When All That Remains Is Faith, Hope & Love

“Three things will last forever—faith, hope, and love.” – 1 Corinthians‬ ‭13:13‬ (the Bible)

One thing is for sure; I am not going to forget 2015 for a while. I think for our family it will be known as ‘that year’ for a long time to come.

What a journey it has been!

When I started my blog at the start of this year I didn’t expect to be writing about all the very real and immensely difficult challenges we would imminently face this year.

When your life is stripped back it reveals what is at your core. What comes out of you during tough times shows what you are truly made of.

It’s a truly humbling journey.

Yet, through all the chaos, the pain, the distress and the brokenness this year, three things always remained. Many times they were all I could hold on to. Some days I had to dig deep for them; sometimes despair tried to take their place. But despair and fear always ultimately failed to take me down, because I knew these three things would always be there.

FAITH
HOPE
LOVE

heart shaped  in sand

They are unchanging powerful forces at work within the universe. The only eternal truths that were consistent even when so much was going wrong.

They are the divine characteristics of my creator; my father and friend who was always there with me, helping me, teaching me, guiding me and strengthening me.

A light in the darkness.
Peace in the storm.
Hope in despair.
Strength in weakness.

The still small voice bringing calmness, love and direction when life seemed to be falling apart.

If you have followed my story over the past few months you will know that following a fall off a ladder in January, I was diagnosed with a number of neurological conditions at various different times; conncussion, post concussion, whiplash, low pressure headaches and a CSF leak.

Following my relapse the Neurologists decided that most of my symptoms could be directly related to a CSF leak/ low pressure headaches and I perhaps never even had a concussion. However, this is all very difficult to prove, especially because none of my MRI and CT scans showed evidence of any diagnosis.

I finally did have another high volume epidural blood patch after much waiting and debating from doctors.

This procedure has helped me immensely.

I am very thankful for the neurologists at our local hospital who fought on my behalf, for weeks, so that I could access that treatment. All the delays were immensely difficult as well as frustrating and made my symptoms worse, but I always had to acknowledge that my case was unusual and doctors are still learning about CSF leaks and low pressure headaches. Hopefully my case will at least help things to change locally as the doctors learn more about the condition.

Finally a wonderful consultant anesthetist at the hospital agreed to try a second blood patch for me. I am so very thankful for that doctor who took great care over the procedure, was willing to learn about my condition and valued me as a person as well as a patient.

I had 28ml of my own blood injected into the epidural space in my lumbar spine, which is shown to often improve spinal fluid pressure levels and help heal any leak. As it was slowly injected into my spine, towards the end of the procedure, I felt the pain in my head and neck lift which was a great encouragement to me.

The procedure showed initial success and I saw the benefits straight away, but I still faced a massive physical, mental and spiritual battle over the following hours, days and these past two weeks to press forward into recovery.

When you have been ill for a while, especially following a relapse of symptoms, it’s hard to dust yourself down and get back up. There is a major mental battle to face when being upright is connected to so many horrible symptoms.

The blood patch went well but my body was completely out of condition because of the weeks in bed. Even finding the strength to get out of bed and spend time upright was a challenge, even though the direct low pressure symptoms were much improved.

You have to face a lot of fears. Fears of the blood patch failing, fears of relapse. Fears that come into your thoughts because of the continuing aches and pains that followed as my body began to heal and recover from the weeks/ months of trauma and weakness that had gone on in my body. Every ache and pain doesn’t suddenly vanish; some only improve as you get up and get back in shape.

Fear is not easy to face.
It’s not easy to overcome.
It eats away at your peace.
It causes additional symptoms in your body.
It makes recovery harder.

I realised that I had to overcome the fear and anxiety that can develop in relation to getting up and being upright again. Fear and anxiety can in itself bring new symptoms which mimic some of the actual low CSF pressure symptoms. The difference is these are improving as I face them and push through, whereas I was unable to do that with the actual low pressure symptoms.

The way I did this was to fill my thoughts with only things that can truly beat fear and anxiety. These are FAITH, HOPE and LOVE.

FAITH and FEAR are opposites.
Faith believes that good will prevail. Fear focuses on the negative possibilities.

