The bed has arrived! We have moved to the downstairs bedroom and our shower room is complete.
A few of the neighbours have had a go on the bed. The massage feature got different reactions; the girls loved it but the boys said it felt weird. I like it – it is so relaxing.
We tried to snap Martin in half when he tried it…
But it only goes so far (perhaps the bed manufacturer had thought of that).
I’ve only just got used to the remote control – so many buttons. Though Dexter, our grandson, loves pushing the buttons.
I find it more comfortable than the foam wedge I was using because you can bring your knees up This stops you slipping down in the night and waking up in a heap at the bottom of the bed.
How am I doing?
Recently I’ve had trouble breathing lying down at night, so I’ve had to play with the bed and find optimal settings so I can sleep and breathe and I don’t feeling I’m sleeping in economy on a plane. So the new bed has been useful.
Sunday night I woke up coughing on my own saliva (as opposed to someone else’s? – Ew?!). It woke me up several times in the night. I was more tired than normal the next day. Julia recommended I try the Hyoscine patches that I got prescribed a while ago (in the days before the Scream Extractor) – It is a drug to help with travel sickness – but has the side effect of drying up your mouth.
Since going on the patches I haven’t choked in the night, A real result. Those medical people are clever.
Wednesday I went to a scheduled ventilation appointment at the Churchill hospital. We expected them to say my breathing had deteriorated further and then give me another gadget to help me breathe at night, Non-invasive ventilation (NIV), the device matches your breathing pattern and helps push more air in as you take a breath. A big step for both of us. Each time we get a new gadget it reminds Julia of the MND patients she has had in the past.
The physio did all the usual tests; taking arterial blood from my ear lobe, and measuring my lung function and cough and to all our surprise they all had improved from last time (4 months ago)!
Weird. Maybe all that prayer is getting answered slowly.
If you’re into prayer: Thanks for all the prayers. Thank God for the amazing ventilation result this week and pray that the tiredness goes soon. Julia says I have regressed to a teenager; difficult to get me out of bed in the morning and grunting.
Also my speech is pretty bad I’ve got a gadget to help with that. More in the next blog posting…