“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.
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
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.
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.
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.
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.