Mum

My Mum is awesome. Having her by my side, along with my Dad, made this whole hospital experience bearable. Hugging my Mum for the first time was emotional for the both of us, and I remember being very aware that, like when I hugged my Dad, I couldn't wrap my arms around her.

Despite this being the first time my Mum had flown such a long distance alone, she explained that during the flight she felt calm, happy to know that she was on her way and not at home waiting. I think that seeing that I was still me and was talking and acting the way I normally would reassured my Mum at the time; in many ways she had drawn the short straw by staying at home as she couldn't physically talk to me.

My Mum arrived on a Tuesday, a week after my Dad, and she came bearing gifts and cards from home. I remember trying to open one of the envelopes but it was too hard...overactive hands and weakness would hamper all my attempts at simple tasks, like opening a bottle of water. Mum had decided to spread the gifts out over the week, an excellent decision as everyday was 'Treat Day'!

Having my Mum around was not only great for obvious emotional support, but also for practicalities. No offence Dad, but your attempt at hair brushing was a bit scary! Not that I don't appreciate the effort, of course. Mum would go on to help me shower and other essentials, as well as paint my nails and pluck my eyebrows to make me feel more human.

Because I felt disgusting. Is there anything more unattractive than gym shorts, greasy hair and eyebrows so long they could be trained to grow into a beard? I think not. Another thing my Mum did was exfoliate my hands and feet. Ah, the sweet relief this would bring. Having been reading Melanie Reid's 'Spinal Column' in 'The Times' every week for a few years, my Mum had picked up some tricks. Melanie Reid fell off a horse in 2010 and broke her neck and back. Incredibly, she has since been documenting her recovery each week, which was part of the inspiration for me to start this blog. Mum had unknowingly been picking up tips by reading this column, and one thing that stuck in her mind was Melanie's exfoliating.

As I have mentioned I was experiencing unrelenting neuropathic pain in my hands, and eventually my feet. When my Mum first got a warm bowl of water and gently started exfoliating my stiff hands, it felt good. By the time she had finished and they had been patted dry, it felt like I had new hands. They were light instead of heavy, smooth where they had been rough and that cold burning sensation? Miraculously gone. Whilst this blissful relief only lasted for 5-10 minutes, it was nonetheless a wonderful feeling from that constant pain. If you are reading this and you are suffering from any similar neuropathic pain, I would recommend trying this out; if you find you get some relief repeat the process around 2-3 times a week (you certainly don't want to rub yourself raw!).

I am so lucky to have such great parents. My Mum would patiently exfoliate me and rub my aching shoulders. For the first time ever she could rub my feet, the one good thing about being paralysed; normally I am so ticklish I can't let anyone touch them! Mum would keep me up to date about everyone at home and the news and all those little things that would keep me going. She is such a strong woman, and it's amazing to think how she took everything in her stride. Thank you Mum.

As I was still in a ward on my Mums arrival, we would do the standard walk around the hospital grounds. Then, on Thursday we came back to my bed to find a bunch of nurses with boxes of my stuff...'We're taking you down to Rehab'. Eek!

The Hoist

My very first wheelchair was a beast. Known as a 'Tilt and Space' it was perfect as it could fully recline and was completely adjustable. My sitting balance at the time was wobbly so those first few walks (or rolls) around the hospital grounds with Dad were great because I could fully lie down for a rest whenever I needed to.

And I needed a lot of rest. Because I could do nothing for myself, the smallest thing like going to the bathroom would be a huge exhausting obstacle, often resulting in tears, near fainting or vomiting. Sometimes all three. To get to the toilet and shower for the first 3-4 weeks I was hoisted. The hoist...how does one describe such an evil yet useful contraption? It's basically a crane with an attachable sling/hammock and this is how it works in ten easy steps:-

Step One: Buzz for nurses and wait for ten minutes or more for them to find two people who could use The Hoist.
Step Two: Be rolled side to side like an uncooked sausage roll that needs longer in the oven, whilst they arrange the sling underneath you.
Step Three: Be hoisted into the air, usually at a wonky angle on the third attempt.
Step Four: Be lowered into the shower/toilet chair whilst head gets banged and toes get caught in crane device.
Step Five: Be pulled, pushed and lifted for the sling to be removed.
Step Six: Use the toilet/shower.
Step Seven: See Step Five in reverse.
Step Eight: Be lifted into bed with sling chafing legs, no knickers and some tears.
Step Nine: Step Two in reverse.
Step Ten: Repeat process as the whole thing took 45 minutes and you need the loo again.

I hated that frekking hoist.

