The kids are asleep – fast asleep. I am not… but I will be soon. Today was a good day, today I focused on the kids and left the garage stuffed with unpacked boxes. Today I relaxed a little – after a few weeks of stressing over this, that and the other thing. Stress is not good for the body. Stress is not good for my narcolepsy, it is unfortunately my “trigger”.
I have noticed over the past week that my narcolepsy has been getting more pronounced, not uncontrollable, just THERE – lingering in the back ground. Normally my narcolepsy symptoms are kept at bay while I am pregnant – one of the biggest bonuses of pregnancy – after getting an absolutely adorable baby – of course!
Lately I have been SLEEPY, not tired, but on the verge of sleep most of the day. To me “tired” is just an overall feeling of fatigue, but “sleepy” is simply constantly teetering on the verge of falling asleep.
Some days I forget that I have narcolepsy, a chronic disorder with no cure. These days I am constantly reminded of my narcolepsy and it makes me feel vulnerable and frail – and I hate that. I wish I didn’t feel so weak, I wish I had more energy to do all the things I want to do – all the things I feel like I NEED to do. When my narcolepsy is acting up (as I call it), I am forced to keep a lean social calendar. I am unable to schedule more than one event, meeting or appointment per day – otherwise I am rendered completely useless towards midday.
I should not have to live like that – I shouldn’t have to feel like I am unable to keep up with my kids and their never-ended source of energy. When I feel narcoleptic I withdraw from the outside world because, let’s face it – I am the only narcoleptic you know. So explaining to friends that I am tired, reminding them of my “funny” diagnosis is tiring (pun intended) – always having to chuckle over my sleep disorder gets harder and harder.
Believe it or not, sleep is not good when your narcolepsy is in full force. I have severe nightmares and very vivid dreams. My sleep isn’t restful and many times I feel like I have not even slept all night because I remember so many details from my dreams. I hear songs all night long – like a bad record stuck in one groove – or a song left on repeat. I dream of losing loved ones, I many times have very violent dreams, so I wake up scared of falling back asleep.
Narcolepsy forces me to slow my pace. Narcolepsy robs me of a comfortable sleep. It makes me feel different, strange – like an odd ball. I don’t fit in social settings because I constantly tune into how I feel, so I can try to deflect and avoid an embarrassing sleep attack. I turn my head when my eyes get “shaky” and close involuntarily. I desperately try to pinch my hand and arms when my head feels fuzzy. I have to watch for automatic behavior and Lord knows I cannot post things I have written while sleepy – many times I will have no recollection of what I wrote while under the influence of narcolepsy.
So tonight I am going to bed to cuddle with my boys and pray for a restful and restorative sleep.
I am sorry this post lacked humor and cute stories about our kids, but sometimes life with narcolepsy lacks those things. Sometimes staying awake is my greatest accomplishment. Today I managed to be present for my kids. I forced the mental fog away and I was there with and for them – I can’t ask for anything else.
Check out my articles related to sleep issues in babies and children: “Get Your Toddler to Sleep Like a Baby”, “Help Your Baby Sleep Longer Without Tears”, “Why I Don’t Want my Baby Sleeping Through the Night”
Narcolepsy related stories: “Diagnosis: Narcolepsy”