“Fear is placing faith in the ‘what if’s.” – Craig Groeschel

Fear kept knocking on the door of my mind with all it’s ‘what if’s, worse case scenarios and statistics.

Our fearful thoughts alone are enough to keep us bound and stuck where we are. However, over the years I am learning how to fight fear. I am learning how to overcome it.

I knew that my God would help me. So I threw myself onto the one thing that never lets me down – FAITH.

I knew I couldn’t do it alone. I was worn out, scared that my debilitating illness would creep back, that it wasn’t or isn’t all dealt with.

But in the midst of it I knew that I could not listen to all the fears because they would tell me that I was safer staying in bed, that I shouldn’t risk getting up and pushing through. I did still have to rest a lot, but I also had to help my body fully recover by getting up and out.

Staying in bed

I had to listen and rely on three things that are always constant and provided the wisdom I needed and still need to move forward.

Faith
Hope
Love

heart shaped  in sand

I knew if I could take hold of these truths I had NOTHING to fear. They empowered me to face my fears, one by one, and begin to overcome them.

I immersed myself in truth. I spent all the time I could listening to truths from the bible and stories of faith that encouraged, inspired, strengthened and brought freedom to my body, mind and spirit.

I turned off distractions and focused on everything that built faith, spiritual strength and hope.

I knew that I could only fight fear with faith.

Faith is a powerful force.
It has attitude.
It is unwilling to back down.

It has energy to face the darkness of fear, worry and anxiety. It speaks words of love, hope and truth. It builds you up and spurs you on to press forward.

It’s calming, peaceful yet firm voice pushes you forward and says, “you can do this, you can overcome this, keep going.”

Faith gives you momentum to press through discouragements and keep going.

However;
Faith does not exist on its own.
You must feed it.
You must give it attention.
So it can be strong enough to withstand the test.

Faith is supernatural.

It is profound but it is also very real.

When the unseen becomes more real to us than what we see around us, faith is truly alive. It leads and guides us; it teaches us how to behave and act. It helps us to make decisions and brings certainty when the way forward is not clear.

Faith can bring security and stability, even when things get tough and the way forward is unclear.

Faith can also bring healing and restoration if we will let it. It helps to find a way through and will not accept defeat.

Faith fights!
Faith energises!
Faith empowers!

It is because of faith and good doctors that two weeks after my blood patch I am doing really well. I am building back my strength and most of the residual symptoms are leaving. Life is returning to a new normality. New because I am a new person, but a good new because I have grown and learnt so much.

I am building up my physical, spiritual and mental strength. I have discovered a new sense of freedom in my life. I am breaking through more of my fears and learning to embrace this present moment and not allow the ‘what if’s of the future to steal my daily contentment.

A few days ago I went to pick my daughter up from school. As I walked down the school path the heavens opened and it began to pour with rain. My first reaction was “Oh No!” Then very quickly instead I thought – “who cares… let it rain, let it rain hard! I get to walk, outside, on my own and pick my daughter up from school. No rain is going to steal the immense joy I feel in my heart in this moment.”

I never want to lose the wonder of health; of being able to breath, walk, talk, live life, enjoy blessings and be a blessing to others.

I am learning to be so immensely grateful for the small things. To find joy even when it pours with rain, to dance in the midst of the storm.

I honestly don’t know how I could have faced the past year without FAITH. I am not sure I would have survived without HOPE. I definitely couldn’t have overcome without LOVE.

I have realised more than ever before that these things are what are most important. That without my faith and relationship with God this year would have been unbearable. Without His loving hand guiding me and helping me, I would not be where I am at now.

So I am very thankful. Thankful to know Jesus. Thankful for faith, hope and love – in all its shapes and forms. Thankful for friends, family and all the support I have been given.

And I am thankful for life. To be able to live and to love. To be able to get up, be with my family and begin to do all the things that have been snatched from me for so much of this year.

In 2015 I have:
learnt,
grown,
struggled,
faced,
embraced,
survived
and thrived.

It has been immensely difficult but I have been sustained through everything because of these three things:

FAITH, HOPE & LOVE

And nothing can or will take them from me.

