I was up with Thurston a lot last night. I can’t remember what times or how many hours but I know that it involved heavy lifting of numerous toys and pretending to understand the system that he was filing his Mr Men books in.
Being nocturnal is one of the aspects of caring for Thurston that never gets easier. When I go to bed in the evening, I never know if I will get to sleep past 12am or whether Thurston will need me to help him with whatever he needs to be doing.
He is still using Melatonin to get to sleep and it does the job. However, he has such a regular sleep routine that I’m not actually sure that it is the Melatonin that helps him to sleep, or if it is the bottle, Emmerdale, bed on the sofa that helps him to nod off. Recently I have wondered that if the Melatonin helps him to sleep, then perhaps that is why he is so wide awake when he wakes? As if perhaps he is only in a light sleep. I remember vividly the days before we had Melatonin prescribed, how he would quite literally fight me to sleep for hours. He would grab, scratch, pinch, slap, kick. It was soul destroying seeing how distressed he would get and I genuinely think he is scared of falling asleep. It’s a real dilemma trying to figure out if coming off the medication is worth a try.
Once he is awake in the night, he will drink his formula in bed with me and then get on with whatever needs doing. Once this week, it was acting out an episode of Emmerdale where a caravan was on fire. Another time it was moving all the toys from his bedroom downstairs and all the toys from downstairs up to his bedroom. Another time he wanted me to list to him all the fonts that could be italicised. That is a hard one to do at 1.30am!!!
The main issue with being nocturnal is that you still have to do everything you need to do during the daytime. Children still have to get to school on time, housework needs to be done, the baby needs feeding. Once in a while, Thurston will fall asleep at school but for the main part, he is puzzlingly capable of staying awake up to 20 hours a day. Given the fact that he is on a limited diet and is anaemic, it just doesn’t make any sense!
Since the new year, I have tried to catch up on sleep as and when possible but it just really doesn’t work for me. I’ve tried going to bed for an hour in the afternoon and before 10pm at night, but it seems to just mess up my body clock even more and I struggle to get to sleep at all. The only way I can get to sleep is to fall into bed in an exhausted heap!
When Thurston’s sleep is going through a really bad patch, we try to only do what is essential. Simple dinners, minimal housework etc. It’s not realistic to keep this up all the time though. We still want to have fun as a family and we want to go out and enjoy our time together. We have dragged ourselves to LegoLand on a couple of hours’ sleep and forced ourselves to go to London for the day with nothing but black coffee for energy. Sometimes I’m so tired that I physically shake, and I’m not sure what I can do to make it better.
Sleep is such a simple thing but a lack of sleep can be all consuming. Having a new baby or being too hot to sleep can be bad enough. Having a child with a sleep disorder who cannot be left by himself is a whole new ballgame. I just need to find some new tactics!
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