I recently had an idea for an "unofficial survey of Narcolepsy symptoms". From what I've read it affects us in some similar ways (the way Narcolepsy is diagnosed) - but the presentation and daily life can be very different in each one of us.
So I thought a few short questions might help me get a handle on what I and we experience day by day.
Recently a friend called (this was about 4pm) and when I told them I was headed down to sleep for a bit they said "well, just stay up and try to sleep normal times". I tried to explain that does not work for me and when I need to sleep, I must sleep. No matter what I try to shift to a normal "sleep schedule" (like the rest of the world) it does not work for me.When I need to sleep, I sleep period, sorry that is what I deal with. At times, sitting in church just pass out.
Later thinking it over when I woke up I realized "telling a Narcoleptic to "just stay up, is like telling someone "just hold your breath for the next 6 hours".
Even if I could stay up with my mind frosted, burned out, fatigued I could go to bed at 11pm and sleep for 30 minutes or 4 hours. That the dreams and other stuff I deal with are not predictable. That a person can have narcolepsy and insomnia. There is nothing I would like better than 8 hours of predictable sleep, no vivid nightmares, hallucinations, brain fog, fatigue, cognitive and memory failures and a day by day predictable life. But that is not my reality.
So I'll try to keep it to 12 yes or no questions to get a rough idea if there is a common thread among us.
1. Do you experience anxiety related to your unpredictable life?
2. At times are you depressed because of your unpredictable life?
3. Are you aware of the changes of "levels of Fatigue" day by day?
4. Are you aware of the "levels of cognitive change" through the day, hour or by the whole day?
5. Are you aware of levels of memory change through the day, by the hour or by the whole day?
6. Do you fully know and now understand how best to try to navigate YOUR LIFE day by day for you, as close to what the world calls normal?
7. Do you also deal with insomnia at times and or often?
8. Are you able to explain to people and be understood how the condition affects you?
9. Have you been pressured by a doctor to just take "medication" to treat One symptom?
10. Have you accepted your diagnosis, tried to make the best of it and adjust the best you can, regardless of the challenges and other peoples thoughts?
11. Have you tried any drugs and had negative effects or created new problems for you to deal with?
12. Have you decided to not use or add more drugs than you are already taking.
My closing thought is until you live this narcoleptic life you know almost nothing about it, and certainly more than any physician that I've met.
I think it's time to stand up and not be counted and treated by ignorance and misconceptions regardless from who they come from.
PS: Sorry, I have a little irritation recently provoked by a LTD company's questions.
How is you carpel tunnel doing, Anxiety, have you had any new sleep studies (NO, I had 5 and there was not one doctor brave enough to diagnosis the obvious.).
So it was my turn to start asking LTD the questions. How would it be if an hour from now you didn't know how or at what level you would function? Their response not good. How would it be if your friends asked you to come over next Thursday pm for coffee and you had to tell them I have no Idea if I could even drive or come over.? That would be very difficult...
The kicker was "how is my bilateral carpel tunnel doing? (My thought - Are you insane? - I didn't say that to them but was thinking it). Live my life and you would not ask me stupid questions like that. No, not good, CTS is not good and next I'll be wearing splints 22 hrs a day...Been wearing them every time I sleep for over a year now, with CPAP machine and with sleep mask. And wondering will I have a 2, 4 or 6 hour night and how bad will the dreams be?
Sorry for any mistakes, or questions and thoughts I've left out. Please feel free to edit and add to this because my brain is fading now but I've been thinking about this for a number of days and wanted to just get something posted. There is no "perfect time" for me...any more. I just want to find a cure for this.
PS: I you don't want to respond publicly please send me a message and I'll try to collate the responses I get and post them here.