Trouble Falling AS-leep

Last updated: April 2022

I have always been a bit of a night owl, but since AS forced its way into my life, it has taken things to a whole new level. The fact that I’m writing this article at 5am tells you just how much of an issue it is for me.

How bad it is

I’m not sure what time zone my body thinks it’s in, but I usually find myself drifting off around 7am and waking up at some godforsaken time in the afternoon.

Frankly, if I can fall asleep before the morning light or wake up before the time on my phone has ‘pm’ written next to it, then I consider it a win. Frustratingly, I find myself missing out on most of the sunlight hours, which are few and far between in the UK. This certainly has a knock-on effect on my mood and mental health.

When I have managed to talk my body into having an early night, I find myself waking up around midnight and unable to get back to sleep again and reluctantly start my day in the middle of the night. Not an ideal situation.

Most days I end up having my breakfast around 3pm. This would be fine if I was doing intermittent fasting, but sadly I don’t think I can count it as that! I do often joke with my friends about my sleeping pattern when I reply to their morning texts over my afternoon cereal but lack of sleep is no joke.

The original cause

My sleep issues started when I was first diagnosed and was still waiting to receive treatment. The tremendous pain I was in meant I had ridiculously late nights. It’s pretty impossible to doze off when your entire body feels like it’s on fire.

This forced me to experiment with different sleeping positions to find one that was comfortable enough to allow for sleep. I think it was the exhausting workouts from all these body adjustments that finally got me to drift off.

Fortunately, since starting biologics I have been able to keep my pain levels under control. However, it hasn’t stopped my condition keeping me up into the early (and late) hours of the morning.

The cause now

I know it sounds strange to say but the main cause of my shambolic body clock is fatigue. It is very frustrating as not only does it prevent me from getting things done during the (very antisocial) hours I’m conscious for but it stops me from resting properly at night. I find myself in a state of limbo where I am too tired to do anything, yet not tired enough to snooze. I find myself lying in bed for hours staring into the darkness, hoping my body will give in and let me sleep.

A lot of the time I get sick of waiting for my body to get on board with my sleeping plans and I try to get a few productive things done (I’ll let you judge of whether writing this article counts as productive). I realize that it’s probably counter productive and does keep me up later but at least I’m able to complete the jobs I will sleep too late to do the next day.

What I’ve tried

I have made countless attempts to rectify my sleeping pattern to no avail. I initially tried to exhaust myself as much as possible during the day. I would force myself to work out, do housework, and anything that required the most brain power and energy to complete. However, this plan backfired as I would find myself passing out for a non-consensual nap before the evening arrived. Then after waking up from that, I would stay up even later as my body wouldn’t ready for another sleeping session.

I tried listening to podcasts but I found that even the most mundane ones stimulated my mind and I ended up feeling more awake. I’ve also tried a few "sleepy teas" but if anything they have kept me up later with extra trips to the bathroom.

Moving forward

I wish I could end this article with a list of solutions that I have found along the way but unfortunately I am still searching. I find it so frustrating that AS takes no time off and troubles us throughout the day AND night.

I have booked an appointment with my doctor for next week to discuss this, so hopefully I shall have some fresh ideas then. However, if anyone has any sleeping tips they wish to share that would be greatly appreciated!

I do hope nobody else out there has experienced sleep deprivation to the same extent as me. However, if you have found your condition has affected your sleep pattern, then please feel free to let me know about your experiences in the comments.

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