8 months ago.
When things went wrong for a season.
A brain injury.
An undiagnosed spinal injury.
Months of craziness.
This is my update.
It’s for those who know me and it’s for those who don’t. I know some of you are finding these blog posts by searching online.
I want to tell you my story. In the hope that it helps you. Perhaps your own story involves injury and illness, brain or spinal injury. Or maybe it involves another type of storm.
We all face stormy seasons in our lives.
Life is a journey of discovery. We are constantly learning about ourselves and what is around us.
Self awareness is an important part of our growth. My husband and I are on a constant journey to understand life better: Why do we do what we do and feel what we feel? What is our purpose in life and how do we live it out?
We then hope what we learn might help others too.
The journey of self awareness is a humbling journey and yet it is a healthy journey. It helps us to process and break free from thoughts and behaviour that seek to control us.
The past 8 months have been one of the most intense personal journeys of growth I have experienced. As I wrote in Surviving the Storm Six Months On, I have come face to face with many of my weaknesses. Which has been hard and painful, but also a journey of discovering new strength.
So 8 months on.
Where am I now?
I would love to say that everything is fine. That I have made a full recovery and we can leave it all behind us.
But that is not the truth.
At this moment, I am writing this post lying flat, which still forms a significant part of my day. I was up at 6am, as it was the kids first day back at school. I rushed about getting them ready, dropping them off, shopping, sorting, cleaning etc. Then by about 10am I recognised that I needed a bit of ‘down time’ to ward off symptoms and to pace myself through the day.
If you have read my previous posts, know about CSF leaks or have spoken to me about it, you will know that the postural side of the injury is a key part of it.
Basically when you have a CSF leak, your spinal fluid leaks either from your skull or from the part of your spine that holds the spinal fluid.
We never located my leak on the various scans I had, but we assumed mine was probably a spinal leak. This means the spinal fluid leaks into your body from a tiny hole or tear in the membrane that surrounds your spinal cord.
This results in ‘brain sag’. The brain lacks the support of the spinal fluid and so drops in your skull when you are upright (either sitting or standing).
This causes various problems. The most reported symptoms are severe headaches and neck pain as everything gets squashed and stretched inside. But there are a multitude of other symptoms.
One of the key ones for me at first was severe dizziness and major balance issues (I could hardly walk without support for almost 3 months). This is so much better but still manifests as a spaced out/ cloudy feeling quite a bit.
I was diagnosed with a CSF leak about 8/9 weeks after my initial fall off a ladder (following an initial post concussion diagnosis). After finally being admitted to hospital with various symptoms, about 18 days lying flat in a neurology ward, having 3 MRI scans, which were inconclusive, and a lumbar puncture, which showed low pressure spinal fluid – I had a blind epidural blood patch. (They take blood from your arm and inject it into the epidural space in your spine, in the hope that the clotting helps to heal the leak and increase the spinal fluid pressure. Mine was a high volume blind blood patch, because they couldn’t find the leak on MRI scans, which is not unusual. If they know where the leak is then patches are often more successful).
All this treatment had a significant positive impact and, as I wrote in my first Surviving the Storm post, it brought a sense of normality back to my life. I could spend much more time upright. I was able to do most things and thankfully could drive again (although I stick to short journeys at present because my head can still cloud over at times).
Since then there has been a general gradual improvement.
I am still not back to where I was pre-injury and that is a challenge. I have days that are better and days that are more difficult. But the persistent symptoms are still a daily battle.
I have had to develop new routines that involve regular ‘lying down flat’ breaks. Often these are around lunch time and in the evening, although it varies a lot as I try and preempt what I need to do and lie down before and/or after going out.
I tend to find evenings harder generally. So on busier days I often spend a lot of the evening lying flat (either in bed or on the sofa – as long as my head is pretty flat). Less busy or less symptomatic days it is not as necessary.
I feel extremely blessed that in general the pain scale is nothing like it was around the time I was admitted to hospital. Back then it regularly reached 8 or even 10 out of 10 (comparable to having a baby ladies).
These days thankfully the pain is not as severe and takes longer to build up.
It is nothing like any headaches I had ever experienced pre-injury.
It’s more of an intensity, a pressure that builds up in the lower back of my head and in the top of my neck, leaving my neck feeling really stiff and painful and my head full and cloudy.
When I do lie down often that same feeling often drops to the bottom of my spine around where I had the blood patch.
Similar sensation; different place.
One way I explain it to others is it’s like having a really bad head cold and your head is so full of pressure that it’s hard to think and do things. If it’s a particularly bad one I also can feel it behind my sinuses which makes the sensation more head cold like.
