One of the things about being chronically ill is that it doesn’t keep to a timetable. For example as I type these words it’s bloody twenty past three and I’m wide awake. Over the years I’ve become very in tune with my body, and can now tell when I will be able to get back to sleep, and when I should give up and stick the kettle one. Tonight is one of the latter.
For me this part of being chronically ill was very hard to adjust to. Confession: I am terrified of the dark. Absolutely terrified. To give you an example, I sleep with a lamp on, and my husband had to adjust to this fact when I met him, as it was just never going to change. I have a cheapy dimmer lamp with three levels, and keep it on the lowest one. If I go up to bed before him (which, being chronically tired, is quite frequent), I will stick the lamp on its lowest setting, and snuggle down. A little while ago, I did just this, and when my husband came up to bed, I was fast asleep (and, I am assured, snoring). Figuring it would be fine as I was already out for the count, he switched off the plug. I immediately started screaming and was wide awake. I’ve never seen him move so fast turning it back on. It then took a long time to calm me back down. All in all, he learned the hard way not to turn the light off even if I’m snoring.
So for that given as context, it’s a bit of an insight into how evening and nighttime is a difficult thing to adjust to being a large part of your life, when your awake / asleep clock goes out of sync, the aforementioned Painsomnia, needing extra pain killers in the night, or just suddenly being wide awake like tonight (although admittedly this might be pain, but my previous dose of strong pain killers are still in function, so I just don’t know it yet). Learning to be awake in the evening, and to move around in the dark, very frequently, was a long difficult journey in itself, and even now, I still light the house up “like Blackpool illuminations” as every parent everywhere would have said in the 90s.
Becoming used to spending time in the darkness is a difficult thing if you are totally petrified of it. Even to be sat here in the nighttime silence and dark and scariness, I have a light on, and the TV on in the background very low, so I don’t get too frightened. Having been ill for a decade now, I can just bout manage it, but it is still scary.
I’m sure to many an adult, like many of the other things I have described, this must seem weird and even laughable if you haven’t experienced it. But I’m writing this partially so I can send a cyber high five to any other spoonie going through that adjustment period, and also to any other adult who is scared of the dark. It’s rather mocked, even as a child, but hey, you have the empathy of this cripple.