Knickers Ahoy!

One word to describe being neutropenic - palaver. It was all systems go to figure out why my white blood cells, my neutrophils, were pretty damn low. It was really important that I wasn't put at any risk to infection as I had no cells to fight anything off, so the following precautions were taken:-

. I was moved back to a private room
. I had to wear a surgical mask whenever I left my room
. All staff were to wear gowns, gloves and masks when entering my room
. All equipment in the gym was to be wiped down with antiseptic wipes before I could use it
. I was not to enter the dining room but eat alone in my room for all meals
. I was taken off all medication that could make me neutropenic; it was goodbye to Gabapentin, my nerve pain relief, and on to Amitriptyline instead
. I was to have blood taken daily

The main problem was, the nurses did not seem to have a set procedure for what to do if someone is neutropenic. It seems ridiculous, but depending what nurses were on shift the procedure would change. Sometimes they wouldn't wear gloves or gowns or a mask, and as one nurse said to me 'I'm not ill, I don't have anything'...so, she could predict when she would become unwell? My lovely Norwegian nurses would always gown up completely when they saw me as a precaution, but lets face it, the hospital had air vents. I had to take my mask off to eat and drink. The germs would find a way!

It made me a bit paranoid at the time actually, I felt like I could see germs everywhere and I was scared of the smallest of sneezes. My doctors explained that if my neutrophil count were to drop below .5 then that's when they would really worry. On average, a persons neutrophil count should range from 2 - 6 (I'm pretty sure we're talking about the thousands here, not just a couple floating around!) The lowest my count was, was .7 and the highest it got to was 1.87, but never above 2. There was no sense to it, each day it would go up and down like a yoyo.

What was going on now!?

Physically, however, I was getting stronger each day, and it is incredible looking back at how fast I began to progress. As I began to move more, as I slept better, as began to have less and less pain, I began to feel hope.

By week six, on Monday, I did my first walk with a tall rollator. Five incredible steps, wobbly and unsure, but steps nonetheless. I couldn't believe it. By Tuesday, I did my first sit to stand without using my arms to push myself up. By the end of the week I walked with my frame from the gym to my room.

I remember this as being one of the toughest yet probably one of the most rewarding moments of my life. That Friday I told my parents to wait in my room at 4pm instead of coming to find me in the gym and wheel me back to my room. My physio's followed me with my wheelchair and they also put a walk belt on me to hold my trunk up ever so slightly. My eyes firmly on the floor, I took each step slowly but surely, sweating with my mask on. As I went down the corridor I dared not look into anyone's eyes, but in my peripheral vision I could see my nurses with ear splitting grins, patients smiling with encouragement and my physio's encouraging me every single step.

I walked into the room to my Dad with his phone filming every moment. I sat down in my chair and we cried and clapped and I felt so, so happy. Drained, exhausted, sweaty, shocked, but proud. I'd did it!

By the beginning of week seven I was holding onto the parallel bars and learning to side step. I could get onto bed without a slide board or push up blocks, but just one giant leap. I was lifting 1kg weights and doing fifty arm to shoulder flexes. I could lift my leg off the bed! I could pull up my own knickers!!!

But I was still neutropenic. I mentioned in a previous blog that I had one more nasty procedure to deal with. It was time to take some bone marrow...

Norwegian Nurses and Neutropenia

Turns out, I wasn't the only one getting fed up of nearly fainting all the time; my physiotherapists found it frustrating too, as it was very hard to get me to do...well, anything. It was time for blood pressure medication, Hydrochlorothiazide, to be taken at 6am and 12pm for optimum results. I also had to wear a velcro band, kinda like a corset but not in any way sexy, around my middle.

Drugs work. For the first time, I could finally sit up without feeling dizzy, and this really helped with...getting better. I began to get some small movements back in my arms and legs by week three, and by the end of the week I could use a slide board to get from bed to wheelchair with a two person assist. I would have to lean forward and put my head on my physio's shoulder, and another physio would help lift from behind and we would slowly shuffle/slide me to wherever I needed to be.

I had trouble trusting the nurses to slide board me, and as I had been moved out of my own room to a ward full of people, I always felt like there was the pressure of being watched (although its not as bad as people watching you swing helplessly on a hoist). The nurses expected me to be able to do more than I could and I felt like I was just going to go crashing to the floor!

Lucky for me, I had three beautiful nurses who were always there to look out for me. If you are unlucky enough to end up in hospital, trust me when I say, if you have these three looking after you, you will get better in no time! Three student nurses from Norway were on their placement in my Rehab ward, and they arrived the same day as me. Pia helped me with my first slide boards and was incredibly patient, strong and also not afraid to tell off any of the other nurses for sliding me wrong! I had Pia almost every morning to help set me up for the day, and she always made me smile (especially when she would try her English accent out on me...'Wud ya like a cuppa tea!?' Brilliant.

