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.