Rabbit Hole

Pain. We've all had it, both physically and mentally everyone alive has surely suffered pain, from those minor bumps to broken bones and broken hearts. To describe neurological pain is like trying to find the words to describe 'pink' to a blind person. Along with extraordinary back pain and muscle ache from lack of use, those first few weeks in hospital I suffered terrible, non-relenting pain in my hands. A constant cold burning started in my hands a few days after I began treatment and I would be constantly rubbing my hands together even though it bought no relief. My hands would feel stiff, swollen and twisted; I had no sensation and a tingling feeling like buzzing bees trapped under my skin.

When I look back at how much pain relief I was on, it's amazing I could even communicate. I'd had morphine before after major knee surgery when I was nineteen years old (I haven't had much luck with my legs!), however it was a tiny amount in comparison to the amount I was on when I first got to Townsville. I guess an average was around four morphine injections a day along with other pain relief, and whilst morphine makes everything mellow and distant, it did not touch the pain in my hands.

Lucky for me I hardly had a moment spare that first week so I had no time to dwell on my pain. I had neurological doctors, physiotherapists, occupational therapists, speech therapists, dieticians, medical students, nurses and an Infectious Diseases team come to see me frequently throughout each day. And this doesn't include all the tests! I had an MRI Scan, a Heart Scan, my second Lumber Puncture and a Nerve Conduction Study all in that first week.

When it came to the MRI scan I was told to lie completely still...lucky for them I couldn't move so that was easy enough. They put my head in a kind of Darth Vader mask after taking out all my ear piercings and zoomed me back into the scanner. It took AGES. Lying still and listening to the loud thumping of the machine was hardly relaxing, especially when they kept interrupting to say "Can you still breathe okay? You must tell us if you can't breathe." Yes, I think that is definitely something I would bring up. Afterwards I had to wait for what felt like a long time before I was taken back up to the ward to my ever patient Dad. Crying (those first few weeks I cried more than Alice when she got stuck down the rabbit hole) I babbled to my Dad about my aching and weary bones as he joked and comforted me.

The heart scan was a similar experience to the MRI, in that I had to lie still and listen to a lot of thumping. This time it was my heart beating away on the screen as the technician slavered me with gel, like an ultrasound for a baby, and spent time making notes and doing lots of important looking stuff. From the beginning I have had a high heart rate, averaging at around 120 beats per minute at rest. One day it was 180 and I was just chilling. I have to explain to each new person when they go to run for the ECG machine (I also have an irregular heart beat) that it's all good, it's just the combination of Guillain-Barré Syndrome and low blood pressure that makes it fast. They still like to do an ECG once in a while, just for fun.

At the end of the week I did have to have another bloody Lumber Puncture, which as I have mentioned in an earlier blog, is hardly my idea of a good time. My Dad wanted to sneak away for this part but stayed to hold my hand after seeing how scared I was...and also after hearing me hiss 'You're not going anywhere!' All in all, the second one was a bit of a laugh. One of my doctors, who had the biggest smile, was doing the procedure this time and after injecting my spine with local anaesthetic he swiftly started draining fluid. As the doctor from the previous lumber puncture came to have a look whilst it was being done, I took the piss and said 'This guy is much better than you, he got fluid on the first go!' Oh how we laughed and made jokes about the clarity of the fluid taken (it was completely clear, no drops of blood or anything). It actually looked like vials of vodka, and to be honest the amount I used to drink, it was probably just pure ethanol they were draining. Because my Dad was with me as well it was all a lot less traumatic than the time before. Unfortunately, it was far from the worst procedure I had to have, but that comes much much later.

The final test that week was a Nerve Conduction Study. Eurgh. All four of my neurological doctors were there and a technician; they'd explained what they were going to do before and that it didn't hurt at all. They lied. My Dad sat down after some chit chat and they began. They would put a needle, connected to wires and a computer, on part of my arm or leg and basically give me a little electric shock, where they would measure the delay in the electrically stimulated reflex. I remember understanding parts of this, for example they would say 'Well this here should be 9 but it's only 4'. Basically recording the prolonged or absent waves and the conduction, to test if it was slow or blocked. Interestingly each reflex they tested, even in the same leg, would show different signs of damage.

As my nervous system was damaged they would call this a demyelinating disease, because the myelin sheath of neurones had been damaged. They explained that some of my nerves were just bad on the outside, however I also had some axonal injury as well, meaning that the inner nerve was buggered as well. Imagine a normal wire with its conducting rubber on the outside; a bit of wear and tear on the outside doesn't matter too much, but if the inside wires get frayed or whatever, then you may have to invest in a whole new wire. Lucky for me, I wouldn't need re-wiring, but the recovery time would be longer simply because it would take a longer time for these badly affected nerves to heal.

Needles and electricity are a nasty match and I was very uncomfortable during the whole process. I was so lucky to have my Dad there to explain in normal speak the doctors diagnosis. Basically, my nerves were a bit fucked. The study confirmed their diagnosis of Guillain-Barré Syndrome, as did the second lumber puncture which showed high protein levels. My MRI Scan and Heart Scan were all good, a big relief.

The plan was to finish the intravenous transfusions to a total of five days, and then get me down into rehab to start the recovery process. I felt relieved that eventually I would recover, but the sinking realisation that I definitely would not be travelling those next few months left me devastated. I was still physically worsening at this stage as well and sleepless nights made me exhausted and depressed. Not to mention the hospital food, yuk!

Regularly talking to my incredible family at home and having my Dad around helped to keep me as positive as I could be, although usually I would have a roller coaster of emotions each day, from absolute meltdowns to making up songs about GBS with Dad (generally to the songs of 'Beauty and the Beast'). My Mum was talking about coming out as well but Dad and I were anxious about the added stress she might have flying out alone, and also we thought we'd surely be back in England in a few weeks. Writing this as I am, still in Australia eight weeks later, we were very bloody wrong!