I also had Sandra and Rikke, friends and housemates with Pia, who would braid my hair for me and chat about travelling and music and normal things. There are only so many games of Scrabble I could play with my parents, and we were all going a bit stir crazy! So having these three nurses, around my age, to talk to me and treat me as a person, not a patient, meant a lot to me. And they were all fantastic nurses, talking and smiling and caring for everyone. Thank you ladies!

By the middle of week five I could slide board with just one person assisting. And something else amazing was happening. I was learning to stand. A physio to the front and two either side of me was how we did it at the beginning. Two would push me up and hold my legs whilst I put my hands on the physio in fronts shoulder. Learning to stand again is HARD.

'That's it Tarsha, brilliant! Legs bent, tummy tucked, shoulders forward, head up, squeeze your bottom, lean to the left...too much, back to the middle...come on Tarsha, keep holding!' 'I'm standing!' I yelled! Everyone in the gym turned and smiled at me, and calls of congratulations were echoed throughout the gym. Triumphant and exhausted, I sat back down after around a ten second stand. Five weeks of not walking, not moving, learning to do everything again...and I had stood.

Being naturally very flexible, it was so confusing to learn how to stand. My legs would snap back like solid bananas and I couldn't grasp the concept of 'soft knees'. My back would arch back and I would thrust my chest forward trying to find my balance. My poor front physio would generally get a knock in the head as I fell forward, and it was incredibly difficult to try and find my balance.

But I was finally getting somewhere. All those exercises I had been doing for two weeks were beginning to pay off, and I trusted the physio's 100% when they helped me to stand. Despite the pain I was ecstatic, I couldn't wait to tell my parents I had stood for the first time! By the end of that week it was only one person helping me stand as I would push myself up on the parallel bars. It was great to have some use of my arms again.

But then they did a blood test. And my doctor came up to me one morning on this fantastic week five and said 'We need to move you back into your own room. Your white blood cell count is extremely low, meaning you're neutropenic. We don't know why...'

Crap.

Vomcano

"On no, please can I have a sick bag?"
"Yup, just hold on...one second...hang on...here we go"
"Thanks...bluuuuuuuurgh bluuuuurgh bluuuuuuuurgh bluuuuuurgh...blurghblurgh...blurgh. Right, anyway, where were we?"

I was getting pretty good at the old tactile voms. And also used to talking about poo and being naked in front of people (gosh I do make hospital sound like bags of fun). I was having my shower assessment done by my Occupational Therapist, lets call her K. She chatted away merrily as I attempted to scrub my body with my T-Rex arms, sitting in the shower chair and occasionally throwing up. Squeezing bottles was ridiculously hard at that early stage, but I surprised myself at how much I could do. I could even hold on to the shower head and spray down towards my numb little toes, un-moving and pale below me.

The aim of Occupational Therapy (OT) is to get people back into being independent, doing normal things even if it was eating with built up cutlery or making themselves a cup of tea. During my shower assessment K explained to me that it was easy to get the nurses to just wash me, because I was so exhausted and everything took so long, but every day I had to try. There were few victories those first few weeks, but as time progressed the small things started coming back. Oh, it was a proud, proud day when I could open the cap on my toothpaste.

In physiotherapy I was doing some basic exercises in the gym, with assistance. A simple task like pulling my knee into a bending position required a physio to support my ankle with one hand, and slowly ease up my knee with the other hand whilst I tried as hard as I could. It's bizarre really; I would look at my legs and try so so so hard to bend and move them, but it just wasn't happening. However, with the physio support I could feel my muscles screaming and trying their best to do their job. By doing sets of ten for each exercise, and building up by ten each day, I would eventually gain control back. And I say eventually.

My notes for week three go like this: -

'Sets of ten in gym with help. Pain. No movement. Shower assessment. Fucking hoist.'

I think the starkness of these notes are self explanatory. I tried to take strength from the other people in the gym (I won't name names), but there were people who had had amputations, strokes, brain hemorrhages, car accidents, diving accidents and other strange neurological diseases. It sounds terrible to say, but at least I knew I was going to get better. People, going through much worse than I, who had been there longer than me, would still stop and smile and say hello.

I think it comes down to one thing, one human trait that we all have. People have said to me I have been brave, that they couldn't have gone through what I've been through. Truth be told, I cried every day. For weeks. I still cry now for goodness sake! But you know what? In the words of Regina Spektor, "People are just people like you".

And you just get on with it.

