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  • montanafillingham

Home Sweet Home

I’ve been home nearly a month and it’s gone incredibly quick. I guess I’m starting to get used to it, but it’s a slow process, and in all honestly I’m struggling. I guess after nearly 7 months in a hospital setting it’s bound to feel more than a little strange. I touched on how hard I was finding it before, but I still haven’t hit my stride with things – and we all know how impatient I am. I’m constantly swinging from days where I feel I’ve coped well, to days when I sit thinking ‘how the hell would I do this without help?’ `I get angry that I’m not as truly ‘independent’ as I want to be. No worse than that; I don’t even feel as independent as I was in the hospital. My family are trying so hard to keep my spirits up, and remind me that the small victories are enough sometimes, that they are stepping stones as I head towards bigger and bigger milestones, (all of which, they have resounding faith that I’ll conquer), until I’m at the summit, and as independent as I can possibly be.

Some days their reassurances do help, but other days I want to scream at them; and on occasion I do. It’s not really them I’m angry at, and I’ve gone through that in blogs before, but my anger bubbles nearer to the surface than I’d like at the moment. The frustration is incredible. I actually punched my leg in a rage a few days ago; I’d been trying to do my bowel care and just couldn’t get the probe in, (I always thought anal probing would involve more aliens); I just wanted to get it done and get to bed. I just wanted things to quit being so damn hard.

I wasn’t naïve enough to think a new environment would be just as easy as one tailor made for patients with spinal cord injury, but I didn’t expect to struggle this much. I sit and try to breathe and focus on how far I’ve come since March. Sometimes that helps, because I can remember feeling similar then; weak and not able to make consistent progress, angry at how much effort and time I had to put into mundane tasks, and wishing I could just fast-forward or even better rewind… then things got easier. So it will get easier this time too. I know that. I’m not weak, I’d go so far as to say I’m incredibly strong, (not to blow my own trumpet), but you don’t feel it when you’re back to fighting to get in and out of bed – and don’t even mention the f**king shower chair – after it had just got semi-easy; it feels cruel almost. Don’t get me wrong, it was time for me to leave rehab because I could do everything I needed there. I love that I’m home; I love having my own space, my own time and the creature comforts of home cooked food and a private bathroom - plus I have a certain little fur ball back, but more on that later. Still, despite all that, I guess I was never going to feel 100% ready or comfortable; I just wasn’t expecting… well to feel so vulnerable.

I’ve had 2 falls already – both off the villainous shower chair – and plenty of near misses. Luckily both of these happened when my fiancé was either home, or due to be home, and neither have needed A+E attention. Of course, this has lead to discussions about a fall alarm. ‘What is a fall alarm?’ I hear you cry, well it pretty much does what it says on the tin – if you fall it detects this, makes sure you’re okay and if you need assistance it will contact either a person of your choice or an ambulance. It’s a great little invention for the elderly who live alone and are at risk of falling. I’ve seen for myself that those ‘frequent fallers’ who refuse to have one suffer for it; coming into A+E hypothermic, with bad pressure sores after lying on the floor in the same position, possibly in puddles of their own making, for hours before they can get someones attention. The fall I had when the fiancé was out of the house wasn’t bad and I didn’t panic because he had only popped to ASDA, but if he’d gone off to work, I wouldn’t of been able to get off that wooden floor. I couldn’t have rung for help because my phone was on the bed. I would have been on that floor the whole night. Without catheters I would have peed myself, Icould easily have developed pressure sores, (back to bed rest? I don’t think so!), and even if I’d got hold of Carl or my brother they’d be at least 45 minutes from rescuing me; an ambulance would have to break in. So it sounds like a no brainer to have such a system. It’s sensible; I get it. Still, I’ve been resistant to the idea.

I can’t truly tell you why. I guess it’s my pride getting in the way, and I know that’s stupid, but I’ve always associated fall alarms with frailty; little old dears wearing corded pendants with red buttons - oh how very fashionable – and I know a dent in my ‘image’ pales in comparison to safety, but I guess I didn’t want to associate myself with that group of ‘at risk adults’, or admit to that vulnerability. Some people already see the chair and see someone who needs help, I don’t want to wear something that literally screams ‘help’ if I should need it. My self-esteem has taken a knock already with my puffy blue feet, difficulty shaving anything more than my armpits, and of course the potential for incontinence. It just felt like another hit. However, I have now agreed. I found a system that is fairly discreet, and I only really need to wear it when I’m alone. I still refuse to place myself in the ‘risk of falls’ category, (a term I’m used to hearing on elderly care ward handovers), but I’m slowly accepting the limitations of my disability, and more importantly I am aware that having a fall system will put my loved ones more at ease – that is more important to me than my stubborn pride.

