Trapped

It’s been a month since my last update but it feels like longer. Maybe that’s because a lot has happened, maybe it’s cause I’ve sat down so many times to write and then ‘thought better of it’. I’ve been wondering lately if I still want to put what I’m going through out there in the public domain. Partly that’s because I so desperately want to be seen as the same independent, fierce woman, and I am scared that the blogs lately don’t align with that ‘image’; instead exposing, in a harsh cold light, all my fears; being a burden, being weak, (or at least not as strong as people seem to think), an invalid who needs help cleaning herself up when she loses control of her bowels. The other reason I’ve just demonstrated: I feel like I’m coming across as a whiny, bitter girl – and trust me there is a lot of moaning I could do about the past 2 months – but how long can I complain about the challenges that I’m facing, and still avoid sounding bitter, drumming up pity, (which is the absolute LAST thing I want), or even worse become boring and repetitive.

Sometimes in my head I hear myself, ‘You lost your legs but at some point you have to get over that and get on’, and I am trying but how long can you complain without sounding like a self indulgent prick?! I guess the difference is in what I intend to do with my writing, and why I started this blog in the first place. I began by being brutally honest, and I want to continue, but what am I really trying to achieve with these blogs. At the start they were therapy really, a way to formally talk myself through all the stuff floating in my head – self doubt, insecurities, body image, fear of not being able to do all I wanted, anger at a split second ruining my perfect little life plan – and after I do it my head feels a little less full; but if it’s just therapy why publish it to social media? I’m starting to plan a book about all this as well, and I find myself asking the same questions; what do I really want it to say. In the end it all comes back to this; Truth. I’m doing this because I want to talk about all those things people are scared to address when they look at or talk to someone like me. I’m doing it to raise awareness of what struggles people like me face on a daily basis, in the hopes that maybe we can get something to change. I’m doing this to talk about things that are important to me, like mental health awareness and modern medicine that focuses on treating a person, not a condition... BUT my biggest hope was that this would help other people; not just those with SCI, but anyone going through difficulties, as well as their relatives and loved ones. I wanted to help other people who are in similar situations to know they aren’t alone in how they are feeling, and I wanted those who know/support/care for them to understand certain challenges, and the feelings that come with them, just a little better. So really my worries about my personal image, or sounding like a bitter, moany cowbag, shrink away in comparison to what I set out to achieve. I’ve rabbited on a bit there but I needed to get that off my chest… and so now we plunge into the depths of a disgruntled patient, and you may see why I was worrying; but try and stick with me.

The days at the moment seem to drag on, with everything taking twice as long to do, meaning I feel I haven’t achieved enough. It leaves me with an unsatisfied feeling of empty purpose: something that I’m not used to. It makes me feel like I’m not improving fast enough. Trying to get that balance right – between hard work and relaxation – has never been my forte. I’ve always felt guilty for ‘slacking’; when I’d take downtime from studies I’d have a argument with myself about whether I was just making excuses, surely I had another hour of revision I could do before I watched the next episode? And now I have the best ‘excuse’ to not push myself ‘too hard’. My life turned upside down this year, my body’s become a stranger, and my future took a few hits with the set back club, so I can’t expect to launch myself back into life at the pace I was going. I need time to regroup and to learn my ‘new normal’. It’s just so alien, and not just this body I’ve woken in. Since GCSEs my life has been a conveyor belt from exam to exam, plus the personal ‘behind the scenes’ trials; I’ve taken breaks of course I have, but I’ve never had such a long period of time on my hands without incentive or instruction. So I’m playing a game with a fictional giant buckaroo set, where I’m trying to push myself just enough without sending imaginary plastic saddles and lasso rope flying in all directions. The main objective at the moment is to get stronger.

