This morning was a particularly bad morning for me pain-wise, perhaps the worst I’ve felt since leaving the hospital. It came after an horrendous night without sleep. I’d gone to bed in a huge amount of pain; it had been a struggle even to get me in again and once there I could barely move, not even to shuffle myself over properly or to move the duvet. I knew that I would need to get up for the toilet during the night too, thanks to all the steroid water retention (why does it always make you pee at night?), and so was a bit concerned but managed to fall asleep for a few hours at least.
I woke at about midnight, when my boyfriend came to bed, and sure enough I needed the toilet. I used the pillow lifter to try and sit myself up but wasn’t positioned ideally and so still found myself stuck on my back, unable to move my arms or legs. My boyfriend helped, but even that brought me to tears and it took a while before I was brave enough to just ‘go for it’ in one big go – he pulled me up and it felt like my whole body was being torn apart – neck, arms, chest, hips, knees, the whole lot were excruciating. Once on my feet I collapsed against him and just cried. It was a huge ordeal getting to the toilet with my zimmer and (sorry if tmi) I couldn’t sit when I got there, so had find some way of going whilst standing, sobbing the whole time. Back in the bedroom, I was too scared to try sitting on the bed, nevermind lying down, and just stood crying at my frame not knowing what to do with myself. I even wondered if it would be possible to stand the whole night, anything to save me from having to go through the getting up again.
After weighing up the different options, we decided that my best bet would be to lie propped up in bed, with the pillow lifter raised. Hopefully, this would mean that my joints/muscles would not seize up as they seemed to be doing when I was lying flat. I’m not sure what happens, if it is something to do with gravity, but my body absolutely does not like lying down flat right now. It took about half an hour to get me back into bed and comfortable, as I was still unable to move my limbs or do anything myself. Eventually we managed, tucking pillows under my knees and left arm to support them. I was still too scared (and in too much pain) to fall asleep again though and so I spent the rest of the night sat listening to my audiobooks, taking Oramorph hourly and dozing every now again. Not the best night’s sleep but preferable to the pain and struggle we’d had to contend with.
I was still in a lot of pain this morning and only had a tiny bit of movement in my joints early on, although this improved as the day went on. I stayed in my pyjamas though, because even my carer was unable to dress me. The Occupational therapist brought someone to fit my bath lift in the afternoon, which was a nice surprise. I didn’t get to see the demonstration, as I was still confined to my chair at this point, but I could hear what was going on from down the corridor and it wasn’t sounding promising. The bath lift couldn’t fit where it was supposed to go, because of the shape of our bath and the position of its taps, and although they did manage to fit it, they sounded doubtful that I’d be able to use it and began re-discussing the options for the shower, which had previously been declared a no-go.
My heart sank. I’d been so looking forward to the prospect of a hot bath after months of going without. They showed my boyfriend how to use it safely and said all we could do was give it a go and let them know how it went. Later on this evening, with several doses of painkillers down me, I was feeling a bit brighter and determined to have a bath before my hospital trip tomorrow – there’s something about needing to be freshly bathed for these things don’t you think? So, with the help of my boyfriend, I decided to give it a go, not really expecting to get very far. But we did and it was bliss!
The bath lift itself consists of a plastic chair on an X-frame suckered to the bottom of the bath (I’ll post photos when I can). There are flaps on either side of the chair that lie flat across the bath edge, which you use to slide onto it. This is the hardest part for me, since I still can’t lift or move my legs from the hips; but even so, it was pretty easy to overcome – I perched myself on the bath edge, shuffled onto the flap and backwards to the chair as my boyfriend lifted and moved my legs round into the bath. Now seated in the chair, we used the remote control (it is all battery powered) to gently lower the seat into the bath. It does this by gradually folding the X-frame below you; this doesn’t look like much but actually feels very safe and sturdy. As you go down, the side flaps fold up next to you and, once you are at the bottom, the chair itself reclines slightly, (you can adjust this to your own comfort needs).
The OT and lift fitter had been worried that I wouldn’t have enough leg space in the bath once in, since it had to be fitted further down than usual, but luckily I only have little legs and it was perfect! You don’t get as much water coverage as you would having a regular bath, because you are slightly raised on the seat, but it’s plenty enough to benefit from the soothing warm water and to have a good wash, plus we are planning on getting a couple of those big ‘car wash’ sponges to give me a soaking. Another thing we learnt is to make sure that the bathroom is properly heated; because you aren’t entirely covered by the hot water, exposed wet bits (ie arms) can get chilly rather quickly! Apart from that though, it was brilliant – straightforward, comfortable, safe and pain-free.
Getting out was just as easy. You use the remote to bring the chair into the upright position and then it slowly raises you out of the water and towards the level of the bath edge again. The flaps are tucked in, but as you get to the top they fold out to provide the flat surface used to transfer yourself. Again, I needed a bit of help to swing my legs over the side but eventually I think I will be able to do that on my own. In fact, I could have done with one of these years ago. I have always struggled getting in and out of the bath, even when ‘well’, what with trying to bend unruly joints and bear weight on weedy limbs. My normal technique was to semi fall in and to hurl myself out; it’s surprising I never did myself an injury!!
So, in the end, the day took a turn for the better. I’ll defintely be getting a lot of use out of the bath lift; in fact, I’m already looking forward to my next go. Not looking forward to going to bed so much though and think I’ll stick to dozing propped up. At least I have something to look forward to tomorrow, with starting my new medication, and sleep is the only way to get there…
Wish me luck,