Using the toilet and having a shower turned into a humiliating debacle and I am going to write honestly about it, because there would be no point in me writing this if I wasn't truthful. So here we go...poo. Everyone poos (yes guys, girls poo). As it turns out, when you are immobile your system tends to clog up, and the nurses and doctors are OBSESSED with poo. "Have your bowels opened today?" is something that I was asked around three times a day. As I wasn't moving around, they fed me full of laxatives:- Coloxyl with Senna tablets, Lactulose, Movicol and Pear Juice were to be taken twice daily. Lactulose is a very sweet substance, but tastes disgusting, as does Movicol which is a very salty drink. So GROSS. And Pear Juice? Bloody VILE. Sometimes I would be physically sick after drinking these...but they worked.

All the dignity I had left was taken from me when I could literally do nothing in the toilet. I would be heaved left and right to get my under-crackers off and a nurse would wait listening outside the door in case I fell or fainted off the loo. I would then be wiped by a nurse. I feel this should be embarrassing to write about, as basically everyone I know is reading this blog. But this happened to me and it was horrible, yes, but I'm not going to pretend it didn't happen because it did. I will not feel ashamed by this illness. For weeks, I could literally do nothing.

Showering was another task although I wasn't bothered about being naked in front of my nurses, but it was more the absolute exhaustion it would cause. I would sit in the shower chair whilst a nurse would wash me and my hands would, and still feel, very thick and slow in hot water (thankfully I can still feel hot and cold). If they washed my hair, which has gotten stupidly long, it would obviously take that much longer and I would be swaying in the chair by the end of it. Hoisting me into bed, naked and damp, was shameful and painful. The nurses would then attempt to untangle my hair and I would be completely wiped out, often succumbing to a nap straight after.

Everything I did was tiring. Dad would help to feed me and take me for little walks around the hospital, reclining me and ensuring I was comfortable. Our days would zoom by with the aforementioned tests in my previous post, and every tiny thing took so long. Dad kept me entertained with stories of his past and even started reading 'The Last of the Mohicans', one of his favourite books, to me. I remember one particularly bad morning, before we even had the wheelchair, and I was screaming and crying and banging my head on the pillow; I couldn't bare the thought of another day lying useless in bed and I was having a bit of a breakdown. Did my Dad get exasperated or stressed or flustered? Nope. He held my hand until I calmed down and let me cry it all out. Then he'd cheer me up by making up a song about GBS and I'd join in and we'd start laughing.

I would talk to my family at home each day, and my Mum had decided to book a flight. Before she arrived, my Dad and I were extremely anxious but also very, very excited. The day of the flight, Dad came to see me in the morning before going to meet Mum at the airport. I was having one of my first sessions with one of the physiotherapists, which was going pretty terribly as I recall she tried to get me to do squats on a tilt table (more about those later), when I heard voices. And suddenly there she was. My beautiful Mum.

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!

Wiggle Big Toe

"I have to go, my Dad's here, my Dad's here!" I put the phone down sobbing as my Dad came rushing towards me. I don't think I have ever felt both so incredibly sad and happy as I did that moment. I tried to reach my arms up to hug the man I'd not seen for seven months, but had to make do with a head tilt on his shoulder as he enveloped me in his arms. I had never seen my Dad cry before (although to be fair I looked a bloody state! ECG machine taped to my body, crazy sea salt hair and a hospital gown is enough to make anyone weep).

Laughing and crying we quickly gained composure and I heard about Dads thirty-five hour flight from hell. He actually happened to meet a doctor on his flight who knew about Guillain-Barré Syndrome; trust my Dad to get chatting to probably the only person on the plane who'd heard of it.

To have my Dad by my side made me feel calmer, for here he was to listen to all the medical jargon with me and support me. It was a bloody good job he arrived when he did as well, because that week I was to have an array of medical tests that were physically and mentally exhausting.

One stand out memory that shocked my Dad and I, a memory that made us realise how bad things had got, was when my Dad and a nurse tried to help stand me up so I could get to the loo on a shower chair. The day before I had done it but this time my legs completely collapsed beneath me; my Dad called for help as I lay in a twisted heap on the floor, crying, toes caught in the chair and nothing I could do about it. Several people appeared and I was lifted back into bed and from that day on for many weeks I said goodbye to dignity and hello to bedpans and hoists (but more on them later).

You know the scene from Kill Bill, where Uma Thurman is staring at her toes saying 'Wiggle big toe...wiggle big toe' and miraculously it wiggles? Well, in reality this doesn't work. As that second day progressed, so did my symptoms; I would stare at my feet pleading with them to move, for a toe to twitch, begging for a sign of life. Nothing. Then no leg movement at all. Then I couldn't lift my arms off the bed. I couldn't feed myself, move myself, roll over. All I had was that floppy arm flex from wrist to elbow, shoulder shrugging and head movement. Even my speech began to suffer mildly as time went on...the effort to talk was sometimes challenging.