When I was in rehab I was pushing myself around the site all day, having an hour of daily physio, and taking the more than occasional trip down the village; which involved that, not insignificant push back up the hill. It’s no wonder I’ve lost some of that strength, for a number of reasons. Firstly, I obviously haven’t been able to access the physio as often, and secondly I’m not getting out as much. The physio’s themselves are lovely, and keen to think of ways to help me manage better, but they just seem to have such a high caseload; it was nearly 3 weeks before they could do my initial assessment and in that time I succumbed to bad habits, (mostly out of fear of falling), that, whilst they seem easier actually increase my risk of friction damage and pressure sores – Yuk! No thankyou, I’ve had enough bed rest to last a life-time. I was genuinely devastated when they watched me transfer and told me my technique had ‘gone’. They broke it down until I realised how much I had lost. So essentially I now feel that I am almost back at square 2, maybe 3, (lets be fair square 1 would be some decline!), but without the benefits of daily, monitored physio, or a specialist environment to get it back.

Being home is definitely earning it’s reputation as the hard bit, but I’m promising you all, (but more importantly myself), that I will take control myself and improve. In some respects, I expected to be left to figure things out for myself, but there are some things I can’t affect. I’m around 2 months, (I think it may be more), ‘on the outside’, and I haven’t been able to have one session in a standing frame, and one of the departments I’m involved with hasn’t even met me yet. I still don’t have certain equipment, and nor can people seem to give me timescales. For such a drastic life change that part of my aftercare feels inadequate. I don’t place blame anywhere; certainly not on the overstretched and underfunded NHS, I am just disappointed. my loved ones urge me to be a thorn in someone’s side, but I know what it’s like to meet a patients frustration about accessing care, and not be able to do anything; it isn’t their fault individually – well most of the time. What I must say here is a MASSIVE thankyou to those of you who have donated/fundraised via the fund, and the charitable organisations that have sponsored me. With your help I have been able to purchase additional equipment to assist with my recovery. Thankyou.

Now the not getting out thing... that’s a bit of a convoluted story. Firstly the week they moved a disabled person into an adapted property, the council started gas works, with holes in the pavement both sides outside my house; it’s a fight to get my wheelchair past, especially when wet – it’s winter in Merthyr so the chances of that are 92% at least. Secondly, I’d only just got home and anxieties where high, not just my own, but my loved ones who weren’t sure I should be taking it upon myself to use my free disability bus pass just yet. I’m already gonna’ go on a tangent here and say, sometimes, the hardest part of the injury is other people’s reactions. You’ve been through such trauma people that love you just want to make things easier for you, feel like they are helping, and ultimately keep you safe. It’s natural of course, but anyone who knows me will testify to how independent I consider myself. Sure I can see that I’m more likely to need a hand now, and of course I’m worried about all the new challenges that are coming my way, but I’m still the same person and I want to be independent anyway that I still can. I appreciate the willingness of people to help, but let me try first, and then if I cant – proud and stubborn as I am – I will ask for help. I have never believed in wrapping yourself in cotton wool, that hasn’t changed, so please don’t treat me like I’m fragile. I will admit with those closest to me, it’s sometimes all too easy to give in and let people help me with things, like getting dressed for example. Part of this is because I know they want to feel helpful, but in truth it’s more because I know whatever task it is will take me a lot longer without help. It would be so easy sometimes to progress from this to becoming lazy and dependent, especially when everything feels like it’s going wrong and actually you don’t want to keep fighting. Those days you accept help, because without it you wouldn’t bother. Luckily that doesn’t happen often and if it dose, it doesn’t take long for me to chastise myself.

Admittedly in Rookwood I only got a bus on my own once, (and I didn’t tell anyone I was gonna’ do that), but the rest of the time I was with someone – even if it was just some other rebel patients – and so it was agreed that I would build up to leaving the house alone. It’s remarkable how someone worrying about your ability to do something, and mentioning that concern, dents your own belief, and so for the first few weeks I only left the house with loved ones for small tasks or pub sustenance. During this time I sated myself with sorting through the multitude of paperwork that appeared, like a build up of fungus on my desk; benefits, council tax, medical supplies etc etc. Then I got my National Exercise Recruitment appointment. If you haven’t heard of this, its an excellent scheme that allows you discounted exercise classes on the recommendation of your doctor or physio. I left completely enthused. I had actually gone with relatively low expectations of what a local leisure centre could offer someone like me, but the lady that works on the scheme put all my fears aside, that they would work with me to adapt every class, and that I wasn’t the only one they had in a wheelchair. I could even swim and join aquafit again because they had a hoist. I went home and excitedly changed the timetable I’d made for myself to include these classes as of the following Monday, and started looking at bus routes.

