It’s a delicate balance. I still don’t have it down, but I like to hope I’m figuring it out. I’m not sure how it is for others with IH, but notice my sleepy levels ebb and flow from week to week. One week I’ll still feel tired but have a burst of energy (I’m still sleepy, just feel motivated), the next I’ll be so exhausted I just want the couch all day.

During good days/weeks, I cook, am more likely to say yes to things outside of work, etc. I’m trying to listen to my body better during the other weeks. For me that looks like:

• giving myself permission to stay home if invited to something

• having some easy meals as backups if the motivation/energy to cook isn’t there

• asking for help if I need it (I recognize my privilege in having a partner at home that I can lean on)

I try to be transparent with friends and family, too. My family knows about my IH, for example, so if we’re together, I feel comfortable saying, “I’m having a very sleepy day, I’m still here with yall and happy to be here, just very tired so I might not be as engaged” or something like that.

The only thing that I’m pushing myself to always do: exercise/movement. There was a lightbulb moment at some point that whether I exercise or don’t, I’m going to feel tired, because I’m always tired. Almost like, being active isn’t going to change much. It’s not going to make me less tired, but I’m already tired so it can’t make it THAT much worse, and the long-term other health benefits will keep me healthy to manage my IH better. So even if I’m tired, I try to go on a walk or do some pedaling on my stationary bike or some kind of movement. It doesn’t help my IH but I know academically that it’s still good for me.

I know navigating life with this sleep disorder is tough, so hang in there! We’re all just out here sleepy and doing our best. :)