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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8 thoughts on “When All That Remains Is Faith, Hope & Love”

  1. Thank you for your update. .. The care and commitment involved in preparing and posting it are huge especially as you manage your way forwards. Thank you again and we wish you and your family ..gentleness throughout this next stage of your pilgrimage together.

    Have a great Christmas time. .

    Liked by 1 person

  2. I’ve enjoyed your blog and I hope you fully recover! I’ll be traveling to see a neuroradiologist at Duke University soon for some (hopefully!) relief from a leak I developed after a lumbar puncture in 2012. You’re not joking about the body needing to recover. I’ll have to undergo cardiac rehab in order to build my body back up properly. Prayers to you and your family for 2016!!

    Liked by 1 person

    1. I hope it goes well for you Emily & that you too fully recover. Unfortunately many of my symptoms returned so we are back on the healing journey. Pressing forward with faith, hope & love x

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      1. I’m sorry to hear that, Becky. I know what it’s like to have your hopes dashed. We really need some more publicity and awareness for people suffering with this affliction. I feel George Clooney could probably do more, but I’m sure he is still suffering some as well.

        Feel free not to answer this question if it’s too personal, but have you been tested for connective tissue disorder(s) or have a family member who has hypermobile joints, etc? I only ask this because you and I (and others) who experience this have very similar physical characteristics and appearances. I had my husband look at the picture of you in your hospital bed with sunglasses and he was shocked at the physical similarities you and I have. I have met one other woman with CSF leaks who resembles us as well. There has to be some kind of connection and I assume it’s a genetic tissue condition. Another common factor is that many of us have taken the antibiotics Cipro or Levaquin, which seem to be catalysts.

        Good thoughts to you!

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      2. Thank you for your comment Emily. No I haven’t been tested for that or had antibiotics like those. I have never had hypermobile joints and don’t have any of the 5 signs of it or any of the associated symptoms. I have always thought my joints were kind of stiff – I have always struggled to touch my toes etc – could never get close! My sisters were generally more supple than me but I don’t think they have that either.

        Sent from my iPhone

        >

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