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Learning Curve

It’s late, and the wards as quiet as it gets – an occasional buzzer, the odd cough, nurses footsteps. I’m still awake even though I’m tired; but then I’m always tired lately. Once again I’ve been meaning to write about a number of things, but days seem to melt away. Lately I have been pretty busy and so actually, days don’t just melt into distinct puddles of existence but bleed into one another – if it wasn’t for these endless benefit forms I’d rarely know what month we’re in. I mean how the hell is it September, (it is September right?!) My life just seems like an endless cycle of tea rounds and tablets at times; and I go out more than other patients, some who have been here far longer. Anyway, the point was I’ve been busy – which is basically a warning shot that this could be another long slog of an entry.

This past month I’ve had a few more overnight stays back at my folks place, and both were enjoyable and happy occasions. Reading that last sentence back it seems like I’m heading for a ‘but’… and I am; still, please understand that I enjoyed every moment. It was great to celebrate my brother’s birthday with my family, and it was amazing to feel the love and support at the fundraiser he’d helped organise – but yet again it was also an eye opener to difficulties I wasn’t completely prepared for. More and more lately I’m realising 6months in a rehab hospital isn’t the hardest part. I thought I was growing into such a big brave girl and then someone whips off the training wheels. Each new situation seems to bring with it 1 or 2, (maybe even 4!), new challenges.

I’ve told you how manoeuvring a wheelchair is tougher than I thought, but that was on just a few uneven pavements. My new encounters included gravel, carpet, astro-turf, narrow ‘village pub’ corridors… On a number of occasions someone would have to ‘wheelie’ me after getting marooned; a rescue manoeuvre that is not the most dignified. In fact, I’m pretty sure I looked more like a rag doll in a wheelbarrow, than the ‘fiercely independent woman’ vibe I aim for. Aside from issues of terra firma, as we leave what summer we had behind, (it’s actually been pretty decent here in Costa Del Rehab; I can offer leg-arm comparisons as proof), rain is an emerging adversary. The problem here is that push rims on a wheelchair are usually smooth, which I’m sure you can imagine leads to questionable grip when wet. You’ll get better purchase on the tires, but then be prepared to get anything that your wheels have encountered on the pads of your thumbs – animal excrement being the worst… so far. Household doors are another unexpected enemy; not typically wide enough for wheelchairs anyway, but add in some skirting board and well I either take a chunk out each time I go in the kitchen or I don’t go in the kitchen. Meanwhile Olde-worlde pubs that you’ve grown up in, they do have wide doors… but these trick you down into small corridors – ‘Stand clear! Vehicle reversing!’ I could go on. Reading this back, I wanted to cut my list of grievances down to prevent the re-appearance of a ‘Moaning Myrtle’ persona – but I have one more to mention: Ramps. They often look a fairly acceptable gradient, but can prove tougher than you anticipate. Such is the case for the ones my Great Uncle built into my parents garden. When he did this he was aiming to make things accessible for me, so I felt awful when he was sat in the garden watching me struggle to use them. I felt sad that I couldn’t show him what a great, kind thing he’s done by helping champion your independence. As I said, new challenges: the rehab actually starts when you’re discharged and have to live a daily life in a world not designed for you.

That brings me nicely onto my fall. Yes ladies and gents, I have popped that cherry and became intimately reacquainted with my old friend, the floor. It was a less than graceful up-end, off the scurge of disability equipment: the shower chair. This one bit of kit has honestly been my Everest for the last few months, and before I tell you how I ended up in a position that would be envied by a World Champion Twister player, I shall first inform you of my nightly battle with this notorious fiend. When you mention the words shower chair to Joe Public, the main mental image is of either a flip down seat or a perching stool. These exist, and are great for those who can’t stand long enough to have a shower, but alas this is not the kit I refer to – as of course I cannot stand at all, without a standing frame. Instead the contraption I use looks like a metal wheel chair with a hole in the seat, which opens to the right, (or left for those wired that way), to allow access to ‘the undercarriage’. I don’t deny they are simple and clever equipment for the likes of me, but they are also a bugger. For one, getting on them is an awkward struggle for several reasons; because naked butts and glossy surfaced transfer boards do not go hand in hand (squeak), because having a gapping hole in what you’re attempting to transfer onto makes hand placement awkward and thus lifting more difficult, and finally because the brakes on these things are… bloody shite. Still, as with everything new in the past 6 months, I have eventually adapted and problem solved. For example I now cover my ass in baby powder and sprinkle a load on the transfer board; Johnson’s is gonna’ make a killing. However, the other issue with them is if you aren’t careful they are notoriously easy to tip – and so we arrive at my glorious nosedive.

