So it’s been awhile since I shared, exactly three months actually! I really should write more often, sorry! My relationship is still getting better with the ninja and even more lately since he started Xyrem with his Vyvanse. I’ve noticed that he is much more animated which is something that we both have not seen out of him in awhile. Last week I asked him to remember to do something tomorrow evening and usually I would have to remind him a 100 times but not this time, I asked him the one time and he remembered the next evening, heck I had even forgot that I had asked him the night before! I better watch out once he’s on his normal effective dose! Another thing that blew me away was on Saturday he said to me I love you, he hasn’t said that in a very long time, I was shocked to hear it from him. We still fight occasionally but not like he use to. I try not to fight with him because it doesn’t get us anywhere and he usually has a cataplexy attack from it. He’s slowly coming out of his shell and I’m excited for what the future holds!
I also wanted to share two things tonight, first is a patient-focused narcolepsy survey, this is an awesome opportunity for PWNs around the world and their loved ones to share their unique experiences with narcolepsy with the FDA! So please take 15-20 minutes to help educate FDA about what narcolepsy REALLY is! Survery: https://www.surveymonkey.com/s/unitenarcolepsy
And the final thing that I would like to share is a cool Facebook group that the ninja and I have joined. It’s called People With Narcolepsy Pen Pals. The group was made for people who have Narcolepsy, but also welcomes loved ones of people who suffer from Narcolepsy. You have the opportunity to pen pal with people all over the world, PWN can pen-pal with each other or pen-pal with a non-PWN to help educate them. Also spouses/partners of PWN can pen-pal with each other. I wrote my first letter to a fellow spouse this past weekend and am excited to converse with her. I also messaged with another spouse in another county and I could really relate to what she was saying, it made me feel like I wasn’t alone. The ninja is also going to be writing with some fellow PWNs and I think it will be great for him as well to talk to some who is going through the same thing. Check it out!