Facing Disappointment After Disappointment But Pressing On Regardless…

“True hope is honest. It allows a person to believe that even when she falls down and the worst has happened, still she has not reached the end of the road. She can stand up and continue.” – Philip Yancey

I’ve now been on the roller coaster of chronic illness and pain (with a spinal CSF Leak) for nearly 2 1/2 years. During that time I have been almost fully bed bound for months at a time, then for many other months I have been able to live a part normal life where I can be upright enough hours to get the basics done at least.

I have not had one day feeling fully well for those 2 1/2 years.

It’s been tough!

I can hardly remember what it feels like to feel healthy or live normally. To be able to make plans trusting I can go through with them. To not be on this daily treadmill of dealing with the multitude of restrictions and limitations. Whilst simultaneously having to be extremely patient, letting go of what I can’t change and trying my best to stay thankful for all the good parts of life too.

Following about a year of slightly more manageable symptoms. Last week I tripped and fell flat onto the pavement, and within 24 hours of that fall it became obvious that the very minor accident had caused a complete relapse of my CSF Leak symptoms, leaving me again stuck in bed/ lying fully flat for over 22 hours a day.

And it’s honestly so disappointing.
Going backwards again instead of forwards.
To again be struck by the full force of this cruel condition.

The roller coaster is exhausting. It can take months and months to see any improvement in this condition then in one moment, in one misplaced step….

BOOM!

I am back to where I started.

And it is honestly wearing me out!

These are the words I wrote a day after the new fall, as it became clear that I was facing another big symptom relapse….

Every time I face a setback my heart sinks.
Every time I get worse again, I remember how good I had it last week when I was slightly better.
Every time I want to give up, I know I can’t, I have no choice but to keep on going.
Every time I want to sob and sob, to let it all out, but soon realise I shouldn’t because it will only make my symptoms worse.
Every time I picture the life I can’t live and have to let it go again.
Every time I hope for better days but worse days come instead.
Every time it tortures my motherhood that I can’t be the Mum I want to be.
Every time I can’t help my husband look after our home or do everything I want to for and with my children.
Every time my body rebels and forces me to have get flat again before it completely shuts down.

Every day I have to pick myself up, dust myself down and choose to keep on fighting another day.

Sometimes I get weary.
Sometimes it feels like I have nothing left to give.
Sometimes I wonder if I am really strong enough.

But what else can I do but get up and keep on going? Hoping and believing that one day things will again be better than they are now. And that I will one day be able to access the medical care I need to help me get better.

That is what I wrote last weekend as I faced the consequences and hard reality of that fall. They were the feelings and thoughts that bombarded me last week. They were the things I had to face but then let go of.

It’s really not easy to be back here again!

“Pain is no evil, unless it conquers us.” – Charles Kingsley

And yet something is different this time. Those thoughts and feelings didn’t plague me for as long. I have realised that within me I have reached a place of deeper freedom. The journey I have been on for over 2 years has taught me so much and made me so much stronger, whilst simultaneously being more aware of my weakness.

As the condition has beaten me down yet again, I have felt a deeper resilience rise up from the inside – despite it all. A deeper peace to keep on letting go.

I almost feel a shout within me of ‘come on then, bring it on!’
A battle cry that I will not give in, I will still keep living here.
An act of throwing off the burdens and obstacles coming against me.
A determination to make the best of things that I can.

So that is what I am choosing to do. However long this cruel condition keeps knocking me flat. However much it tries to mould my life around its limited perspective. However much it tries to feed me with despair and taunt me with the life I could be living.
However much it tries to bind me up in it’s web of disability, restrictions and chronic pain.

I have to decide that I will not let it rob me of who I really am and who I am really meant to be.

If being Becky Hill means working with this rather than wearing myself out trying to constantly fight it, then I must work with it for as long as I have to. Looking for the opportunities, rather than focusing on the limitations, seeing the beauty still around me, even in those moments it feels unbelievably hard. Because….

