Tag Archives: adhesive Arachnoiditis

“A Crushed Spirit” – Finding a Way Through Dark Times

“The human spirit can endure in sickness, but a crushed spirit who can bear?” ‭‭

Proverbs‬ ‭18:14‬ ‭


A few months ago I re-read this Proverb and it again spoke to my heart. Afterwards I felt a deep sense that I should make a series of videos about it. Because for me these simple words tell a profound story about sickness & suffering. They also give insight into some of my own story about the reality of enduring long term sickness.

The proverb explains that the human spirit can endure a lot of things. Throughout history, many many people have had to endure long seasons of deep suffering. In fact, things probably used to be much worse. There were less medicines, less diagnosis, less surgery, less wider help & support. So people have always – throughout history – had to endure suffering, pain, and sickness. Sometimes for their whole lives. So we know that the human spirit has shown, again and again, that it can endure a lot.

HOWEVER the proverb goes on to contrast that “a crushed spirit who can bear?”. Meaning that although humans can endure a lot – there is another state of suffering of the human spirit that can feel impossible to bear.

That is why I wanted to make these videos. To discuss what it feels like and how to endure and find a way through the seasons when our spirits feel crushed.

Another translation of this proverb says:

“A cheerful spirit gives strength even during sickness. But you can’t keep going if you have a broken spirit.””‭‭

Proverbs‬ ‭18:14‬ ‭NIRV‬‬

So here we have another meaning for crushed, which is the word broken. The same Hebrew word is also sometimes translated wounded. Basically, this tells us that a season of a ‘crushed spirit’ is characterised by feelings of:

BROKENNESS – WOUNDEDNESS – INNER PAIN – DESPAIR

If you have ever experienced a season like this, you will know exactly what I’m talking about. For some people it may be characterised as depression or extreme anxiety. For others it may well lead them into a time of suicidal ideation/ thoughts of wanting to leave – or escape – this world & all of its pain.

It is certainly a season that is very very difficult to bear and endure.

I have been there myself. I have tasted of the darkness of a season of a crushed & broken spirit. Some might call it ‘the dark night of the soul’. It’s a time when everything feels so dark and oppressive and it’s so difficult to see any light, any joy or to see a way forward. You feel stuck or lost in such a season. It can also be extremely dangerous, especially if someone is actually also feeling suicidal because there seems ‘no way out.’

This is why I made these videos and why I am writing this blog post to introduce the series. I hope that it reaches out to people who currently feel immensely lost, dark and crushed. My prayer is that it helps to bring some hope again – even if just a flicker of a flame. So that you can find a way through. I believe you can find a way through – because I did. Despite not being able to see it at the time.

In this article, I want to introduce you to a summary of each video and the main points in each one. You will discover, as I tried to explain many times, that this content has been inspired by what I have learnt on my own journey since I first started out on my journey of long-term illness (spinal CSF leak & arachnoiditis) in January 2015. Over those six years I have been through at least three intense seasons of ‘a crushed spirit’ as I write about in Breaking Through the Darkness and A Window into a Suicidal Mind.

So these are some of the ways that I have found a way through & discovered a new way of living despite the deep ongoing challenges of living with these conditions & managing them on a daily basis.

VIDEO 1 : ACKNOWLEDGMENT & VALIDATION.

In this video I talk about the importance of being honest, opening up & talking to someone about the truth of your struggles. In my experience it is vitally important to get what is locked in the darkness of your mind out into the open. When it stays stuck on the inside the chaos takes over and the mind quickly snowballs out of control. Getting our thoughts and words out of whirring around our heads can help us to bring more order to our thoughts, help us process and understand ourselves and others better.

It then helps if you can speak to someone who will validate your struggles and help support you through them.

VIDEO 2: ACCEPTANCE & LETTING GO

In this video I talk about my next step in finding more serenity: peace & calmness. That is leaning to ‘accept the things I cannot change’ but also courageously ‘changing what I can.’ This can often include going through painful season of grieving & letting go of who you once were or your dreams for the future. I also talk about learning to live more in the present. Which doesn’t mean we don’t face, process and find healing from yesterday’s trauma. But simply means that we choose not to get stuck there. I also talk about having hope for the future whilst not getting lost in its never ending what if’s.

VIDEO 3: CALMING THE MIND

I start off by honestly talking about my experiences of my mind feeling totally out of control. I remind us that we may sometimes need professional help from doctors etc before we can move out of such an intense season. I then go on to share about these main points:

  1. Getting what you are thinking out in the open. A mind where thoughts get trapped can quickly turn very dark. It’s important to share how we are feeling honestly with others.
  2. Protecting your mind – being careful with what you read/ watch/ listen to/ who to talk to. Guard what you feed your mind with.
  3. Thought replacement (not denial) filling your mind with better thoughts. For me this includes bombarding/ renewing the mind: Listening to and reading things that encourage and inspire you. Love was also something I would try and focus on and was a real anchor for me.
  4. Gratitude: Focusing on what I do have rather than on what I don’t.

