It was 3am Tuesday morning, 7th September, 2021.
I desperately needed to go to the bathroom, so I rolled out of bed, the way physiotherapists had always shown me to do.
I reached for my awaiting crutch and made it to the ensuite, not without pain, with my usual pain.
I got back into bed as soon as I could, swallowed a mouthful of painkillers and looked forward to a few more hours sleep.
The Difference Three Hours Can Make
I woke at 6am, happy to have achieved another 3 hours sleep. My body was screaming though. It needs to get moving after being in one place all night and although pushing through the pain in order to move looks and feels cruel, I have no choice.
Until perhaps there is no choice at all!!
I rolled over onto the side of the bed just like I did at 3am. I felt quite weak but thought nothing of it.
As I grabbed my crutch to elevate myself off the bed, I let out a huge cry. I couldn’t stand. As I tried to persevere my entire left side collapsed, my left leg was incapable of lifting off the ground and I was shaking from head to toe. Something was wrong.
Something was very wrong!
I quickly collapsed onto the bed and cried out to my husband who was still asleep next to me.
I needed to get to the bathroom and just thought maybe I needed his help. As he abruptly awoke he realised we were in the process of an unexpected bone disease episode. I was in a bad way.
He came to my side of the bed to try and help me up. The pain was excruciating. On the first attempt we failed, same with the second attempt.
On the third attempt we decided to try the walker rather than crutches.
We got me on my feet but this pain was not just an aching joint or bone pain. It felt like a major fracture somewhere. I was in physical shock, shaking from head to toe and unable to move my left leg forward.
Through pure determination and desperation at needing to go to the bathroom, I knew I had 2 choices:
- Try and push through the pain, or;
- Ring an ambulance immediately
In hindsight we should have chosen the ambulance option, but sometimes this disease can misbehave and then settle. I wanted to give it an opportunity to settle.
I pushed myself up on the walker through persecuting pain. I couldn’t sit upright so every moment had to be choreographed to adapt to the situation.
I have no idea how I made it to the bathroom. I was pushing through the same level of pain I experienced when my femur broke. It was crazy.
As I tried to lower my collapsed body onto the toilet seat, my husband and I soon realised, I’d lost the ability to sit at a 90 degree angle. I could only sit at a 20 degree angle and not without pain causing me to scream like I was being murdered.
I didn’t know what to do. I didn’t want to be rescued by paramedics while sitting on a toilet seat. Plus I couldn’t stay in this position as the pain was causing me to begin to pass out.
All I could think was I needed to get back on the bed. I felt if I was completely horizontal, and completely still, the pain would eventually subside.
Oh my goodness, as I look back on this moment, I realise so much could have gone wrong. So much had gone wrong but I was in such a precarious position and my husband’s face was full of horror, worry, fear, sickness and so much love.
This was the worst moment of my bone disease to date, even worse than the day my femur broke. We weren’t on our on for the femur crisis. My Aunty and Cousin were visiting from the UK and she was a Registered Nurse.
This time it was just the two of us.
Determination, Courage, And So Much Prayer
“Please Lord, help me stand up. Please help me use my walker to step forward. Please help me take 3 more steps. Please help me collapse on the bed. Please give us wisdom. Please keep me safe”
It was nothing short of a miracle, I eventually found myself on the bed, exhausted, lying diagonally and wondering how I was ever going to move again.
As the pain began to calm a little, I somehow shuffled to my side of the bed, realising this was likely going to be where I should stay until further notice.
I stayed like this for 24 hours. We were praying this was a glitch and I would wake the next day able to put this horror behind us.
What we hadn’t quite thought through with our “24 hour waiting period”, was how I would be able to go to the toilet.
I have a permanent colostomy, thank goodness, so one less problem to navigate. The bladder still worked normally so we had a slight problem.
We tried once more to get me to the bathroom but, by this stage, my paralysis in my left leg had worsened and my spine physically wouldn’t let me push through.
Even raising myself off the bed, holding my walker and standing in one spot, was near nigh impossible.
We had to work out a plan to empty my bladder and not ruin our bedroom. I couldn’t use a bed pan as I couldn’t move my body in the way necessary to use it.
So, we hatched a plan….not a great plan but a plan of necessity and desperation.
My husband placed a large flexible tub next to the bed, with large heavy duty plastic garbage bags underneath it. We placed my walker over the tub. We covered anything we thought might be in danger of getting infiltrated by my efforts with the plastic and towels,
A plan is a great thing, executing a plan well, is often a whole different story.
Long story short, we did it, I don’t know how I did it. My screams were so loud I was seriously worried the police would be called.
Mission accomplished, bedroom intact, I remained on my bed, flat on my back, for 24 hours. All the while hoping and praying for a miracle.
Prayers are never in vain, but I was pretty sure my miracle was not going to be instantaneous.
24 Hours Later
8th September, 2021….nothing had changed.
I didn’t want to go to hospital. I knew I would end up there for ages as conservative management, no matter what new damage had occurred, was the only option left.
My Medical team all agree I need urgent spinal fusion surgery. For anyone else it would be a priority. My bone disease, and the terrible integrity of my bones, make this option a death sentence for me. It is out of the question.
I decided to ring my Spinal Specialist to get his advise. He knew my situation inside out and my ability to manage it well at home. I trust his judgement implicitly.
He wanted me to ring an ambulance and get to the hospital. Of course he did….it was the right thing to do.
To be honest all I wanted at this stage was a catheter. My toileting process was not sustainable, plus there was no way it was right to try for another 24 hours under those circumstances.
The LORD himself goes before you and will be with you; he will never leave you nor forsake you. Do not be afraid; do not be discouragedDeuteronomy 31 v 8
Ambulance To The Rescue
I called the ambulance while my husband frantically gathered my hospital emergency bag and my box of medications. I have everything sorted for these moments as we never know when they’ll occur. At times it’s like living on a knife’s edge.
The ambulance arrived within 10mins. I was greeted by 3 lovely young female paramedics. They quickly assessed the situation and realised there was no way they could transfer me to a wheelchair as I couldn’t sit up.
Our home is lovely but it is cottage size. It’s got great access in the open plan living area to get a stretcher from the ambulance, through the double garage, into our home and outside our bedroom door. Getting it into the bedroom, up against our bed so I could be transferred, is something else altogether.
With my husband taking out furniture and the paramedics determined to get me to hospital, they managed to get the stretcher on the opposite side of the bed to where I was lying.
I now had the horrific task of shuffling across the bed onto the stretcher. There was no way in this amount of space we could use a pat slide board.
I lay flat on my back and, with every amount of strength I could muster, I slowly edged my body towards the side. I eventually did it, however sliding onto the stretcher itself was beyond excruciating.
The relief of finally being on it was amazing.
I took a good look at my bedroom, my sanctuary, and realised I may not be home for a little while.
My chronic disease had entered an acute stage. What lay ahead was all unknown.
I waved goodbye to my husband as the doors of the ambulance closed between us.
I think we were both relieved, scared and so unsure of what this all meant for our future.
Life was again about to change and the roller-coaster ride, to transport us to our new path, was already starting.
Upcoming Blog Post…. “Hard Work In Hospital”
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Australian Aspire Awards 2020 Nominee – Awarded Medal of Recognition for Individual Best Achievement Community Advocacy.
Thank you to Arthritis Queensland for the nomination!