Before Monday came though I was busy learning a lesson in just how little feeling I have in my feet. To give context – so I don’t sound like a complete moron – I get very cold since the accident, while My fiancé is like a walking radiator, so I took the side of the bed nearest the radiator… and I think you can guess where this is going. In my defence I did check before I slept that my foot wasn’t right on the radiator, but never-the-less when I woke up that is exactly where it had managed to get. Enter the biggest blister I have ever seen. Honestly if I hadn’t woke up when I did, the smell of cooked bacon would have been in the air; my bacon. A trip to A+E later and I have a dressing on my big toe and district nurse calls being scheduled; and thus, (on the days they were set to call), I was housebound so I didn’t miss them coming to dress and review my stupid foot. I was disappointed at the interruption to my master-plan, but I was determined to resume when able.

Unfortunately this mishap seemed to have invited all it’s mishap friends, and they’d sat around plotting my downfall. To avoid excessive, ‘oh woe is me’, I’ll give you a brief lowdown. After ‘roast a la Georgie’, I developed an infection in the back of my legs. It looked like a bruise at first – and to be fair, I haven’t quite got the hang of elegance when handling my limbs, so I wasn’t that alarmed – but by bedtime that same day it had evolved into a bright red patch the size of a tea saucer, with yellow blistering at the centre. It was like a disgusting flower blooming on my calf. ‘Hi A+E, did you miss me?’ More antibiotics and a good dressing and we’ll just write off that leg, (it was the same side as my BBQ’d toe), as a lesson in paraplegic skin care. I’ll be more vigilant, dry my legs better, make sure they don’t rub on anything… Brush it off, keep going. The next morning my other calf was swollen, rock hard, and red as a certain reindeers nose, (so by now I’m getting extremely disheartened that my body seems to be falling apart), but it didn’t quite look like the infection. For the love of fuck! Was this my worst fear? It was a text book presentation of a clot in the leg.

Being a doctor venous thromboembolism, (a clot in a vein), is bread and butter, we remain calm, and we treat it. When you potentially have it yourself, you try to appear calm, but in your head you run through every fear inducing scenario. In particular I was petrified that it was a clot, and that, at any second, it would dislodge and travel to my lungs. The first death I witnessed was a clot in the lung, and going out that way is a personal fear. Back to the hospital again, for a scan and it’s NOT a clot, (celebration dance), it’s more cellulitis – boo! *blows raspberry* – and the antibiotics I’m on are fired for not working hard enough, and a younger model takes the job on instead. Long story short, my legs are slowly getting better, but I’m now on week 3 of antibiotics which isn’t particularly fun – especially the side effects. And so we once again plunge into the world of bowels.

So antibiotics aren’t that bad usually; a bit of a dodgey tummy isn’t that bad to manage in exchange for curing a bothersome infection… However when you have no warning urge, can’t run or even wheel, to the porcelain thrown, well you simply fill your pants no matter where you are. Even if I hadn’t felt floored by the nausea and general eurgh from infections, I couldn’t leave the house for fear of shitting myself. In fact, at one point I just couldn’t deal with it anymore and refused to move from bed, (a sure sign I was fed up), where I led on puppy training pads just in case. At times I thought I’d seen the last of it, just to get ‘caught short’ again, usually just when I’d changed to clean pyjamas. I try to remember it isn’t my fault, when ‘shit happens’, but that doesn’t make it feel less degrading, especially when your fiancé is having to help you clean up, before you spread it any further around the sofa – N.B. The cushions and covers have been washed thoroughly for those who might visit. On occasions where he hasn’t been around e.g. he’s works nights, I’ve had to just try my best. I’ve only caved to calling him home when I’ve actually fallen on the floor or other such emergencies – only once this month, go me! It may be a minute consolation but I’ve actually been proud of myself when I have managed.