VIDEO 4: FINDING NEW PURPOSE – Purpose in Pain

“As my sufferings mounted I soon realized that there were two ways in which I could respond to my situation — either to react with bitterness or seek to transform the suffering into a creative force. I decided to follow the latter course.”

Martin Luther King, Jr
  1. Transform suffering into a creative force for good. Our own experiences put us in the privileged position of being able to feel more empathy & connection. It also puts us in a more experienced place to provide advocacy & fight for justice for others (as well as ourselves). This can include educating others about these illnesses & raising awareness about these conditions.
  2. I am not what I do: Establishing a new identity. This will include the grieving of letting go of who we once were so that we can learn to discover new purpose and achievement in the small things. I wrote a whole blog article about this a couple of years ago titled: What is my Purpose: Do Small Things with Great Love. In it I wrote about how I was inspired by God to find purpose by daily asking the question: “Who can I show love to today?”
  3. Discovering a new way of living – Finding what we can do despite all of our restrictions. This can include doing small loving things. It could include spending time with others at home, calling them, writing or sending a message. We can often find more purpose in thinking about others rather than just being consumed by ourselves.
  4. Bearing suffering as a source of achievement & setting an example to others. I read Viktor Frankl’s ‘Man’s Search for Meaning,’ a few years ago about how he and others endured the desperate suffering of the concentration camp by discovering a higher purpose.

“…the way they bore their suffering was a genuine inner achievement. It is this spiritual freedom— which cannot be taken away—that makes life meaningful and purposeful.”

Victor Frankl

This can also include a realisation that us finding a way through can be so significant for those coming behind us on these journeys. Some of those people could actually be your own children, your family or friends in the future.

My prayer for you is that these videos provide some inspiration to help you endure – and hopefully find a way through – your own season of ‘a crushed spirit’. Or perhaps instead they might help to educate you to learn how better to support loved ones who are going through immensely difficult seasons of suffering in many different ways.

We all at times need others to help us come through these darker & more desolate seasons. I truly believe that we are not meant to face these things alone.

“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.”

Ecclesiastes‬ ‭4:9-10‬ ‭

So most of all today I want you to know that you are not alone. I have been there myself and it was the hardest and most painful thing I have ever had to face and come through. But I can tell you:

THINGS CAN GET BETTER AGAIN!

So never give up hope – clutch onto it, even if only by your fingernails – and do what you have to to make sure you can stay holding on. Because I do believe one day you will look back and be glad that you did. And maybe – just maybe – your own story of overcoming can then be a guiding light to others. To help them find their own pathway out of that crushing, broken & wounded place. Into the calmer & greener pastures of more holistic wholeness & deeper rest for your soul. Despite your challenging circumstances.

“O Lord… You know me more deeply and fully than I know myself.  You love me with a greater love than I can love myself. You even offer me more than I can desire… Take my tired body, my confused mind, and my restless soul into your arms and give me rest, simple quiet rest.”

Henri Nouwen


To understand more about my medical case & story please see my new summary video of my whole medical journey please see this video.

NEW VIDEO DIARIES: ARACHNOIDITIS & SPINAL CSF LEAK RELAPSE/ FLARE

“I alone cannot change the world, but I can cast a stone across the waters to create many ripples.”

– Mother Teresa

At the end of January I had another horrendous relapse / flare of my arachnoiditis/ mild adhesive arachnoiditis & spinal CSF leak symptoms. Although I had experienced some pre-warnings in the weeks before, on Thursday 28th January my symptoms again exploded so acutely that I knew I needed to access another 5 day IV methylprednisolone ASAP, as previously agreed with my more local neurologist if that happened. It unfortunately still took a week to arrange for me to receive it at the local day case unit, especially as I really wanted to avoid going via the ED due to Covid and hospital pressures. It was also the first time of these arrangements being actioned which meant it took a little bit more time.

So as I waited at home as we and my wonderful GP team chased the hospital and my consultant to make arrangements for me ASAP, my husband and I made the decision to film what happens to me when I flare / relapse, and how I responded to treatment – as an open education and awareness project for other patients and their family and friends, as well as any doctors who may be open to listen and learn more about arachnoiditis and spinal CSF leaks.

We mainly decided to do this because when doctors, patients and the general public do not understand these conditions it causes us sufferers so many many problems in being ‘heard’ and accessing treatment. Also – as anyone can see from the videos when I am in a flare – things deteriorate dramatically in a week. Arachnoiditis/ AA flares should be treated as a MEDICAL EMERGENCY if doctors want to stop more permeant adhesions from forming – which could ultimately lead to paralysis, partial paralysis, incontinence and irretractable pain syndrome.

