Zzzzzz

I don’t really like bedtime now. I am rarely, if ever, ‘sleep tired’ and so I have to consciously coax my brain into falling asleep. It is 8:30pm and I have come upstairs in accordance with my sleep hygiene routine. It is so my body and brain have time to relax and wind down before we tackle the task of sleeping. It is so that I can have a calm hour or two. It is not that it isn’t calm downstairs. Everyone is quietly watching the tele, but even that is apparently too much to cope with if I want to be able to get to sleep. My cousin and grandparents and aunties are downstairs aswell this evening. I feel boring and antisocial for having to come away to bed before everyone else. I wanted nothing more than to be able to share a room with my sister and cousin but my body and brain weren’t having it. I have to stay in a room on my own. I feel like I am missing out on nothing in particular other than time with some of my favourite people. It is times like this that remind me I’m not normal anymore and I’m not well enough to even pretend that I’m normal.

I tend not to have music on during these hours upstairs on my own. Singing along, even in my head, is tiring but can also wake me up at a time when I want the opposite to happen. Lyric-less music is okay if it’s mellow. Usually I watch a DVD. Nothing that will set the dreaded adrenaline pumping through my body though. It’s best to watch something I’ve already seen before. Something with a very basic plot to follow so my mind won’t be pushed too hard trying to concentrate. Finding Nemo is a good one. Monsters Inc and Despicable Me are other favourites of mine! Simple minds…


I don’t have the ‘big light’ on during this time in the evening. Just my lamps and maybe a few candles. How romantic! I make sure I’m warm enough too. If I get cold it takes a very long time for my body to warm up and getting to sleep when I’m even a little bit chilly is impossible. I have a small sofa in my room so I might sometimes lie or that, or I’ll be in bed. It depends on how well my body is behaving. On the days when I am well enough to read I might read a chapter or two in bed instead of watching a DVD. No gripping novels but something easy and with a happy ending! I spend almost every evening in this way. I have to be alone because it is too much to even sit with another human being for some reason. Being alone makes it possible to fully relax. Going through these motions. It is a much nicer way to spend my time than some other M.E. sufferers. It is a much nicer way to spend my evenings than how I had to spend them only 6 months ago.


My evenings used to be about meeting up with friends, going to the cinema, for meals out, preparing for a night out dancing the night away. I am lucky that I have those memories, but I am sad that that life is in the past. In order to recover, in order to not deteriorate, in order to simply survive, I have to be regimented with myself and stick to having good sleep hygiene. No ticking clock in my room, no TV after a certain time, no laptop after a certain time…I can’t manage sleepovers anymore either so a chilled, girlie night in isn’t an option. Oh how my life has changed. But I have worked too hard at adapting my life to give up now.

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