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It’s currently 4am as I write this. I’m sitting on my rocking chair (yes I have a granny chair), wrapped up in a duvet, drinking a mug of sleepy time tea, and dipping in and out of ‘The Lord of The Rings’ book through blurry tired eyes, trying to make myself sleepy enough to go back to sleep. I’ve been doing this on and off for months now.

Sometimes the not sleeping part doesn’t bother me, it’s more the fact that no one else is up, it can get a bit lonely. Why does it feel like the WHOLE world is asleep and I’m the only one up?

Also, having to be super quiet so you don’t wake everyone else up in the household is such a pain in the bum bum. You have to tiptoe about and make sure you don’t make any noise. I can find this super frustrating, especially when I’m in a lot of pain and just want to sob loudly and feel sorry for myself. So I wrote a silly poem about it to make myself feel better…

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Don’t wake the healthy 
Pain strikes 3am
my body like clockwork in its dysfunction.
I creep around in the witching hour
trying not to wake the healthy.
Each step to the kitchen
electrocutes my spine.
I stifle the urge to scream,
because we can’t wake the healthy.
I gulp down water like its medicine
trying to dilute the sickness.
I pick up a book, but it’s too late,
or is it too early for words?
I put on the TV for company,
turning the voices down to a hush,
as we mustn’t wake the healthy.
I stumble around in near darkness,
wincing at every noise
my clumsy hands make.
I open the window to cool
my tear flushed cheeks,
stopping dead as it creaks.
I pause to listen-
I try to make my breath ghost-like,
my anxious heart a quiet drum.
Did I wake the healthy?
I hear the resident owl hoot
and hoot again.
It's call cuts through the silence
followed by a loud shriek
that could wake the dead.
He doesn’t give a fuck
if he wakes the healthy.

Since being diagnosed with Ankylosing spondylitis, I’ve found sleep one of the hardest thing to master. It gets to about 3am and my body wakes me up right on cue. It’s usually pain that does it. The thing with anky spon is that a lack of movement makes your joints stiffen which then leads to pain. I feel like the Tinman in the Wizard of Oz, needing my next hit of oil on my joints. ‘Oil my neck!’, I wunna shout out in the night.

For me personally, I mostly get horrendous stiffness around my ribs, neck and lower back. When I take a deep breath I can literally hear my ribs crack and creak (ew) if I don’t stretch regularly.

During the day this is easier to manage as I can stretch and walk around at regular intervals, but obviously at night, when you’re sleeping, you can’t really do that as much. So all the stiffness starts to accumulate until it hits 3am and my body screams at me ‘I’ve had enough, I need to move now, wake up!’. It's not the type of pain you can simply ignore.

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At first I would wake up, get out of bed, walk around a bit, stretch, and I could slip back into bed and sleep until morning. At one point, I even prolonged the waking up from 3am, to around 4 or 5am instead, by administering certain protocols before bed (it was like a military operation). For instance, a hot shower or bath, covering myself in ibuprofen gel, taking magnesium tablets, light stretches, meditation, journaling, praying to the sleep gods with a sacrificial offering (ok maybe not the last one, but I thought about it!).

I kept the room dark and cool. We updated our mattress. I put bamboo and cotton sheets on the bed. My partner and I went to bed at the same time each night and woke up at similar times to get into a good routine. I tracked my sleep patterns with my Whoop watch.

I made sure to balance my activity through the day. Too much activity and fatigue would make things worse. But if I did no exercise, the stiffness would make things worse. I made sure to tire out my brain by reading and learning new things, but not too much, or again the fatigue would make it worse.

It was all a fine balancing act.

I did everything I could possibly think of!

And most of the time it worked. I established a really good sleep routine and for almost 2 years it worked pretty well. Not as good as before I got sick of course, but manageable.

However, recently, even with all the above routines, I still can’t sleep. And now it’s not even staying asleep that’s the problem, it’s also getting to sleep in the first place that’s become an issue.

It’s now turned into full blown insomnia. Which sucks.

However, it’s not the first time I’ve had a period of insomnia. That didn’t last for ever, so I have hope that this time it won’t last either. I don’t want to panic or turn to sleep medications just yet.

