by - September 27, 2017

It's 3:02am and I'm wide awake but I am oh so exhausted.

This is normal for me.

I'll probably be awake until 5am and fall asleep for an hour or two before needing the toilet again, depending on how well I am. I'll then get up and start getting ready for work which can take me up to two hours because my energy levels are so depleted. I can no longer shower in the mornings as it zaps everything from me and I need a nap after - and that's having a sit-down shower and not even washing my hair!

In this post I'll touch on my bowel disease but I really wanna try and keep this focused on the insomnia part, as my IBD journey is much more than this and I'm in a relatively positive space with it right now and I'd like to stay there for a day or two at least.

What is insomnia?
Now, I'm sure most people reading this will know what insomnia is, but unless you've truly experienced it as a chronic condition, you probably won't get it, much like insomnia's long-lost cousin; fatigue, the two are a deadly combination that limits what I can do daily.

Insomnia is simply the inability to sleep - whether that's getting to sleep, or staying asleep. It can occur at any time and isn't limited to dick o'clock (now). I say simply, it's not always simple. Many people experience short bouts of insomnia - like being excited to go on holiday or nervous about an interview or operation but for a lot of people, insomnia is a chronic issue which can last years.

Why do I have insomnia?
Insomnia has different causes and sometimes I imagine they're not obvious and I feel for those that can't diagnose the issue - you've nothing to try and remedy. Whenever I've experienced insomnia I've always been able to link it to a reason. When I suffered short bouts in my teens it was mostly related to anxiety. I've always been able to at least pinpoint WHY I couldn't sleep, even if I couldn't do anything about it.

For the last 18 months, it's been illness and medication related. I haven't slept properly for 18 months. To my knowledge, I first got ill in February 2016. It started with a swollen ankle (which I still have no idea how it occurred) and I also had an upset stomach - I presumed I probably twisted my ankle and didn't remember and that I just had a tummy bug. I could not have been more wrong.

Fast forward 6 months and I've had no appetite, been getting up for the loo every hour or two and lost 6 stone. My GP had been telling me it is likely anxiety related and IBS and I should avoid stress and food triggers - easy enough as I wasn't fucking eating. A very close school friend passed away and I realised that this couldn't "just be anxiety and IBS", there HAD to be more to it and I needed help. On top of my health concerns and my friend passing, I'd moved out of my family home and was in the middle of changing jobs. My anxiety and depression were at their worst and for the first time, I accepted help in the form of sertraline.

This did NOT help my insomnia but after a while really helped with my anxiety, panic attacks and mild depression. It allowed me to research more what could be wrong with me and for me to revisit my GP to ask for more help. I didn't receive this - It took me SCREAMING in her office about reporting her for malpractice for her to refer me to a gastroenterologist.

I still have not slept. I'm napping twice daily at this point.

Let's skip forward again to February 2017 - my GI consultant tells me I have Crohn's and we will try and treat this with a steroid called prednisolone. I was prescribed a foam which I was to squirt into my butthole so it was topical and I wouldn't get any nasty steroid effects. I couldn't get on with it so we switched to Prednisolone tablets in March. I was told to take them when I get up as they could cause sleeping problems, so I take them around 7am after breakfast.

(Forgive me, I’ve actually forgot where I was even going with this.)

How can I remedy my insomnia?
I’m still tired, I’ve still not slept and it’s not easing up. Since my diagnosis of Crohn's in February 2017, I’ve also been diagnosed iron anemic, which explains my fatigue a bit more, though luckily I don’t have a b12 deficiency (I do take b12 regularly so that might be why).

I’ve spoken to a really awesome GP and my GI but sadly, because it’s a physical need to get up and go to the toilet they can’t really do anything for me - sleeping tablets won’t work and I don’t wanna be messing myself if I can’t get up. I’ve tried natural aids like lavender and chamomile tea (which also eases my stomach sometimes), but nothing really helps. Listening to thunder storm, rain of campfire sounds helps soothe and ease me when I’m struggling to get to sleep and it’s making me anxious. 

I’ll probably come back and re-visit this post as I’ve spent like 3 nights trying to write it, but it feels incomplete - that’ll be the brain fog, fatigue and self doubt.

Does anyone else have insomnia? Have you found anything that helps?

*shout and and thanks to Emily Long Photography for allowing me to use her images for this post. 

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