So I cannot stay silent!!

Without my IV steroid treatment, steroid taper and ongoing every other day 5mg prednisolone (steroid) and 75mg diclofenac (anti-inflammatory) & 4.5ml LDN (low dose Naltrexone via private prescription), I have no doubt the adhesive arachnoiditis would have moved into more severe categories over the last two flares.

It thus felt time to branch out into videos to complement my writing in this blog.

So I have a YouTube channel now packed full of educational videos showing my flare, talking about symptoms and how I have done in recovery since. I will keep updating my channel to talk about my progress or new things I am learning about that are relevant to the condition.

Here are some of the relevant videos and links:

This is my case summary video that was reviewed by a NHS Consultant friend before I posted it. I wanted to create a short summary of my whole medical journey that would also be of interest to doctors to and could be used as a presentation in their educational meetings and lectures if relevant.

Here are a few other videos from each section and a link to each ‘playlist’. All the individual videos can be found on my YouTube channel.

I will now add one or two key videos from each list here:

ARACHNOIDITIS FLARE DAY 2 SYMPTOM EXPLOSION
ARACHNOIDITIS FLARE DAY 6 WHOLE BODY HORRIFIC PAIN EXPLOSION
IV STEROIDS DAY 1 AT HOSPITAL DAY CASE UNIT
IV STEROIDS DAY 4 AT HOSPITAL DAY CASE UNIT
FINAL DAY (5) OF IV STEROIDS. IN THIS VIDEO I ALSO DISCUSS MY ISSUES WITH SITTING DOWN AND HOW I DO SIT. I ALSO TALK ABOUT HOW GOING FOR A WEE MAKES MY HEAD WORSE.
STEROID TAPER DAY 1 & STORY OF 2017 FLARE & SEIZURE FROM CT MYELOGRAM & FLARE FROM 40ML EBP
DAY 10 OF STEROID & ANTI-INFLAMMATORY TAPER PLUS INFO ABOUT RESIDUAL SYMPTOMS AND MILD SCOLIOSIS
DAY 12 OF STEROID & ANTI-INFLAMMATORY TAPER PLUS INFO ABOUT PAST RELEVANT RADIOLOGICAL FINDINGS OF TARLOV, SPINAL/ BRAIN CYSTS, BONE SPURS & OTHER GENETIC NEUROLOGICAL ABNORMALITIES INCLUDING POSSIBLE MARFAN SYNDROME.
DAY 3 OF NORMAL ALTERNATE DAY STEROID & ANTI-INFLAMMATORY PROTOCOL. (5mg Prednisolone & 75mg diclofenac). THIS VIDEO ALSO INCLUDES INFORMATION ABOUT MY APPROACH TO ANTI-INFLAMMATORY AND COLLEGEN BUILDING DIET & NUTRITION.

That should be enough videos to give someone more of an introduction to my new educational and awareness project. I have learnt a lot over the past six years about my two radiologically confirmed diagnoses, even though I only knew I had had arachnoiditis all along too since July 2020. (It can now be seen on my original 2015 MRI’s 3 months after my accident and before any of my spinal procedures. I also experienced symptoms of arachnoiditis as soon as my symptoms came on after my ladder fall in January 2015).

PLEASE NOTE: ALL MY VIDEOS & WRITING ARE FULLY IN THE PUBLIC REALM AND CAN BE SHARED IN ANY CONTEXT OR PLATFORM WITH MY FULL PERMISSION. MY ONLY DESIRE IS THAT PEOPLE LEARN FROM MY CASE SO THAT OTHERS DO NOT HAVE TO SUFFER SO VERY MUCH FOR 6 YEARS TO GET RADIOLOGICALLY CONFIRMED DIAGNOSIS. SO PLEASE DO SHARE THEM WIDELY!

Thank you to everyone for all your support in this new educational project. I had 1000 views of my main case summary video in one week and I know many doctor contacts saw and shared it. If any doctors do want to know more they should feel free to get in contact with me and I can share more about the hospitals, teams, GPs and consultants I am under – IF they want to find out more because this would help their patients to get treated more quickly.

I now have two written radiologically confirmed diagnosis of arachnoiditis from two senior NHS neurologists at two Midlands NHS hospitals. I continue my medical journey under both their care.

Email me at: beckyhillblog@outlook.com

If my journey changes the outcome for just ONE patient then it is worth it all. So if you are that patient today – I do this for you and pray that the information I share may make your journey a little easier than mine.

“Let me be filled with kindness, and compassion for the one
For humanity. Increase my love”

– ‘For the One’ Bethel Music

For more posts on my arachnoiditis diagnosis and ongoing journey please click here.

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

Here is one of the best informative medical papers on arachnoiditis and adhesive arachnoiditis.

This video is one of my favourite intro’s to the diagnosis and treatment of arachnoiditis.

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.