The last time I had insomnia was over 10 years ago now, when I lived in Canada (a story for another day). Which coincidentally is when I think my first symptoms of anky spon started to rear it’s ugly head (although I didn’t know it at the time). I had painful IBS symptoms, headaches, neck aches, vertigo. I was also terribly homesick with out of control anxiety, pretty sure I had Seasonal Affective Disorder (SAD), and it was also around this time of year (autumn/winter time) which I’ve always struggled with, mood wise, due to the lack of sunshine.

So whilst I don’t suffer from all of those things now, I can see some correlations and patterns.

I know I’m not alone in this. I read that up to 91% of people with ankylosing spondylitis also have issues with their sleep. Mainly due to things like pain and stiffness. However, they did mention that mental health issues can also play a part. People with anky spon are more likely to suffer from things like depression and anxiety- partly due to the physical aspects of having raging inflammation in their body, but also because of the social and mental toll that having a chronic illness can have on a person.

I’ve been feeling a lot better recently regarding my depression and anxiety. I feel more stable. Like there are less violent ups and downs and more of a flattened out wave if that makes sense. More stable than I think I’ve ever felt in my life, despite everything going on with me. I feel I’ve become more resilient. I’ve become less hypervigilant. Less adrenaline spikes. I feel less guilty for taking care of myself now. I like myself more. I let myself feel all the emotions instead of bottling them up like a pressure cooker.

But I was thinking, maybe insomnia is happening right now because all this stored anxiety is finally releasing itself from my body? It just seems a weird coincidence to me that I had a huge ‘Aha’ breakthrough moment in my therapy sessions a month back, and that’s exactly when the insomnia started.

This time the insomnia feels different, it’s almost like a restless energy that needs to come out. Like the human version of the zoomies. I don’t feel anxious or even worried about having the insomnia right now. I don’t have racing thoughts or a thudding heart. I don’t feel pressured to ‘fix it’ like I did last time. Yes, it’s super inconvenient and I wish I didn’t have it. But I feel like it’s just something my body has to do. I don’t even feel that foggy headed the next day after getting so little sleep. Which I know sounds a little ‘woo woo’, but my gut is saying to me, just let it all out, let your body do what it needs to do, don’t worry about it, this phase will pass in due course.

It’s like when your body finally feels safe enough to rest, that’s when your body gets sick or has a flare up. Like when you finally take a holiday break and that’s when you get a cold. Or you have a panic attack after the stressful event, once your adrenaline has reduced. Apparently it’s called the ‘let-down effect’.

I’ve been reading books like ‘The Body Keeps the Score’ by Bessell van der Kolk and ‘The Body says No’ by Gabor Maté, which have been really interesting and talk a lot about the importance of this release of tension stored in the body due to things like unresolved grief.

As well as therapy, I’ve been working a lot recently on letting myself feel all the emotions and tuning in to what my body needs, and most importantly not feeling guilty about it.

I try to pinpoint exactly what I’m feeling, but less about trying to think through it and it’s origin or rationalise it with logic, but more, asking myself where in the body am I feeling this tension, and then working on that part of my body- be it with movement, massage, yoga, meditation, dance, singing, creativity, deep breathing, having a cry etc.

I may look on the outside like I’m an ‘emotional mess’ at times, but actually, letting out my emotions in this productive way has made me so much calmer and steadier. I do understand I can’t let everything out whenever I want, I’m not a hysterical toddler, but there are ways that I can regularly incorporate this tension release and self-awareness in my every day life, in a safe and more ‘productive’ way.

So I think insomnia may be rearing it’s head at this time for me due to physical, mental and emotional reasons. However, I’m trying to take the pressure off myself and not get too stressed about it. I’m going to try and make my body feel as safe and cosy as possible, releasing all that pent up tension that's been stored up for so many decades, in the best ways I know how.

….guilt free.

So for now I’m going to rock away in my rocking chair, read my fiction books, sip away on my hot tea and tell myself it’s all going to be ok, and just hope that after a time it will all balance itself out once again.

Until then, at least I have my little owl friend as company through the lonely and quiet nights…. hoot hoot! I think they live in the old oak tree outside of my kitchen window. He’s loud and proud. What shall I call him/her?

How about you?

Do you have chronic sleep issues with your illness? What has helped? Do you have a particular sleep schedule that helps? Do you take medication for it? Is there anything that makes it worse and we should try to avoid? Has treating your anky spon with biologics/medication helped with the sleep issues? Have you read the books mentioned above? How do you release emotions or tension? What do you do to make yourself feel safe? I would love to know in the comments below.

Why does sleep elude me? zZZ

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