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Any Crohnies out there suffer with Insomnia? Put those hands up!

I can most definitely raise my hand to this. In fact, some days it gets so bad, I think it needs two hands.

Before I got sick (my god, how often does this phrase come out of my mouth of late? I’ve had so much explaining to do, to new people, to clear up awkward silences.. but more on that tomorrow) I was away at university for four years. I could easily get away with just a couple hours sleep a night before being able to start again. Most of this was self induced – through nights out, Waterpolo training, studying and epic essay all nighters, and of course the Dissertation hell too – but as a person, it was just the normal for me.

Once I got proper Crohns symptoms – you know the ones that keep you awake all night in the bathroom, slowly drifting off to sleep on the loo, ugh – I was so cranky all the time. Mostly because I got about 4 hours of sleep a night. I would get into bed at about 10pm, exhausted from being awake during the day, and get up about 6 times a night. It was tiring. I was so weak and frustrated. Nothing was working. Sleep was something I dreamt about. It was just so damn elusive. And of course, through the drugs they gave me in hospital, I slept on and off for days, not really being aware of the dates and days blending into each other, it really messed me about.

Prednisolone. We’ve all been there right? On some sort of steroid to keep the inflammation down, hoping to not be on it too long and that the side effects aren’t outweigh by the benefits. I had Pred for the first three months of my diagnosis, and at its highest, a 50mg daily dose. Some days, Pred gave me a lovely nap in the mid afternoon; I would feel my eyes going watching tv, so I’d trundle upstairs to my bed and I was out of it, Zzzzzz for the count. Once I started Humira and they began weening me off evil Pred, everything changed. Humira gave me the energy I needed to get through consecutive days without the need for ‘extra sleep’. However, the steroid withdrawal really hit me hard. Unlike being in the Gastro ward, I was on my own here. I just had to ride out the storm right?

I did. Sort of. It wasn’t without its problems. As I finished my Pred cycle, I was a couple days away from going back to work. Great! I thought, no more meds to take during the day, no one would even know I was sick. No such luck. I was so damn perky from the Humira, I would do so much I pushed myself too far one day and ended up on the floor in tears. It felt like crashing. I knew it was my body craving the steroids it was not getting. I lied and said it was because I was just tired – I was, don’t get me wrong – but that never fades. I constantly feel tired. Always yawning.

Nowadays. Well, not much has changed. My steroid withdrawal lasted for 6 weeks. I was working about a 20-25hr week in the shop, along with my bi weekly Humira shots. I was doing okay. Just okay. I wasn’t great, but I wasn’t in pain either. I could do my job pretty well at this point and I started to talk more about what I was going through with a selective amount of people. Those who would care, who did care about me, and wanted to see that I was fit and healthy to be at work. The insomnia really kicked in on my second week of no steroids. The last week of January. I was back doing weekends in the shop. I was already so tired after a half day shift on a Friday, how I would managed most of Saturday and all of Sunday was beyond me. I sat in bed at night willing myself to shut my eyes and get some sleep. Some nights it worked, and I would get a couple hours sleep, but most nights I was awake again at 4am, getting tiny drifts until about 7am and everyone else in the house woke up. It was horrible. Being tired and trying to maintain a life was a struggle. It is a struggle.

I remember one Wednesday morning, 7.30am, I’m walking downstairs to the kitchen and my dad calls my name and asks if I’m okay. I just burst into tears. I told him about the fact that I hadn’t slept in three days for more than 4 hrs. I was exhausted. He encouraged me to stay home that day and sleep. Instead, I went to work and solider on. I’ve had many days since, very similar, where I have to push through the feeling of nodding off on the counter and just do my shift.

My insomnia is at its worst when I’m coming to the end of my Humira cycle. Which I find highly amusing or ironic; depending on my mood. That I get the most tired when the least amount of Humira is running around my system, does my body decide that it won’t sleep, it’ll just stare into space. That it’ll want me to see all of the night some times. It is horribly frustrating.

I’m not sure if my insomnia is just part and parcel of my Crohns or it is warning of things beginning to flag. That my medication just isn’t cutting it anymore. Before, I just used to think it was the withdrawal. But two months on, it can’t be. Can it? This uncertainty is just like waiting for that diagnosis. You try and rack your brain for pieces of information, bits of a puzzle you can fit together to make something realise to cling too, but it is far too complicated and mind boggling, all you end up doing is making your mind all fuzzy.

I really wish I could break the cycle. I have another day off work before returning on Tuesday to full day shifts. My Humira isn’t for another three days. How will I survive until then?