It's a strange thing to loose all your independence in a matter of days. Imagine needing someone to do literally everything for you in the bathroom, someone to dress and undress you, someone to put a glass of water to your lips to drink. I actually found the worst thing was not losing the use of my legs, but actually losing all the power in my arms and hands. I couldn't distract myself with a book because I couldn't hold one...three chapters left of 'Game of Thrones' and I couldn't finish it...agony! Imagine being put in a position to sleep in, but after five minutes everything aches and hurts and you can't move at all. I am generally a very fidgety person, especially at night, so for weeks I had to keep buzzing the nurses to come and roll me over.

Having my Dad, and later on my Mum, around made everything better. Dad would feed me and move me, but best of all he took the piss out of me! We actually had such a laugh at the whole situation; a classic moment was when I was trying to screw the cap on a bottle of water, trying to use all of the strength I possessed with the only movements I had, and could I do it? No way! I kept dropping the lid because I couldn't feel it, and although of course there were many tears of frustration, having Dad around made me laugh. A lot.

Sure enough, my Dad soon became on friendly terms with all the doctors, nurses, patients, bus drivers and pretty much everyone he came into contact with. I would regularly be told 'Your Dad is so lovely!' and I couldn't agree more. He would arrive early in the morning and leave late at night and I felt, and still feel, very lucky that he was there for me from the start. Cheers Dad!

Weak

Waking up after my first nights sleep in Townsville Hospital I had a chance to really think about what was happening to me. It was Monday morning, I had strange tingly numb sensations in my hands and feet, I could hardly lift my arms and walking was a struggle. I admit, I felt sorry for myself. I remember thinking about my family and how worried they would be; and the chance that whatever was happening could get worse and I could even stop breathing...I couldn't quite take it all in.

I felt sick from fear and turned down an uninspiring breakfast of cornflakes. And then suddenly the day started. Four neurological doctors closed the curtains around my bed and began to introduce themselves, doctors that I would quickly become familiar with.
The thorough exam that they then conducted that day and there after many times a day for the first few weeks, became something that I knew backwards. They would start with my arms most times, seeing how high I could lift them, how well I could flex from wrist to elbow, how tight my grip was as I squeezed their fingers. On day one, I could still lift my arms off the bed by a few inches, however my grip was incredibly weak and my wrist to elbow flex had no control; my arm would flop inwards towards my torso.

They would then move down to my legs to see if I could bend and lift them, which again I could do at this stage, albeit with much effort and little strength. I remember being pleased that I could still wriggle my toes, although pushing my feet into their hands and then pulling them up towards my body was a massive chore. One of the doctors carried out the tests the others would be making notes. I was baffled by the way they recorded the results with numbers and words I didn't understand, although I would begin to understand their scoring system as the week continued (believe me when I say it was not as simple as 10 being strong and 1 being weak!)

The next step would be to use the reflex hammer. Still no sign of any reflexes in my arms or legs. The doctors murmured. They then used the pointed end of the 'hammer' to scrape the sole of my foot; could I feel that? Yes, but faintly, as if through layers and layers of thick skin. "Natasha, we believe that you are suffering from Guillain-Barré Syndrome but we need to do some further tests. GBS is a disorder that affects the nervous system and causes temporary paralysis. Your respiratory muscles can be attacked which is why you must tell us straight away if you find it hard to breathe or swallow.' I'd heard this the day before but it still didn't make any sense to me. I desperately wanted someone with me who could comfort me and tell me I'd be okay.

The doctors continued to explain more about GBS and asked me if I had been ill prior to experiencing these sensations, as it is usually caused by a viral infection, even something as simple as a cold can trigger GBS. The strange thing in my case is that I was not unwell before my toe went numb. I had no cold, no fever, no sickness. Each case of GBS is unique and there is still a lot unknown about what actually causes it, but to not be ill beforehand was unusual.
They explained that in the afternoon they would do a lumber puncture to test the fluid in my spine to help confirm their diagnosis. I welled up. I'd heard and read of the term 'lumber puncture' before and it was another thing to worry about.

That day I saw so many different people and repeated my symptoms a million times over. Time was doing that strange thing where it speeds up and suddenly it was time for the lumber puncture. Thankfully I had two nurses to hold my hands and distract me as I was manoeuvred into a foetal position. Two of the doctors I'd met earlier were back and one explained that he was going to inject me with a local anaesthetic into my lower spine which would numb the area. I whimpered "Please distract me" to my nurses, and they reassuringly chatted about this and that, their children and their normal lives, something that already felt far from my new reality.

