It's hard saying no to things because of Narcolepsy...
This evening a friend asked me to go shopping with them tomorrow. Of course I wanted to hang out with them and go shopping, so I said 'yes'! Then after thinking about it, I realized that I would have to restructure my evening and the next two days in order to go. Because of the amount of rest I need before and after trips like this. I then had to text her back and say 'no', not because I was too busy, but because I would be too busy recovering to get anything done the next two days. And I have stuff I need to get done! I really wanted to hang out with them though. It's so frustrating. Can anyone relate?
Oh totally omg. I get invited constantly to things. And I can never seem to fit it in. It's just so draining to do stuff. So much sleep needed! 😀 but I'm on Adderall now, and it's like 50% better for me now. I'm content
It really is draining to do any kind of activity with narcolepsy... I always feel like I am either overextending myself or disappointing people - and most of the time, it's both! I am so glad to hear that you have a treatment plan that helps your symptoms! Hey, 50% better is better than no improvement, that's for sure. Thanks for sharing with our community. I wrote a related article about blaming narcolepsy not the people, if you'd like to read it you can find it here: https://narcolepsy.sleep-disorders.net/living/social-stigma-blame Warmest regards, Tatiana (narcolepsy.sleep-disorders.net Team Member)
Hey hun! Yes I can definitely relate, especially when it comes to anything with my niece. I loveee babysitting her and doing stuff with her but most of the time I can't do it for too long and there will be days when I just can't at all!
I feel so bad sometimes having to cut things short or cancel plans but I've learned the hard way that in the long run...it will be better for us both if I respect my body and my condition. It's just the way it is, unfortunately.
Hope you're taking care of yourself! Iris xxxThanks for sharing! I've always felt guilty about not getting to spent enough time with my nieces and nephews, but on top of college and narcolepsy I didn't have much to give them... I live far away from them now and it is hard. But I can remind myself that I was doing the right thing for me at the time and trust that what I gave of myself was enough, simply because it was all I had. I am still learning this lesson though! I pushed myself too hard this fall and ended up getting shingles... it has been over six weeks now and I am still recovering! My theme for 2023? "It can wait!" Warmest regards, Tatiana (narcolepsy.sleep-disorders.net Team Member) Yes! Love that theme! Might use it myself! lol. Take care hun! Iris xxxx
Definitely relatable. I have trouble with making plans a few days/weeks in advanced, but the day of I am just too tired to get off the couch. There have been many events I have missed because I couldn't get myself to go do whatever I had planned. It can be very frustrating.
Xoxo/Zzz, Gabrielle