Being home I’m also missing having other people around that truly understand. I knew this long before I left rehab, but honestly the best therapy is having friends that have gone through it all with you, and are feeling the same because of their own injury. Realising, and having it reinforced on the bad days, that how you’re feeling is normal, and being able to talk to someone with the same feelings swimming round in their brain; well it makes you feel less alone in the darkness. We keep in touch as much as possible, but we are all fighting our own battles and speaking to them I know we are all feeling similar. Still, it’s hardly the same as being just down the corridor ,when you need someone who sees the funny side of you shitting yourself. We kept each others spirits up, we pushed each other, while knowing first hand how hard it was – when someone able bodied tries to push you, you can’t help but feel they don’t know what they are asking of you, even when you know they just want the best for you. My rehab friends helped me not to feel sorry for myself, and spurred me to take control of my recovery. We did that for each other I think; it’s far easier to motivate someone else, than to motivate yourself. Talking to each other also helps us suss out whether we are experiencing the same ‘after care’. I for one had been feeling cut off from any significant help. Rehab were good in saying, ‘just call if you’re having problems’ but the problems I, (and my fellow outpatients), are experiencing is due to waiting lists, and lack of provision which isn’t for them to chase. I suppose I could ring the nurse specialist about my bowels, which have been unpredictable, but I’m pretty sure it’s due to being on antibiotics for a bladder infection. If I keep having problems, I promise I’ll reach out. Anyway, as I say waiting lists are the big bug-bear. I haven’t had any formal physio, and no contact with community OT since my discharge. Mum says I have to keep calling because, whether right or wrong, ‘the one who shouts loudest’ etc, so I started chasing and being met with answer phones. Only one person called me back… to tell me I’m in the queue and it’s gonna be another few weeks before they come to asses me. In the mean time no daily physio has taken its toll, which shows in my transfers and bed mobility. At least I’ve got the gym machine up now and my little brother who is just a star at encouraging me; he’s written me a regime bless him.

Everything is just so ‘new’, like the different surfaces to transfer on and off. Even small things like when I did bowel car in rehab I had a wall to my right that I could lean on to steady myself; here I don’t and so I’m having to experiment with the way I do things, and on a few occasions that’s meant bowel irrigation water on the floor, and more than once ‘solid material’. Who ever thought having a shit would be so troublesome? In hospital I had people who could sort that out (and while I’d still feel bad for them and embarrassed for myself) that job now falls to my fiancé, and while I know he loves me I don’t want him to have to – I don’t want him to feel more like my carer than my lover. Mind you, some days I think how could he not feel that way? There’s affection between us, kisses and cuddles and spooning, but sex is still a big question mark. I think in one of my first ever posts I said that sex is important. It’s unsurprising that when the accident first happens, SCI patient priorities are healing and hoping function comes back. That’s what is first on your mind. What you hope for, what you dream about, (dreams where I walk are devastating – you wake up and it takes a few agonising moments to realise walking was the dream, and this new life isn’t something you can just wake up from), but as time goes on and you start to accept that certain things may never come back; priorities shift and the main problems SCI patients worry about and hope for is continence and you guessed it – sexual function. So some of what I write now is going to be shockingly personal, and I’m sorry if it makes some people that follow my page uncomfortable, but I’m not scared to talk about it.

My level of injury resulted in highly diminished sensation on my clitoris and, (until recently), unknown internal sensation. In rehab it was easy to ignore that particular ‘disability’, because even if sexual encounters were on my to-do-list there wasn’t any privacy to have such intimate moments. I went on happily pretending that when we got home it would be okay – denial ain’t just a river in Egypt, it’s a friggin’ ocean. We gave it a go and at first it was great, sensual and loving, but when it came to the main event I couldn’t feel a thing. Actually that’s false. What I could feel was a body pressed against mine at the hips. I was aware of every hair that brushed the tops of my thighs – it almost tickled – and the weight of his body shifting as he moved but below that it felt like I was nothing. I knew what he was doing, I remember the way it used to feel but there was just nothing. I don’t think it was strange that this freaked me out, but more than that it upset me and we had to stop. I just felt like half a person. We had talks about sex in rehab; how we have to explore and adapt, but that’s easier said than done when you feel like a born again virgin, and have no idea how things will feel. Now I know sex isn’t everything but we’re young, and it feels like a big loss right now. I’ll continue to want to try and find a way, but it takes time to work up the confidence or courage to try, and if I do get there some nights I then think ‘but what if I freak out again and I get his hopes up for nothing?’ – and that’s just one of the what if’s; What if it hurts? What if I spasm? What if (heaven forbid) I shit myself? So yeah ‘everything’ is new.

At the moment I feel like the first few weeks have been spent just trying to get my head round things. Christ, you’d think I’d had enough time for that in the last 7 months, but as I said before my feelings over loosing my legs are like a pendulum. Some days I accept my injury and face everything head on, other days I’m stuck between anger and sadness, trying not to get bitter and hiding myself away. I’m trying to make myself do one important thing a day as a balance between pushing myself and realising I’m only human – a human who has been through a lot this year. Still there seems to be so much to do, yet at the same time there’s a lot of waiting around because one thing relies on the other. I’ve done myself a time-table today though, I feel like its time to make things happen off my own back. It feels like a beginning.

Having Vincent back is a blessing, (he’s always been my therapy cat), and, while he’s still afraid of the lift and my wheelchair, he’s really settled in quite well and is currently asleep next to me. I was so afraid he would have forgotten me but, (Mum will kill me for this), I had him out of the carry case in the car on our way back to Wales from my hometown, (thankyou again to Jim, Sarah & the boys for taking such great care with him), and he sat on my shoulders the whole way. We are now back to the stage of frequent headbuts, and sleeping behind my knees in bed. I’ve also started accepting visitors – although I hate not being able to host anything properly, and if you want to come say hi for a cuppa you are all more than welcome. It is slowly starting to feel like home, (although they are already talking about moving us – don’t ask), and people thus far have been pleasant enough. Getting a lot of help from one guy at the council, he’s brilliant, always checking in to see that things are moving along. The house is also on the bus route to the hospital, so I’m thinking of going back to teach voluntarily before I return to work. I’m also still helping with University Open Days, and looking to put my fingers in other pies at some point. I’m not that well at the moment with the bladder infection and dodgy tum, but it will get better. I’ve got this far.

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