Post 232: I want to do more — but I can’t.
Last night’s bed-rest was the lousiest I’ve had in ages—pain between a 6 and a 9, and comfort stuck at a solid 9.
These aren’t scales I usually think in, but the last time I felt like this was when the paramedics and hospice team were here sorting me out two-and-a-bit months ago.
Right now, I honestly don’t know where to put myself. Bed? Chair? Hanging from the rafters?
The problem is that in my heart of hearts I want these three months to be a right royal success. To do the things I’ve started imagining in my head—positive events, good days out, maybe even a bit of continental travel.
But am I fit enough?
Will I have to cancel?
Is this my life now?
Cancellation after cancellation this year has eroded me, but even then I felt better than I do today. It’s a good job I still have an appetite; if I didn’t, I suspect I’d already be in the hospice or hospital ward.
So, what happened today? It won’t take long to explain.
My Darling left for work at silly o’clock and wasn’t back until just after 11 a.m. I knew she’d want to go straight to bed when she got home.
While she rested, my plan was to sneak off to Timsons for a digital passport photo. Seven months left on the current one—but if we want to go anywhere I’ll be needing a new one by the end of January.
When she came through the door, the plan could have launched but it didn’t.
She shook off her coat, kicked off her shoes, and walked toward me in the TV lounge where I was waiting. She was tired—she said as much—but asked how I was.
And that’s when the plan hit the buffers.
I couldn’t get a word out. As she came closer, all I managed was a terrible impersonation of Beaker from The Muppets. After a few squeaks I was enveloped in cold arms, warm words, and a complete and immediate emotional collapse. The tears I had been warming up for hours.
Eventually I managed a few words—pain, pills, oramorph—which started to make sense, and my Darling guided me to the slowest stair-chair in the West and back up to bed.
I took off the clothes I’d put on for the photo trip, got tucked in with loads of hugs and kisses, and tried to get comfortable while this brand-new pain hammered my lower back. Now I had pain on the left, pain on the right, pain in the shoulders and the lower back. All I need is toothache and earache for the full set.
From 11 to 4 I tried sleeping this way and that—exactly like last night. By six my Darling was up again, as exhausted as ever but hungry. She cooked halloumi over Mediterranean veg with roasted sliced potatoes—one of my favourites. A little oasis of normality in an otherwise grim day.
Afterwards I went straight back to the same uncomfortable cycle of this way, that way, nothing helping.
This is not what I call a good start to my three-month break from clinical interference. It feels more like the prelude to another round of pain-management sessions with the hospice.
The pains are pulsing all around me now; this morning it was only in my lumbar area. If this keeps up, I’ll have to call the nurse-line. It feels like I’m about to be stepped up another level in pain medication, and the suddenness of it is frightening.
When will I get a break?
It’s hard not to feel dramatic when I was only told a couple of days ago that there was “nothing much to report” inside me. I beg to differ. My pain levels are through the roof, and I’m trying very hard to stay calm.
I want tomorrow to be calm. I want to be able to do something—anything I want to do. I’m fed up with being stuck in my bedroom. It’s not fair. I want this three-month break away from this shite. I’m astonished at how quickly it all changes. Why me?
Back to four-hourly oramorph gulps again, though it doesn’t seem to do much good.
That’s my day. I hope yours was better than mine.
Good night.
(I’ve been up all night in severe pain I’m going in with my Darling to work as a patient: she works in A&E at the local hospital. Her shift starts at 4:45am. After chatting with the Hospice and realising I need some pain relief help now, not tomorrow, so it’s best I go to A&E)