If you’ve not been in my shoes, (I sincerely hope you haven’t), or had a loved one in such a situation, you may think you could just roll over, grab some baby wipes, (if they were in reach, which they always are these days), and do the old reach around on your side to wipe like normal. If that’s the case I invite you to try it, because it is not that simple. To move around the bed I have to sit up, and that requires rolling back into the shit, so not an option. Moving over/rolling is f**king hard without legs to dig in with, and hips that don’t follow as you roll. Still I needed to try. I hoped I could lift my bum enough, but alas I could not, and me and the poop moved together. I try to move my legs apart to assess the damage, and it gets on my hands because its all up my legs. After an understandable minute or two of sitting in shit city with my head hung low, (not in my hands, for obvious reasons), and feeling like a toddler I eventually made a plan. I sacrificed a pillow to the god of incontinence, as damage limitation, and managed to get to the bed edge, where I make a second sacrifice of a jumper to get on my chair without making that dirty too - finally I can start to make a dent in operation clean up. I get the lift downstairs to grab the puppy pads and baby wipes on the stairs and return, to find Vincent sniffing the poop and trying to bury it for me! I managed to strip the bed and then I kind of made the bed. I say kind of because our bed is flush to the wall because its on raisers and its safer that way, but obviously I can’t get to the far corners, and have to try and make the furthest half while I’m led on it – I love a challenge. Eventually I’m on a half and a corner of made bed, with all the puppy pads and baby wipes until I’m as clean as I can be and fucking shattered. It had taken two hours, but the important thing was I did it; true there’s a sheet in the bin and I’ve gone through a decent stock of baby wipes, but I did it without help. That’s a win.

I did warn you, but to summarise there was a whole plethora of reasons that I ended up stuck indoors. For about two weeks the farthest I got, where I’d actually get out the car for any period of time, was the ASDA run or to see a Doctor; and even there I was scarcely getting any stimulating human interaction – no offence intended. It wasn’t like I was bored at home. I had things to occupy my mind; a thousand books to read, Netflix, my portfolio and CV to update, and the fiancé even tried, (with limited success), to get me into console games, but too much time alone meant too much time to think, and I ended up getting my thoughts stuck; usually on the negatives. I needed something to break the monotony, and a friend that I don’t see often turned up at just the right time. I’d forgotten we’d planned her visit but that made it better somehow. I took the opportunity to try getting the bus home. I learnt that brakes work better when you don’t let your tires go flat, which is especially important when you live in a valley with a hill round every corner, (that old ladies face as I slid gradually towards her was, in hindsight pretty damn funny) – so I’ve bought a bike pump.

So there’s a whole lot of negative in the prose above, but, (while I hope I haven’t bored you), I would like to think most of it is justified, but as I said right at the very beginning of all of this, the notion I’m trying to cling on to is that moaning and feeling sorry for myself isn’t going to make me stronger, or solve the problems I face. Now is when I have to remind myself of that and keep going. Moaning is fine, especially when things are genuinely shit, (no pun intended), but it serves absolutely no purpose if you just continue to moan, rather than try and solve the things you can fix. There’s been so many setbacks recently, that I would defy anyone who’d claim they wouldn’t be disheartened and fed up: but all I can do is keep going and learn what I can from each hiccough. I’m using the buses more, and I take myself for coffee and do some writing or similar. I ask people for help when I need it, and I problem solve. I’m hoping to build up to changing buses, and getting to those exercise classes next week, and when my legs are healed I will be in that pool – I may not even need the hoist, I’ll just launch myself in.

Things are difficult, but they are new and I’ll get there.