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He collapsed, unable to get up, and slept for hours right where he'd given out. It wasn't until that evening that he was able to struggle to take a shower and collapse again - this time into bed.
So although my husband can at times force himself to keep going when all he wants to do is sleep, it isn't good for him when he does. It only intensifies his symptoms and sometimes makes his cataplexy more severe.
Although the temptation may be to push himself until he drops, it just isn't a lasting solution. The recovery is just too taxing.
Same thing happens to me. Its almost like flipping Narcolepsy the bird when you have a day where you get so much done, but of course you then get sucker punched in the gut when it takes you down for a day or two afterwards.....grrr.
ReplyDeleteI feel the same way. I have narcolepsy. Sometimes when narcolepy rears it's ugly head, I literally say out loud "F--k you, narcolepsy, I hate you". It's like I'm yelling at the symptom, because it makes me feel so incompetent as a person. I feel like it stalks me and shows itself when I least expect it. Like a stalker that I can't get rid of. I hate you narcolepsy...go pick on someone else.
ReplyDeleteYou both sound like my husband in being thrilled to have day when you feel sort of "normal" and you're able to reach some goals, but then groaning over that incessant urge... now multiplied because you pushed yourself.
ReplyDeleteIt's like you just can't win!
I am a narcoleptic (from Finland), so those word, what you wrote, are so true every day. My husband always says, that: "You have those superwoman times, when you do lots of things in a little time. After those you heal yourself with sleep." A way to look at it... :D
ReplyDeleteThat's a great description! Sometimes my husband is like Superman with all that he can do... then narcolepsy turns him back into Clark Kent. :o)
ReplyDeleteThank you. After my wife either implying or accusing me of being lazy three times since diagnosis, I did some Googling and this site came up. I have been like this since I was 12 but used massive amounts of caffeine all day long to keep me "normal." I was finally diagnosed a few months ago at the age of 33. We are still working with combinations of meds, including 500mg of Nuvigil, to keep me moving without the caffeine. And it REALLY hurts when I'm accused of being lazy, especially when I can tell that she has been feeling it for some time.
ReplyDeleteI pointed her to your blog. I hope she takes the time to read through it. I bet your blog has saved marriages!
I completely understand also. Im 33, n i hav been sleepy n exausted since i was 6. I was not diagnosed with narcolepsy until 12/2011. I almost feel as if i hav slept half my life away... And ive never really accomplished much in my life. Its so hard to hold a job, or even further my education for that matter. I barely made it thru high school, not because im uneducated, but because i could never stay awake.
ReplyDeleteAriesgeek, Karla - you're both echoing things my husband has often said! Thank you for sharing.
ReplyDelete