So I’ve been dealing with a lot and I realize it’s been forever since I’ve been on here. I’ve mostly been on Facebook, though even there I’ve been less active than before.
I kind of just need someplace to come clean without feeling like I’m just complaining our taking over someone’s feed.
A lot of my friends know I’ve been having issues with sleep lately. Namely, too much of it. And if my reposts on facebook didn’t give any clues, I’ve officially been diagnosed with idiopathic hypersomnia. In simple terms, I’m always tired, I sleep a lot, and doctors don’t really know why. That’s the basic version, but to be more technical, it means my sleep study confirms I fall asleep in less than 8 minutes (5 minutes is my exact average), but I don’t have sleep onset REM (as in narcolepsy). Naps are long (usually hours) and not very refreshing, and without medication and persistent external stimulation to wake me up I sleep in excess of 10 hours on average (15 is my personal average, sometimes longer). Regardless of sleep, I’m still chronically tired and can fall asleep in virtually any place or situation.
I’m finding ways to manage (supplements, stimulants, strict sleep schedules and routines, light, sound and temperature therapy, change of work schedule, diet, pain therapy [for bedsores and carpal tunnel], idealized sleep and wake settings, and a pretty routine use of multiple alarms, including a sonic bomb alarm clock), but as of yet, there’s no cure and it’s fairly rare with little information available. Medical treatment pretty much consists of throwing out treatment ideas and seeing what sticks and for how long. I’m scheduled to start seeing a neurologist in January to try and see if we can rule out other possible causes (chemical/hormone/nutrient imbalance, potential relation to my previous brain injury, other possible neurological conditions). But as it stands, I’m pretty much textbook idiopathic hypersomnia with long sleep and hypnopompic hallucinations.
I’ve been dealing with it for a while now, for a long time we thought it as medication induced and I hopped around different medications for my anxiety/depression, the meds I’m on now work well and my therapist has eliminated depression as a cause. But sleep just keeps coming back.
I’ve pretty much gone through every stage of grief, I’m kind of at an acceptance stage right now, I’m managing to get used to having limitations, and the most stress honestly comes from things people say out of ignorance, but I’m learning to deal with that too. At this point I don’t need people feeling sorry for me, just understanding. I can’t duo as much as I used to, I can’t really get up the same amount of energy as I used to, I’m gonna need some assistance when it comes to social events. I’m willing to work, I want to have fun, and I still love and want to keep contact with all of my friends, but I need more breaks, and some days are better than others. If I’m yawning during a conversation, zoning out, or need to have you repeat something, it’s not that I don’t care about what you’re saying, I’m just tired. If I say I can’t come at x time because I’m going to need sleep or I need to excuse myself because it’s getting late/can’t sleep over, it’s not that I’m forcing myself to hang out with you or not enjoying myself, its just that I want to be able to do so again, so I’ve got to respect my limitations and stick to my schedule and treatments so that I’ll have energy tomorrow.
I know it might be frustrating, and it’s just as frustrating for me. Having a day off with no plans only to end up sleeping it away, or finally getting to do something I enjoy and have fun hanging out with friends only to have to cut it short because brain fog is making it impossible too keep up with the conversation, and fatigue is setting in and I need to sit down while everyone else is up and energetically having a good time. I’ve learned to enjoy watching, and it’s not that I’m trying to be alone, I just need a break. I’d enjoy company and conversation if you feel like joining me, but you don’t have to feel obligated, I enjoy watching friends have a good time, and I still like doing fun, active things, I just can’t keep up as long as I used to. And I might need help waking up in the morning.
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