we have hanging in our hall became a deeper revelation which has become my fundamental purpose for living…

DO SMALL THINGS WITH GREAT LOVE!

It’s so very simple and yet so deeply profound.

DO ORDINARY THINGS WITH EXTRAORDINARY LOVE!

It doesn’t matter how small or how ordinary what you have to offer is.

What matters is the amount of love you offer it with.

So …

It doesn’t actually really matter how BIG or extraordinary your job title is! What matters is how much love you do all the small and ordinary things in that job and the rest of your life with.

In that way the standard is equalised for all.

Our purpose is always the same.

No one has a more significant purpose than others.

So if today I can only hang some washing on the line, send a couple of empathetic messages to other people struggling and order some shopping for my family online – I can do it all with as much love as I can. I can serve others with a sacrificial heart. Which means the pain invested in the small things causes the love shown to be even greater.

So those words “who can I show love to today” have become the habitual daily question of my heart. Those few words – “do small things with great love” – have helped me immensely in walking through what seemed like an impossible time I couldn’t endure.

When I would wake up in the morning on those days and the dark reality of the struggle ahead would hit me like a ton of bricks, I would try to accept where I was – grieve my limitations – and then change my focus to ask God – ‘please show me who I can love with small acts of love and kindness today.’ In that place I tried to be mindful of others who were finding life challenging and think of how I could encourage them. I would look for very small jobs that I could do at home and try and pour my love for my family out through them. If I was shopping online – or later could go to the shops – I would try and think of who I could buy a special gift or card for.

And slowly…but surely…that sense of PURPOSE – EVEN AMIDST PAIN – was restored to me.

Because I again discovered that being alive meant that someone else could be loved, served, encouraged and blessed today.

It took the focus off me and my problems…

And shifted my gaze and contemplation onto His sacrificial LOVE flowing through me.

And the more I loved.

The more I felt His love.

So the more love I then had to give.

“The greatest thing about helping other people is for the moment you forget about yourself.”

Matthew Barnett

I again discovered that the giving and receiving of true love is probably one of the best medicines to help sooth the pain. It is certainly the highest and most significant calling of our lives.

So today I decided to share my story with you again – to tell you with great love to never forget…

That despite your chronic pain, despite all of the debilitation, despite your current disabilities and limitations, despite all of the restrictions you seem to be facing…

There is still a much greater purpose for you.

Please don’t lose sight of that like I did. The truth is – there is still so much to live for. There are things that only you can do. There are words and tasks that only you will be able to see need doing, or saying, that may be able to connect with and encourage someone else really struggling.

So choose to love daily.

Choose love as the highest purpose of your life.

And whoever you are – whatever worldly title you do or don’t have – whether you feel important or insignificant – try to simply do…

Small things with great love.

That way, the world will shine a little bit brighter because you are still in it. Which is so important to both us, and others, who seem to be constantly stuck in a cycle of – at times – overwhelming darkness, brokenness and pain.

As I write these words today and try to infuse them with as much love as I can, I hope that you will today truly SEE how extraordinary you can be – IF you will just do and say ordinary things with extraordinary love.

Whilst knowing how much greater that love is – when it is given with the deep sacrifice of your ongoing pain.

“I was broken so that I may understand the broken, so that I may reach out to the hurting, and comfort the wounded. I have the capacity to bring hope and love and healing. A once fractured mirror finding new purpose, because I am no longer reflecting myself, I’m reflecting Him. This is my reason for living. This is why I was created.”

Sam Re

To read more about my recent mental health crisis please try this post; A Window into a Suicidal Mind  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.’ For an article on a similar theme to this one please try: Is Busyness a Choice?

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

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.