I haven’t slept properly for over 2 years. I know some of you with children are probably thinking ‘join the club!’ but it’s not entirely the same.
The body’s natural or circadian rhythm starts to boot up at about 3am ish, getting everything ready for when you need to get up in the morning. Part of that is cortisol production, which I don’t make. Cortisol is the body’s stress hormone, and you need it to survive. So instead of staying asleep and letting it do its thing in the background, my body wakes me up thinking that there’s something seriously wrong. Then it doesn’t always let me go back to sleep. Which is a problem, since getting sufficienct sleep and rest is really important for everyone, but especially with chronic illness. This happens to lots of patients with adrenal insufficiency. In other countries, endocrinologists recommend taking doses of their cortisol replacement at 3am to counteract this, but this doesn’t seem to be typical in the U.K.
I used to wake up feeling like I’d been shocked and feeling like I was about to be sick. I’d usually have sweated through my clothes and feel really dizzy and shaking. It’s not pleasant waking up like that, but it happened nearly every night. Then it was usually 4 or 5am before I could go back to sleep, if I went back to sleep. Some days I’d be awake until I went to bed again the next night. It doesn’t matter what time of night I go to bed, it’s always the same time.
The good news for me is that my baseline was increased again a couple of weeks ago, so it’s now 15mg/10mg/5mg. This means that even though I’m still taking my doses in daytime hours, I’m not running on fumes by the time I get to 3am, there’s still a tiny bit of fuel left in the tank. I still wake up every night around 3am (it’s usually 2.41am to be exact), but I’m not waking up feeling quite so terrible and I can quite often go back to sleep sooner. I’m still not sleeping through the night and I’m still really tired, but it’s a positive change. 🙂