After the anaesthetic I was told another needle was going in to try and get some of the fluid out. It didn't work. He pushed the needle in further and I could feel a dull pressure, stabs of pain and I began to cry. "I'm sorry Natasha, we're going to have to get you to curl up as tight as you can and we're going to have to numb the area and start again". I tried to be as brave as I could be, feeling like a small child. He started again. For what felt like a long time he poked and pushed into my spine until I heard him say it was working and the fluid was coming; I was so relieved when it was over and I had the sweet relief of morphine injected into me. Unbeknown to me at the time, that would not be the only lumber puncture I was to have that week.

As the day continued I progressively got weaker, and from being able to walk with assistance to the toilet, I could only do a stand transfer to a toilet chair. I didn't know that this was to be the last day I was able to stand for five weeks. Pain that had been hovering in the background began to breakthrough; the tingling in my hands began to burn cold, again a sensation that would strengthen over those coming weeks.

That night I was told the fluid taken from the lumber puncture could not confirm the diagnosis of GBS, however they were going to start treatment that very evening as if it was this as it could do no harm to begin. They hooked me up to begin administering intravenous immunoglobulins (IVIg) which would neutralise harmful antibodies and effectively stop the GBS from spreading further. I was told to expect to get physically worse despite the beginning of this - they were right.

I went to sleep that night focusing on one saving grace...the next day, my Dad would arrive.

Helicopters and Nunga-Nunga's

The helicopter crew. One word: Phwoar! Like a scene from ER they strode in looking purposeful and important, swiftly transferring me from bed to stretcher as casual as cats. One of them picked up my (rather large) rucksack, 'Crikey, what the hell is in this thing?! No wonder your crook carrying this around!' I should point out here that I have used a little poetic license, as rarely have I heard an Aussie say 'crikey' before, although 'crook' is a common term for being unwell.

Banter continued from the crew on the way to the helicopter and I laughed along nervously. The female doctor in charge turned out to be from London, and as I was pulled aboard she explained that I would have to wear headphones and that an observation machine would take my blood pressure and heart rate every fifteen minute. She said if I needed their attention I should just look up to them, being that I was positioned on the floor and could hardly lift my arms to wave at them. I was told if I found it hard to swallow or breathe I must let them know straight away; I would get used to hearing this over the next few weeks, not that having this repeated throughout the day made it any easier to hear.

Never having been in a helicopter before, I was very intrigued. As the blades started whirring above the doors were closed and suddenly we were lifted into the night. I'd been told to try and relax and sleep for the hour long trip, and as I couldn't see anything I thought I would attempt to do this. Of course, my brain would not switch off.

Now, I don't know if this was vanity or some kind of coping mechanism, but I spent the majority of the flight not worrying about this Guillain-Barré business, but instead worrying about my boobs. Having had to take off my bikini top for the CAT scan I suddenly realised I was in extreme danger of popping out. Christ! What would I do if a nunga-nunga came out?! Would I ask a crew member to pop her back in? What if i asked and they couldn't hear me and in gesturing with my head the other bazooma made an appearance? What if they didn't notice at all? What if they did notice and pretended that they didn't? These were SERIOUS CONCERNS. I wasn't thinking about the fact I could be paralysed and stop breathing at any moment.

Thankfully the girls behaved and stayed out of sight and suddenly we were descending, practically dropping to the ground and the flight was over. It hadn't seemed real that hour, and the fear that I had been pushing back started to rear it's ugly head. I couldn't quite believe this was actually happening. I had just been flown to Townsville Hospital because the doctors were worried and this situation was serious; thoughts of jiggling boobs disappeared.

As they transferred me to the Emergency Department and again easily slid me into a bed, I remember suddenly feeling utterly exhausted. The memory of this night is a blur of questions, observations, reflex tests, blood tests and eventually a transferral to a ward around midnight.

I spoke to my family, having discovered that my Dad was flying out that day and would get there Tuesday, and I explained I was in a ward called EMU. Now, this being Australia I found out much later on that my Mum was relieved I was moved to a 'normal' ward. She (and I) didn't realise it actually stood for Emergency Medical Unit, but at least she had some sense of relief at the time!
I fell into a deep sleep that night despite observations every few hours, and this was actually the last good night I remember having. For after that night, despite being in hospital and despite the incredible care I received from the start, things were about to get worse. Physically and mentally, a hell of a lot worse.