I had been doing really well on the night in question. With the aid of talc and determination, I had practically flown into the chair and managed to balance my bowel care kit and shower products on my lap while wheeling myself into the bathroom. I had swiftly set up my colonic irrigation system and with it coaxed my bowel to part with a ‘good result’, before a satisfying shower and managing to safely dry myself all the way to my tootsies. I felt like I was getting the hang of this disabled lark and so thought to myself I’d try and complete the routine by getting myself back into bed without help. Here is where it all went tits up - or more acurately tits down, ass up. My transfer board was on the floor next to my metal wardrobe, but I was a big girl now who had just dried her feet without tipping the chair, I could reach it. I stretched down to the side, (the safest way to pick things up from a wheelchair), and my fingertips were just grazing it. I gave it a bit more welly and made contact but couldn’t grip it, so the final time I chanced bending just a little forward and… mistake!

Explaining the exact predicament I found myself in is difficult and relies on your visual imagination, but here goes. The chair tipped forward over me but as my feet had fallen off the foot plates they had splayed to the sides. Coupled with my swiftly forward thrown hands, this meant all my weight was going through my arms, but also my lower shins and very awkwardly angled ankles. My knees floated 4 inches from any solid surface and the shower chair was atop me like a turtles shell. I was an illustration straight from the pages of ‘How not to do yoga’. I’d always liked to think that when I had my first fall I would maintain a calm manner – this is not what happened. Instead I lost all vocabulary apart from the word ‘help!’, but I didn’t really shout because it was night time; people were sleeping after all. My bed neighbour however had been woken by my clatter and, having lost her buzzer, woke another lady to get the word out – a farcical twilight bark of sorts. Soon enough nurses crowded around what I’m sure was not the prettiest sight and got me tits-over-arse once more. Now I’m telling this in a humorous manner, but I’ll admit I was shaken, and shaking a little when I was settled on the bed. I was glad of the nurse on that night, she has a maternal way about her – as well as a dash of ditzy – and in the most British way asked if I wanted a strong cup of sweet tea. I most certainly did.

I settled quite easily, I mean I didn’t think I’d hurt myself, but how was I gonna’ know when I have no feeling in my legs? My ankles had been taking weight in a very precarious position, that, if I’m honest, just looking at made me feel nauseous. It looked so wrong. It looked painful. But I felt nothing. Because of this inability to feel if I’d hurt my legs, the nurse had to keep checking them and unfortunately one of my legs felt hotter and was slightly swollen. Cue ambulance sirens. The only way to tell if I’d broken anything was X-rays and so I spent 8 hours in the local A+E, to find that it was just soft tissue damage. That is the anticlimactic ending to my little stunt.

The whole reason I’d wanted to try and do things on my own was because I am approaching discharge. “Really? But you aren’t walking yet?” I’ve come to realise there are those who either haven’t got the message, or just don’t want to believe the likelihood that I wont walk again. I came to this realisation when I came home for the fundraiser and was asked in no roundabout way “When do they think you’ll be walking again? Or the less tactful “shouldn’t you be out of that thing (my wheelchair) by now?” I get it, because I don’t want to believe it either, and I know these comments have all come from a place of hope. I actually prefer comments like that over people awkwardly asking ‘how you doing?’ with a sad look in their eyes. Don’t get me wrong, I know every single one means well; I know people don’t know what to say, there are even those that just give me a weak smile and avoid exchanging words because, what can you say? But I’d much prefer people were just candid. It makes you feel like less of an abnormality when people aren’t trying to say the ‘right’ thing. I’m the same person; treat me as you always did.

Anyway, despite regaining some movement in my thighs, it still remains unlikely that this will develop to walking or even standing without aids. Discharging me doesn’t mean that they’ve given up on me, but they’ve seen what progress they clinically expected. I’ll still get physio as an outpatient and more importantly, the generous contributions to the fund will allow me to get kit to continue improving myself at home. If I’m honest I feel ready as well – that or I’m just fed up of being in here – because as easy as it would be to stay in an environment where I have several comfort blankets - nurses, call bells, cleaners etc - I have a life out there that I want to get back to living. It’s time for me to put things into practice and adapt. I’m scared, I don’t think I’d be right in the head if I wasn’t, especially after a recent tumble. There are gonna’ be times when I’m on my own in the house – what if I fall and can’t reach my phone? What if I can’t get back in my chair from the sofa and piss myself? (Note to self; consider the potential for accidents when choosing the sofa; dark colours and ‘wipe-clean’ material would be a good idea). What if? What if? What if? But I desperately want to be the fierce independent soul that I was, and to do that I have to try and keep trying. Here goes.

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