Narcolepsy

I feel like I just can’t wake up. I’ve been sleeping for 3-4 days on and off and it isn’t helping. My moods are stable, so I’m sure this isn’t bipolar depression. I actually feel pretty happy.

When it gets like this, my anxiety ramps up. Not because I’m sad about things, but because I’m anxious about my sleep. My dr tells me to take 2-3 naps per day. But at times like this, I’m sure I’d take 5 if the daytime hours allowed it. I feel like I could sleep forever.

I’ve tried everything. Coffee, soda, tea, meditation, etc. So far, those have had minimal to no effect. It feels like I’m being pulled under, underneath a wave of covers, or water. I can’t breathe and I’m drowning in tiredness. This feeling is so uncomfortable.

My narcolepsy comes with excessive daytime sleepiness, sudden sleep attacks, and prolonged lethargy. No matter what I do, these symptoms are ever present. These days, my narcolepsy isn’t well controlled. It reminds me of when I was in high school and college. My mom used to prevent me from going to my room before 8pm. Little did we know, she was working on my sleep hygiene. This still didn’t help. Much like my current situation. Regardless of what I do at night, I wake up feeling ambushed and exhausted.

I’m working on sleeping with ambient noise to see if that helps. Too much light keeps me awake and too much noise makes me agitated. It’s a balancing act to get the right environment for my rest. This is an extreme sport almost. Only, I’m not enjoying participating.

Narcolepsy robs me of so much. My energy is sapped, my mind is fogged, and my limbs are heavy. It’s a struggle for me to even take a walk around the block. If I’m not careful, I can slip into a mixed state or even psychotic depression because of my sleep issues. This is a major predicament.

One thing that does help is communication with my support system and letting people know when I’m overly tired. I may ask for nutritional advice or even just company so that I don’t sleep all day. Occasionally I’ll have to ask people to help me get sleep, but that’s when the urge to rest is overwhelming. Lately, I’ve had to do this. And it makes me sad.

I never wonder why this happened to me, but I do want to know how to address it. I feel like I’m missing out on life by sleeping this much. I’m missing my kids, and my friends and family too.

Another thing that may work is getting a nutritionist or a registered dietitian for my eating disorders. That way, I’m supporting my body with wellness and not illness.

I feel much better sitting up. But these days I’m horizontal more than vertical. I wish, per my body, to sleep 24/7. But I know that doesn’t make things better. The last few days, I’ve forced myself to go outside. I made myself walk to the end of the street and back. It didn’t stop the narcolepsy attacks but I did feel more focused and alert. At least for a short period of time.

In college, I didn’t have the words to tell people I was struggling. So I suffered and lost many opportunities. Now I’m glad I can tell people how I feel. And I’m grateful that they understand my issues. No longer do I feel ostracized or embarrassed. I know that if I need it, people are there to help me through this. It’s been a long road but I’m happy to be moving forward. And I’m happy to be getting the assistance I need with this challenging situation.

Allah is merciful. Time can make this better. And what a ride it’s been.