Post 256: I’ve got pain all of the time that I’m awake…
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In my head and in my back
the pain controls my everything.
We wake together but never kiss,
and sleep together and no one cares.
The invisible bastard who no-one sees,
that works with PC to eat me up.
One day I’ll be a dribbling mess,
and morphine and I will fight no more.
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There’s so much going on just now that I feel like I should be able to get into the blog, but when it comes down to it, it’s a game of tag with Oramorph that I never win.
To get some peace in my mind I have to forgo the pain relief — and there’s the problem. My nerves are tattered and torn, and what used to be natural and automatic in word terms is now a test of time and effort.
I’ve realised the blog will not end by my choice.
It will be my body that chooses the blogs last day.
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And breathe…
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When I completed the new ESA form today, it turned out to be just two pieces of paper — digital paper — summarising this terrible year.
One was a sick note for three months that I never expected to use, which I uploaded via the gov.com ESA link.
The other was an SSP1 form confirming the end of the 28 weeks of statutory sick pay and directing me to ESA to continue any support. The S in ESA.
After a few phone calls I discovered the top-secret location in Wolverhampton where the form had to be sent, complete with a 12-digit freepost code to cover the postage.
Of course it was a digital copy from my employer, so all I had to do was print it, find an envelope, and post it.
I’ll wait patiently to see if that really is that, knowing that the worst thing will be if I’m refused this credit. We shall wait and see.
Perhaps I’ll get lucky.
Tomorrow I’ll start on the PIP application — all 24 pages of it, if it arrives.
But on the postal bright side, there were a few letters bundled together with elastic bands. Among them was the one I’d been waiting for.
The Blue Badge.
How about that.
But with every up there is a down.
I started reading the thick pamphlet explaining how to use the badge and timer. It was early afternoon, I was relaxed, and I’d only just opened the letters, so I took it slowly.
I was in the kitchen but needed a cuppa, so I left the booklet unattended while I went to the other end of the house. When I came back, it had acquired a wise old owl sitting right where I’d left it. A few seconds later I gently took it off her — she was finished with it.
Fabulous.
I really need to curb my mind’s imaginative side roads — the thoughts that appear and disappear uncontrollably. I’m reversing out of one right now. It’s blinkin’ hard not to enjoy the lift you get when you’re on the scent of a diversion.
I’m not going to wreak havoc on myself, even though I can’t tell which of the three me’s I am today.
So I head into the TV lounge with the booklet and stare at the pages all afternoon. Is it written in a foreign language? I’m confused and have to re-read the same page again and again.
By late afternoon I give up. I tell my Darling,
“I’ll get our youngest to read it to me tomorrow.”
Now I’m thinking about the PIP form. Twenty-four pages. It might be out of my league.
I may need help — Age Concern or CAB — to deal with the concentration issues, wandering fingers, and day-dreaming.
Is it possible I’ve fallen into a black hole of cancer support that I thought was still years away? And it’s been
Boo hoo. I’m not ready for this.
I’ll park here and rest a bit more. I’m grasping at fruit that aren’t there on my bed.
I’m in the wrong room.
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My Darling and I head to bed.
I need her help to get my socks off, to get into bed, to check I’ve had enough doses today.
Oh my lord — I’m not in control of anything. Not even the dishes.
I feel like a burden to my Darling.
Car. House. Self.
It’s all too much. It’s a bloody nightmare.
She gives me a last dose of liquid solace,
and I fall asleep quickly and easily.
Good night, cruel world.
