At Night

A group member asked if when we dream, we have AS in our dreams with its attendant pain like she does when in pain in the night. I told her, no. What happens with me is that I have nightmares. Always have no matter what causes the pain-post op recovery or bones. I have nightmares when in pain in the night.

They’ve been getting worse. Prolonged. More personal. Usually, something bad has happened-like a dead father. Or something bad WILL happen and I have to escape. But now, it’s happening to me directly. Two nights ago, I was being viciously assaulted -r*ped. I’d try run to freedom and help, and THAT man would r*pe me where your bowel movement comes out. THAT back passage pain remained so strong throughout the multiple dreams that I was sure I’d wake up with some weird buttock (u guess my SI bones were screaming) pain. I’d wake myself up (or so I thought) but I’d wake up into a new nightmare. I ended up thinking I was in a coma and would never be able to wake up, stuck in horrendous dreams.

I did wake up.

Last night, bombers were attacking our university and chasing us individually. I ran to a shopping centre-there was a knife man. I couldn’t run away. My legs wouldn’t move.

And of course when I did wake up, heart pounding as always, I was in extreme pain. My knees are getting worse. More swollen and more sore, for longer. Same with elbows, right shoulder, fingers, neck and back. Neck today has been bad. No position was pain free at all. Nothing helped. My husband was asleep and I didn’t want to try shift too much in case I woke him. My daughter has been awake since three am and I heard every bit of her laughter till I woke him at 6am to go check her diaper.

I discovered yesterday when trying it with my husband and child, that I can no longer lie on my tummy and go up much with my hands on the floor and arms not. I’m as high up as when my elbows are bent. So that’s what I will stick with. I won’t let this stupid disease bring me down so much that I give up on my AS exercises.

And I’m not done fighting. I emailed the principal officer for the med aid and have asked what requirements they have that I haven’t met yet. I asked the pharmacy to do my last box of the Enbrel. I had canceled it when we were sure I would be approved for Cosentyx. I did my third post-op Enbrel injection on Friday. I’ve bought sanitizer for the car for after I’ve paid for fuel or been to the pharmacy, I’m wiping trolley handles down and try to remember not to bite my nails. I’ve put a mask in each bag I take with me to the store or pharmacy. I’m ordering stuff even when I can send the children as I’m scared THEY will catch a cold or something while waiting in a queue.

I’m down but not out. I couldn’t think of anything positive to say to God yesterday. The pain and fatigue were too intense. And today, the pain worse. I couldn’t post a positive status.

I’m down.

But not out.