“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.
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
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.