Rehab

They tried to make me go to rehab...and I said yes, yes, YES. Despite being unable to move, I was swiftly transferred down to the Rehab ward after only nine days of diagnosis and treatment. I was sure I'd get to the gym, miraculously stand up, start pumping my guns and soon be as fit as a horse. Either that, or they would take me out the back and do what they do with horses whose legs no longer work...gulp.

I had become on friendly terms with my nurses in Medical Ward Two, and they affectionately called me T-Rex. One of the nurses who used to dress me would ask me to lift my arms in the air to pop my T-Shirt on...oh how we would laugh. 'Sorry T-Rex, I keep forgetting you can't do that!'. Because I had quickly become so familiar with these nurses I felt like I was leaving friends and going to a big school with scary new people. It was fine. Mostly.

I was wheeled down to my very own private room, complete with a shower room and a window over looking Subway. Lovely. Actually, it was all rather exciting. My Mum decorated my room with photos of my friends and we were all quite positive. The thing with GBS is, only you can get yourself better; yes I had the five day transfusion, but it's only with physiotherapy and perseverance that I would recover.

Whilst I had the right attitude and was willing to work hard, I had a slight draw-back. Pain. When I went down to Rehab, I started to get excruciating headaches. Fortunately, I had never suffered from a migraine before, but now I have complete empathy for people who get them. I was told that the Lumber Punctures could have caused these headaches, but as I was to suffer through them for weeks to come, that began to seem like a less likely option.

Along with utter exhaustion, nerve pain and crippling headaches, I found those first few weeks a nightmare. I was sleeping a few hours a night, relying on medication to knock me out, but waking every half hour or so to buzz for the nurses to roll me over. Not being able to roll over in bed or pull my legs in when they fell out of the side rails was simply awful. I began to dread the nights, knowing they would drag on and on. I would beg for pain relief all the time and by the time morning rolled around I was spent.

And I had an early start. From that first day, I had a timetable made up which meant I had a full day, from 8.30-12.30pm I would be in the gym, then from 2-4pm I would be in, that's right, the gym. I also had Occupational Therapy (OT) for an hour a day as well. Let me tell you now, it would be almost 7 weeks before I was on time for 8.30am!

Being that I could do nothing, I would have to wait until some nurses were free to hoist me into the shower. By the time I was showered, dressed and ready to go, it would be around 10.30-11.00am and I would be wheeled to the gym. I was to become to close to one nurse in particular, and overtime we had our own little morning routine, but more about her later on.

When I talk about the gym, I obviously don't mean your regular fitness centre. This gym involved parallel bars, tracks along the floor, arm bikes and tilt tables. Apart from all the equipment, you have the physio's. I cannot praise them enough, each and every person in that gym was fantastic. I was lucky enough to have the head of the department in charge of me, and I knew straight away there would be no messing around. Firm but fair, I would be pushed and encouraged from day one.

I had Thursday and Friday that first week and I tried so frekking hard. We would practise my sitting balance and I would be swung over the edge of the bed where I would reach out to the hands in front of me and try desperately not to fall face first over the bed. I would also spend time on the tilt table. This is where many problems began.

I am tall. Not crazy tall, maybe just above average around 5ft 9". But my height meant that my blood pressure would plummet very quickly, leaving me dizzy and sick. A tilt table does what it says on the tin; I would be strapped in, then slowly we would tilt me up. The aim was to get to a standing position to get my body used to being upright and also put some pressure onto my feet. Could I make even 50 degrees? Nope. My face would apparently drain of colour and before fainting I would be lowered back down. This was only the beginning of the blood pressure drama, and it soon became apparent that this was yet another problem.

I felt lousy. I could do nothing in the gym but faint, and OT? There was a peg test, nine innocent holes in a board and nine thin, smooth plastic tubes. The aim? Put the pegs in the holes. Sounds easy right? I couldn't get one in. I would pick one up, drop it, try and pick it up again and do the same. I came down feeling positive, but I soon felt like shit. I knew it was just the beginning of recovery but I was angry and tired and fed up of constant pain. It is so unbelievably hard to be positive when you are in agony.

My drugs were increased. I was weaned off the Morphine and began taking Endone, a strong opioid that would help my headaches but leave me drowsy and nauseous. I was also taking my normal bowel medication and having Clexane injections in the stomach each day to thin my blood to help prevent Deep Vein Thrombosis (I also had to wear TED socks for this...more on them later). I was taking Paracetamol, Ibuprofen and OxyContin. I later found out OxyContin is a highly sort after drug in Canada and is extremely addictive...you know it's good if the Canadians are after it! I was on Gabapentin for my nerve pain relief, not that it helped much.

I quickly became depressed and fed up. I felt like I was never going to get better. If I hadn't had my parents with me I think I would've easily slid into some serious depression. I couldn't imagine moving my legs or using my hands again.

But I was sure as hell going to try bloody hard.