“Three things will last forever—faith, hope, and love—and the greatest of these is love.” – 1 Corinthians‬ ‭13:13‬ ‭(the Bible)


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.

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.

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The Power Hidden In Vulnerability. 

“We may impress people through our strengths but we connect through our weaknesses.” – Craig Groeschel

Over the past few weeks and months I have written about a current tough season I am walking through. In fact, I am not really ‘walking’ through this season. I am ‘lying flat’ through this season.

A perpetual time of enforced rest, because my body can’t currently function any other way.

I am back in hospital again for the 4th week so far in 2015. I am again seeking treatment for the CSF leak (Spinal fluid leak) I got from a fall off a ladder at the start of the year.

Having a CSF leak means there is less spinal fluid to cushion my brain. Subsequently my brain drops in my skull, meaning if I sit or stand I get a whole range of crazy neurological symptoms labelled ‘a headache’ by some.

But I am telling you now ‘headache’ is not the right term for what goes on my head (& body) when I sit or stand. 

A better term is torture! 

After a crazy past 6 weeks or so of being an inpatient in hospital for a few days, then waiting for treatment as an outpatient for a few weeks, I have now spent another full week in hospital. Lying flat all day in a hospital bed that is always on a tilt head downwards to alleviate symptoms.

I only get up briefly to use the bathroom and only sit up to eat my main meal because I literally cannot function or cope physically or mentally with being upright for more than 5-10 mins.

Before the end of February this year, I never imagined such a condition existed that was so effected by posture. I could have never imagined how debilitating a so called ‘headache’ condition could be.

I never would have thought how complicated it can be to get treatment for this unusual condition. How much you have to wait due to differences of professional opinion about treatment and theories about how well treatment works.

Five weeks ago I was meant to have a second epidural blood patch procedure in my spine as an outpatient. Following 5 weeks of disagreements between neurologists and anaesthetists I am still waiting for this treatment.

In the meantime they have tried an occipital nerve block (steroids are injected into the top of my neck/ bottom of my skull) which failed to provide any relief and medication which just made me feel awful.

This definitely wasn’t how I intended to spend most of 2015! Having always been a person to get on with life, face difficulties and overcome them, this journey has been somewhat different and definitely challenged me to the core of who I am.

I have reached a new level of weakness. 

This is a photo of me lying flat in my hospital bed. I have sunglasses on due to photophobia, but I am still just about smiling!

I was in a bad way when I arrived back in A&E a week ago for the fifth time this year. It took about 20 mins to get here in the car, so by the time I reached A&E I had far surpassed the current time I can manage upright.

So after waddling into A&E, which was packed out, scanning to see there were few seats available (which I wouldn’t have been able to sit on anyway upright) I just opted for lying on the floor. I had to cover my head to block out the light and noise and by then I was twitching and shaking.

My husband said I got quite of few looks – unsurprisingly. 

Thankfully they found me a bed and took me straight in and I skipped the whole triage thing. The fact I was still under neurology probably helped. 

It took quite a while to recover from that whole ordeal, I was so out of it, struggling to communicate, in pain and totally exhausted. I found it hard to eat or drink, which made everything worse, so they put me on IV fluids and IV paracetamol to try and help me out.

After weeks of managing symptoms at home lying down all day, I just couldn’t cope with it anymore on my own and had to resign myself to being readmitted and hope treatment would progress better as an inpatient.

Do you ever face times in your life where you feel like things couldn’t get much more difficult?  

But then they do and you have no choice but to keep on going, hoping, praying and believing that the storm will clear soon?

It’s been a tough year. 

It’s hard when you think you have overcome something to find it has come back and things seem even more complex.

“…. And once the storm is over, you won’t remember how you made it through, how you managed to survive. You won’t even be sure, whether the storm is really over. But one thing is certain. When you come out of the storm, you won’t be the same person who walked in.” -Haruki Murakami

To be honest:
I am tired of it all!
I am weary of all the battles!
I am frustrated at the delays!
I am exhausted by the crazy symptoms!

I daily think….
“Can this all be over now?
Surely I have endured enough?
It’s really got to get better soon?”

