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.
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