So lockdown continues and, alongside it, so does my own body lock-in, as this damn disease progresses to my arms. My left arm is so heavy I can barely lift it now so is pretty useless. My right arm’s movement is becoming restricted too though it doesn’t yet feel heavy and my hand is still fine. I must admit I’m terrified of losing use of both arms and this is now affecting my sleep (having just conquered coronavirus night terrors!). Arms are so much more useful than legs, I’ve realised!
Each stage of this disease is hard to come to terms with but this seems the scariest yet. All along I’ve begged it to “just stop now, please stop now and I promise I’ll be grateful“ but it pays no heed and marches relentlessly on.
When I wake in the night, I’m often too warm which only increases my anxiety and I’ve had to get Sue up to move the duvet off me, open my window wider and cool my face with a cold flannel (have I mentioned how wonderful my wife is?). Once I’m cooler I’m much calmer.
In light of this, we splashed out on a couple of Dyson fans – you know, the blade-less ones. We’ve set mine up and it’s fab. It has a remote control so I can turn it on and off, increase/decrease power and even set a timer for it to go off – all from across the room in my bed! And without having to disturb Sue. It works a treat. Oh I do love a gadget!
I’m hoping that even when my right arm goes I’ll still be able to operate the control. I have to think about what I really need during the night. I’ve already had to adapt to sleeping on my back and once I’m in position after the carers leave I’m stuck like that all night. Luckily I can raise and lower the top of the bed as it’s a hospital style one, and that helps. Still, I miss being able to turn over and lie on my side.
I need my phone so I can listen to sleep music and ring Sue if necessary, and perhaps my kindle. I’ll have to have those in or on the bed with me as I won’t be able to get them off my table. Hopefully I’ll do what I’ve done all along – adjust and adapt. What other choice do I have?
Generally though, I’m doing better. Whereas previously I was staying in bed part of the day, for the last week I’ve been staying up all day. Of course the lovely weather helps – when it’s really warm I like to sit in our beautiful new garden with Sue, reading and listening to the birds sing. And now my last carer call of the day is at 10/10.30pm, as opposed to 8/8.30pm, which is great as Sue and I get all evening together. Perfect for the longer evenings.
One day last week was significantly cheered by an unexpected phone call. It was from one of my very favourite carers – the one who told me shut up! She’s currently off work ill and rang to say she’s missing us desperately, more than her own sisters, and she speaks about us to her husband so much he feels like he knows us! I miss her too. By the end of the call all three of us were in tears, we were so happy to hear from each other. It really lifted me. And moved me beyond words that she should care so much.
Things have settled somewhat with regard to the carers. We know we’re lucky that we get to see and talk to different people every day. We’ve got to know the “new” ones and most of them are absolutely brilliant. Not to mention entertaining.
One afternoon one was singing as she moved around the bedroom and bathroom. “I’ve a voice of an angel, haven’t I Sar” she exclaimed. As soon as I could, I responded “yes, a Hell’s angel.” 🤣
Of course we clap for carers every Thursday evening (as I can’t clap, I’ve downloaded an “applause” app!), but we’re grateful for them every single day. Whatever lies ahead for me, it’s good to know they’ll be there for my corny jokes!