But for now, it doesn’t. 
In fact, each day of waiting it gets harder.
The simple becomes more complex.

And I am stuck in the middle of a big debate about my treatment.

Sometimes all you can do is
Hold on. 
Just hold on. 

Through the questions.
Through the complexities.
Through the battles.
Believing that there IS a way through and that it’s coming soon. 
  Two weeks ago my husband did his back in. In possibly our lowest ever point as a family, Matt injured his back and ended up having a back spasm so severe that he passed out.

He has always had a weakness in his lower back, but probably the weeks of strain in having to work in a very demanding job, care for me & the kids, fulfil his responsibilities at church and look after our home took it’s toll.

That moment was a very dark moment. He had pulled something in his back slightly earlier that day and tried to rest it off. Our poor kids aged 8 & 10 were trying to help us out, as I was already stuck in bed most of the day.

This meant I was trying to get up and do a few more things to help and find out what was happening with Matt (which wasn’t helping my symptoms). 

His back then went into a full blown spasm, like no other he had experienced before. In just about recovering from that he made his way upstairs and in reaching the bed his back went into such an aggressive spasm that he passed out from the pain, thankfully whilst bent over the bed.

I was trying to help him but because I had to be upright I was really struggling. As he passed out I called 999 but could hardly speak to them myself because after a few minutes of being upright my speech and ability to communicate can become a problem.

Thankfully he came round after a few minutes so we didn’t need an ambulance. I managed to get back into bed. The kids were scared and in tears because both their parents were unwell.

In that moment of turmoil I managed to call our wonderful friends (who are also our church Pastors) and muster up the strength to literally mumble what had happened, whilst in tears, exhausted and desperate.

We couldn’t cope anymore. 

They came straight away and brought calm, light and love in our dark hour.

As I have written over the past few weeks, I have already felt at the end of myself recently. Then Matt hurt his back and we were both stuck in bed for a few days before he started to recover.

Talk about vulnerability and weakness. 

I am so thankful for friends and family who helped us during those difficult days. We literally couldn’t have coped without them. 

It was a real time of embracing humility, as people popped in and out to help us and come up to see us both stuck lying in bed. Whilst they sorted out the kids, cleared up, cooked, prepared meals and generally brought love, support and encouragement. 

There is nothing like being stuck on your backs to shatter your pride and dignity. It is humiliating to talk to people whilst lying flat in bed.

BUT

There is also something wonderful that comes from vulnerability. There is a deeper power of connection that comes when you are weak. 

When there is no where left to hide.

You are just you. 

In all your weakness and brokenness.
No frills.
No pretence.
Exposed.
Vulnerable. 

Yet loved, looked after and cared for. 

That is the power of vulnerability. When people accept and love you for who you are, when you are broken, weak and can do nothing for them. 

It brings a new level of connection. A powerful moment that will not readily be forgotten. 

To be seen in weakness is to be truly seen. It is not easy. We want people to see us strong and able. However, weakness and frailty is a significant reality of humanity.

It opens the way for the deepest connections; both with other people and with God.

“Strange how people who suffer together have stronger connections than those who are most content.” – Bob Dylan

There is a deep contentment that can come when our lives are stripped back. A ‘letting go’ that has to take place. You have to lay down the reins of your life and trust that good will prevail in the end.

To be seen in weakness is to be truly seen.

You may not be the person you once were. DOING what you used to DO. LIVING as you used to LIVE. Instead, you can only BE the person you really are NOW, in THIS moment and find a way forward in the storm.

So I have again reached THAT point of weakness. A moment when you realise that in some seasons instead of fighting weakness and challenging circumstances  you have to learn to simply flow with it and say:

Let the storm rage.
Let my vulnerability be exposed.
Because it is there I discover strength in weakness. 

I discover who I REALLY am
And have to learn to JUST BE ME.

Simply
Uniquely
The REAL, weak, exposed and vulnerable ME.  

“People who are real, who are genuine concerning weakness as well as their strengths, draw others to them. They engender trust. They are approachable. And they are a breath of fresh air…” – John Maxwell

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.

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.