1. Carving out space just for me
“I didn’t feel like I was in control of my bedroom because I was constantly being invaded — yes I think invaded is the right word. Sometimes it was nurses checking on me, other people’s visitors, or the cleaner cleaning the room (every time I tried to have a nap!) or nurses banging things in the sluice room on the other side of the wall. My space was also invaded by bad smells and noise which were horrible when I couldn’t communicate.”
“I never felt I could properly relax, there were always nurses checking on me through the window in my door, and I had no idea if I was being watched or if I wasn’t.”
“The person in the bed next to me was always up late, but would also leave their TV on all night, watching horrendous shows.”
“My friends and family brought in plants, photos, paintings, a table cloth, and my doona which made me feel more at home. I felt more in control of my bedroom once it had been personalised”
“While in rehab, we would look out for each other. If someone in the room needed a nurse, others could use their call bells for them.”
Muhammad: I know that I’m supposed to be reviewing my progress with my whole care team this afternoon, but I’m too exhausted to take anything in right now. I use my [tech] to take a quick look and see if it can reschedule it for me, and it finds a time tomorrow morning that we can do the review instead. I quickly send the request and head for my bedroom [4].
When I arrive back at my bedroom and I just need some time alone to have a nap, I know I can use my [device] to lock the door, and to let passers-by know that I don’t want to be disturbed. The nurses can still come in if there is an emergency, but I feel I can actually relax and rest without being on edge thinking the door could burst open at any moment [2, 6, 7, 13].
While I’m in my room, I love that my [tech] can make things exactly how I want them. If I need a nap, the blinds close, the lights turn right down – but not completely off because I don’t like that – the temperature a little, and all sounds from the corridor are gone, replaced with a gentle acoustic set from my favourite singer. It’s like I’m in my own personal oasis as I drift off to sleep. Other times, I like to have the bed in a relaxing position while I use the VR journeys to visit a beach or a winter village. I really love that the [tech] lets me smell as well as see – it feels like I’m really there [2, 3, 6, 10, 11].
I often forget that I’m in a shared room. Once I set the room to “privacy mode”, it’s like an isolation tank and I don’t hear, see, smell, feel, or sense anyone I’m sharing with. It’s amazing that all this happens without headphones because they’re still surprisingly difficult for me to get on and off with my left arm. It is nice sometimes to have company because I can share my frustrations and know that if I need help, they’re not too far away. But, most of the time, I keep my space in private mode [2, 3, 6, 7, 11, 12, 13, 18].
I had a midday nap today and don’t feel like getting out of bed. I thought about staying all afternoon, but caught the smell of some freshly baked muffins and know that if I get myself up I can go and try to make a cup of tea – I just hope the muffins are choc-chip and blueberry [10, 11]. As my bedroom transforms back into “active mode”, I realise my walking support is just out of reach. Thankfully, my [tech] lets me see that one of the nurses is on their way down the corridor and I can request a quick bit of assistance to fetch it [2]. When I do, it tells me that they have a couple of things to do first, but I don’t mind waiting a little while when I know they are coming [2, 3, 6, 13, 18]. I really appreciate that this rehab ward uses [tech] because it lets all of us operate like a family. Being able to see the incredible effort the nurses and other staff put in means that I really understand that sometimes they just aren’t going to be able to help me immediately [18]. It’s nice now that I’m a little further on my journey that I can request this kind of help from other people as well because it doesn’t take a nurse to push my walker across to me. Yesterday, one of my neighbour’s visitors helped me out of a similar situation when I dropped my fork – they went and grabbed me a new one from the kitchen in the common lounge. While they were in my room, they saw some of the pictures I had on my iWall and recognised that we grew up in the same part of Melbourne [6]. Such a small world. They can’t come in again for a while, but my [tech] is going to set up a time for a video chat with me, and the person they were actually here to visit, in a few days. We’ve booked the immersive [tech] in the [room] so that we can relax and play some [interactive game] together [2, 7, 10].
After they left my phone rang, and I had a long conversation with my friend Sue on the room speaker. I don’t remember ever using technology this much in the outside world, but it’s great to always feel connected to people even when I don’t have visitors. Thankfully I never have to worry about charging my devices because just about out every surface, my tray table, bedside table, side tables in the common rooms, and even the tables in the courtyards charge my devices wirelessly [2].