2014 has seen the introduction of the nippy at night. From my point of view, it’s pretty noisy but I’ve managed to sleep pretty well most nights so far, thanks for asking! Poor Roch dreaded having it on at night. He didn’t keep it on all night at first, bearing it up to 4am or 5am, when he would ask me to remove it. Last night we tried something different, as I had had a migraine and needed a good night’s sleep to see it off completely. Kate and I set the nippy up on the hospital table over the bed within easy reach. Roch made sure he could press the button to turn it off – he can take the mask off by himself. Armed with Kindle, I-Phone, I-Pad and environmental control I-Phone, we left him alone. Kate was on call but Roch slept right through until 7.30am, nippy on. He reports that although he still felt tired, his mood was better during the day. Time will tell. The important thing is for him to get used to having it on at night. I slept like a baby upstairs. We are going to try the same thing tonight, as I have an early start for work tomorrow, but then I’ll go back to the marital bed and see if I can sleep through when he doesn’t need the mask to be removed during the night.
That bed has been moved downstairs, raised, shifted into a different position in the room, had a bedrail and extra mattress added (after several different types were trialled) with the addition of a sliding sheet – we are trying everything to hang onto it for as long as we can. The monkey has so far failed to dislodge me, although I now occupy a smaller space due to the smaller extra mattress on top of our own mattress and frequently wake up to find myself sliding out onto the floor!
So, 2014 – who would have thought we’d make it this far? So many milestones have been passed, so many losses mourned since June 2009. We don’t have a date yet for the PEG operation but I’ll keep you posted.
As time goes on I find I am less accepting of what has happened to Roch and feeling angrier. Less tolerant and more impatient with people who really don’t ‘get it’. More fragile, but more empathic to other people’s suffering and loss. I find it more difficult to come to the blog page and guiltier about my absence.
I thought I would share with you an unedited extract from my daily writing journal (unedited apart from insert in bold) – a peek into the stuff that doesn't make it into the blog. But maybe it should.
As Hemingway said, "Write hard and fast about what hurts."
“Why do I half do things? And spend so much time on stuff that doesn’t matter? Or well now maybe it matters to me. Here I am trying, trying to get some stuff out of my head and down on the page so that ‘ideas flood in’. Have spent so much time reading about writing, too much time on twitter today – my eyes hurt. How to motivate myself and get through writer’s block; I could – let’s see, clear the clutter, go for a walk, have a shower (I need one), put on some lipstick, make a big pot of tea and pretend to be Virgina Woolf or Ernest Hemingway and write (actually that’s great advice courtesy of @LauraPepWu and I intend to follow it). If it was Ernest Hemingway it would probably be more like a bottle of whiskey, but I get the idea. Am I wasting time up here while Roch is downstairs with Jenny to look after him? Probably should have been trying to write hours ago. I need some space in my head! Of course now I haven’t eaten too much in the past two days so my digestive system will be out of kilter. Moan groan shout roar scream kick up and make merry hell. Feeling like shouting or destroying something, smashing a plate or yelling at the top of my voice. I’m such a good girl, always doing the right thing, in control of myself. What would it feel like to let go? Lamp someone, (see, I like the word but I wouldn’t want to actually hurt anyone deliberately – why? Because there would be consequences? Or because I wouldn’t actually want to hurt anyone? Hmm…)
Knuckles connecting with bone and flesh – crrrunch!! Beat the monkey to death maybe – there’s a fantasy worth having. Fur and blood flying, sticking to the surface of the wooden bat. Fucking monkey, taking my life away (and Roch’s of course). Fed up trying to list all the things in my life to be grateful for – that’s what they tell you to do. I know there are so many things to be grateful for but such a lot sucks! I am allowed to rail against it!! Now, if I could blog every day for 15 minutes – would that help? That couldn’t be too hard, right? HA! HA HA HA HA HA HA HA HA HAAAAAAAA FUCK IT! YOU’LL NEVER DO IT! No? Who sez? Me, I say. Me, your inner voice of truth and despair. Listen and weep. For you will never amount to anything in this world --------------Oh shut the fuck up I’ll give it a try.”
Fifteen minutes every day, it can’t be that hard, can it?