  • if I cannot live here, then how can I ever ask anyone else to live through their own very challenging season either?
  • if I cannot find a life amidst all the restrictions, then how can I teach my children to do the same?
  • if I give up the fight then how can I encourage and draw out resilience in others?
  • if I cannot find joy in the midst of suffering then does my spirituality mean anything to me?
  • if I cannot love deeply and see outside of my self, even where there is pain, have I even found true love at all?

So seeing as I have relapsed again as we head into summer, we made our own declaration to this debilitating condition. We brought a garden sun bed that goes completely flat so that if I have to spend my days lying flat, I can do that outside as well. Amidst the garden, the sun, the natural world, the cool breeze and the birds singing their wonderful distinctive songs.

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So I will play card games with my family outside whilst lying flat, I will keep sharing my heart with my husband, I will ask my kids all about their days. I will continue to write, I will read books that inspire me, I will try to connect with and encourage others with my words. I will listen, learn, grow and change. I will enjoy the presence of God and allow Him to touch and change me from deep in my soul.

This condition has and will change me, that is inevitable. But I am determined for it to be only for the better. Because I will not let my spinal CSF leak completely devastate mine and my families life. I will not let negativity overshadow our love for one another. I will not let it steal my peace, love and joy. I will not let it take me down and pull me into the never ending pit of despair.

Instead I will rise up from deep within and find a way to live with all the restrictions, to enjoy the simplicity of life, to appreciate everything I do have and can do, and love everyone I can with all my heart.

“Pain is inevitable, but misery is optional!” – Andre Olivier

So it’s true: last week I tripped, fell and relapsed yet again. But last week I also chose a better way forward. I cried, I faced the pain and loss, I recognised the challenges ahead. I am not in denial, I am more aware than ever about how difficult this will be. There is never a simple way forward in this relentless CSF Leak game.

But after falling I had to get up again. I had to choose to live my life with even more determination and resolve. I had to make a decision…. to not give this condition permission to destroy my life.

Instead I must use it to build more resilience, increase my compassion and help me feel another’s pain. Use it to embrace time to write, read, learn and inspire. To declare that we can still have a life even when so much is stolen. We can still have purpose even when we are mainly stuck in bed.

So let me learn to endure this trial for as long as I have to. Let me find a way to tell another …. ‘yes this really is so so tough – but it can be done, we can find ways to live life like this.’ So let me choose to let go of the life I thought I should live and embrace the life I am currently living and give all I’ve got to truly living here.

Let my heart be moved and my mind be transformed until – rather than complaining – I can sing a new song of thankfulness and joy. Rather than focusing on all that’s lost, I will see all that can be gained. Rather than pulling others into my despair with me, I can choose to love and encourage others even in the midst of my and their pain.

It’s then that purpose can still be found in suffering. It might not be the purpose we envisioned for our life, or the path we would have chosen for ourselves or our family. But this is the life we currently have. So with a deeper resolve and a new patient resilience I will declare that I am finding a way to do this. We, as a family are finding a way to do this.

For as long as this journey takes.

I may not be able to do much. But I still have my work-in-progress story that is being written. It’s taken me on a tangent I never envisioned or imagined. But it’s still my story. Although I cannot control every part of my story I am the greatest contributor to the style in which it is being written, formed and shared.

So let me write the best story I can. The real story. A story of strength in weakness and love conquering all. So I can keep encouraging you to keep writing your best story too.

“Our story is what we have to offer the world…. I wish I had a different story than the one I just lived through, but I am so grateful for the story that has made me who I am today. Even the pain. Even the wounds. The sadness was real. The brokenness deep. The scars mine. It’s my story. It’s who I am. It’s how I’m becoming.” – Erwin McManus (The Artisan Soul).

This is my story!

It’s my story of who I am. It’s my story of who I am becoming. But it’s definitely a work-in-progress. I wonder how the book of my life will unfold? I wonder what it will all become in the end?


To read more about my 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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