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About MyNarcolepsyTeam
Real members of MyNarcolepsyTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

I Just Have To Let You Guys Knows This'

I Just Have To Let You Guys Knows This'

I am so sorry for all of us with Narcolepsy plus a lot of us come with many other health issues. I think we have gone through a lot and if only the ones that don't get it would only go a day in our shoes. My friends here I would like to say I am proud of you getting by and doing what you have to to complete your days. This is our life and we have to except how difficult some days can be. Do you know we don't no how strong we are until we have to be. So fell good inside because I know you guys… read more

A MyNarcolepsyTeam Member said:

I am thankful that after being diagnosed with NwC, I got educated and made changes to be able to function. Thankfully, I'm a fighter and I am no stranger to God's love ❤️ for us all. After many prayers and going against popular family opinion, LOL, I changed careers to an active one where I have to keep moving and it works.
It helps that I have patients depending on me to show up. I fight to wake up every morning and struggle to stay awake long enough to eat dinner at night. I thought I was a miracle then I met an RN who also has NwC. Her mindset is like mine.
Some days are super hard and I'm not sure if I can continue.
Making adjustments as needed in what I eat and when I eat, how I sleep, etc. and having gratitude towards God for my abilities is a HUGE factor.
I am thankful to kind people on here with common struggles who reach out and respond with empathy. You're all a blessing to me.
Edit: I had to add that I do take Modafinil 100 mg 1xday as soon as I can wake up enough to do it. More than 100mg makes me too tired the next day.

edited, originally posted over 1 year ago
A MyNarcolepsyTeam Member said:

I am truly thankful for God keeping me together when it has been so easy to give up and I am thankful for such a great place we have to support each other here online and the Narcolepsy team and for this I am truly thankful.

posted almost 2 years ago
A MyNarcolepsyTeam Member said:

I was 26 or 27 when I came down with NwC This was in 1967. Little was known and there was little information obtainable by the individual. I am thankful; for the little information, because it forced me to do what ever it took to make it through the day. As new things popped up I would figure it out. I had 3 small kids, and my wife didn't drive. So I worked swing shift so I was able to drive 72 miles to the Dr. Don't get me wrong, I had my time when I wondered why me? I wasn't going to loose my kids, or go on welfare. So I had to do it. If I had started out with NwC at a young age, and had the internet to go to, I don't think I would have done as well

posted over 1 year ago
A MyNarcolepsyTeam Member said:

I just found your post. I really enjoy reading it. I've lived a life of complications in my physical, mental, and emotional life. We are amazingly strong and you said it so wonderfully. Thank you.

posted almost 2 years ago
A MyNarcolepsyTeam Member said:

I loved this comment. My mom used to say that to me. Your right the things we need to do will be there tomorrow Just take care of yourselves and it will be a better day.

posted almost 2 years ago
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