This feeling varies in intensity throughout the day. Often, first thing, I feel fine. It then builds up to varying levels depending on what I am doing and how much lying down I have done.
As it builds up, things get harder. I might take some paracetamol or ibuprofen which helps a bit. Caffeine is also proven to help, so I usually get dosed up on that in the mornings.
As it gets worse I tend to go quieter as everything gets harder, both mentally and physically. The pressure, pain and stiffness builds, which is often coupled by a spaced out feeling and still sometimes a bit of photophobia.
Most of the time I will look fine outwardly. But if you see me when it gets really bad you might pick up on a spaced out, distracted, stressed or pained look on my face.
I often try and keep going for a while when I get like this, until I reach a point where it gets so bad I can’t think straight, the pressure and pain builds and I know I need to rest and lie down. I also try and preempt it and lie down before it gets too bad.
When I lie down there is an element of instant relief. I often say to my husband before I lie down I sometimes just feel like I want to go to sleep; you just feel wiped out. But soon after lying down I can think straight again, my head gets clearer and the pressure eases.
(This was often the way it was at the start, following my injury. I found I could have decent conversations with people if I was lying down. But I didn’t last very long and often couldn’t think straight for very long sitting or especially standing or walking).
The current physical symptoms vary in their intensity on different days, depending on how busy or strenuous the day is and even what time of the month it is (yes ladies it gets worse then!)
During the recent summer holidays things generally seemed better. I felt I had more energy and perhaps needed to lie down a bit less. It helped that I could take it easy in the mornings, lie in bed for longer and add in breaks where necessary.
This summer we have done a lot of clearing out and sorting thorough stuff, which I wrote about in my last post. That kind of work is quite physically demanding so I would rest more at the start of the day and then by the end of a day I usually had to lie down more.
It’s all about managing your time and energy reserves. I also spend time praying and getting encouraged with great words from the bible and other quotes. This helps keep my thoughts together and focus on good things through the tougher and more frustrating days.
I have been getting better and I want to hold onto that and keep believing for complete healing and freedom from this storm soon.
The storm has calmed but it has not yet fully passed. You learn to live with it to an extent and yet I also choose to believe it will fully heal in time.
My faith encourages me to not live life defeated or deflated. Hope always drives us forward. Even though it can be a humbling process balancing belief and reality.
I am deeply grateful for all the health and healing already attained and the sense of normality it brings.
Most of all I am thankful for the good that my experience will bring. There are always positives to be found, even in hard times. Even the darkest times can be used for good.
Whatever your unique storm:
Never let go of hope.
Never stop believing.
Never stop seeing the good, even when it’s painful.
Perspective is vital.
There is always something to be thankful for.
There are always others worse off than you.
We all suffer and feel pain in one way or another.
As a popular saying goes:
“Life is not about waiting for the storm to pass; it’s about learning to dance in the rain.”
I have decided that I will always find the ways and means to dance through life, even in the midst of the rain.
It’s not always easy, but it is the only way to live and thrive through both the ups and the downs of life. It is the only way to find the strength to survive the storm when it hits.
This is my story of a unique season in my life. A storm that has come, that is passing but is taking its time to fully leave.
I don’t know what storms you face? An injury, illness, relationship breakdown or bereavement? Perhaps your prognosis is much worse than mine? Maybe your storm is hidden from view?
But there is a way forward:
We can learn how to dance in the rain.
It is the only way to thrive in the midst of the storm.
I would love to hear about your stories and experiences. Please do leave a comment below or on my social media links.
You can read the first post about my injury here and my six month update here. I usually write my blog posts on my iPhone during my ‘lying flat’ times. Initially following my injury I could not even look at a phone or computer screen for more than a few minutes without feeling exceptionally ill. I am very grateful to be able to do this now.
To read more about my ongoing story of living with a chronic spinal CSF Leak click here.
Here is a brilliant 2 min animation about Spinal CSF leaks.
This is a wonderful 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 5 year battle with a spinal CSF leak. This kind of misinformation caused many delays, misunderstanding and great distress on my already immensely long winded and difficult medical journey.
This other in depth 2018 medical paper is about both low and high intracranial pressure syndromes and their similar and different symptoms. It also mentions cross overs with other headache types. When a patient suffers with a spinal CSF leak long term it can cause massive fluctuations in their whole pressure system both whilst suffering from a spinal CSF leak and following treatment. This is why lumbar puncture pressure readings and ICP pressure monitoring can prove an inaccurate disgnostic tool for SIH as this paper refers to as does the 10 myths paper. My initial LP reading was a 7 which was considered ‘evidence’ of low pressure by some doctors and normal by others.