Can you briefly outline your narclepsy story for our newer members, many of them newly diagnosed, who are looking for support and information. You must remember when you were given your diagnosis how you wondered what lay ahead. How do you manage your day? what medication are you on? can you offer any suggestions for ways to cope? How do you stay positive?
When I was diagnosed, I already knew I had Narcolepsy. I was pretty sure I had been dealing with it for years at that point. I remember even on the car ride to the doctor's office my mom was telling me it was a waste of time because I did not have Narcolepsy, I had ADHD, this is a common misdiagnosis in kids with Narcolepsy. I could not wait to walk out of the office when I got the diagnosis and hand her the papers. I felt so vindicated at that point, but shortly after reality set in. My life was seriously going to have to change.
I do not drive. I struggle a lot with Microsleeps and sleep attacks. I also have mild cataplexy right now but it seems to be getting worse over time. I listen to my body and sleep when I get tired and I don't commit to things really. I know it pisses people off because they get frustrated with me often that I don't tell them until the last minute that I want to go, but you know what, my health and own well being is much more important than their lack of ability to understand and compensate for my condition. You have to learn to stand up for yourself and put YOU first. Narcolepsy is a selfish disease and sometimes, we have to be selfish patients.
I take Adderall 4 times a day. It is instant release 10 mg. I cannot take Xyrem due to my complex medical diagnoses and other medications I have to take. However, I know many who take Xyrem and it works great for them. One of the best things I can tell you is support. Online is great, but I have also found that having face to face support with other Narcoleptics is also amazing. I have become best friends with another girl who has Narcolepsy and a complicated health background and since her and I have connected my life has improved monumentally. I was very depressed and felt hopeless a lot of the time but now her and I make sure to keep each other in line and out of that black hole.
Another very important things is to make sure you have a good doctor and never be afraid to fire a doctor. In the world of complex medicine, you are often your only advocate. As sad as it sounds, not all doctors care. We all know this. If it doesn't feel right don't do it!
I hope this helps :)
Thanks Kristin for lots of helpful advice which could apply to many rare diseases. Odd how we can work out what is wrong with us but it takes physicians years to agree with our conclusions.
I so agree about having the support of someone who shares your experience with Narcolepsy. My condition is so rare that I am never likely to have that experience. I nearly did once when an internet friend living miles outside London said she had an appointment at the same big teaching hospital in central London that I attended and we said we would meet up nearby. That week was a bad one for me and I had to cry off and have regretted it since. I am really glad you have made such a good friend and I think you once said you have met up with other Narcoleptics in your area. I wish there were more such groups and will continue to ferret around to find any that I can.
Nel, I think you could find great help even in a Narcolepsy group. I know it is not the same as your disease, but we understand each other one in the same. When reading and responding to your posts and other correspondence with you, I often forget that you do not have Narcolepsy. You understand in many ways what we go through, just from a different perspective. Maybe it helps that like you, I suffer from other rare conditions which makes me the odd one out and I do suffer the pain and other ailments as well. Who knows? However, you do such a great job here, I really think it would help. The reason that the other Narcoleptics and I got together was because we made it happen. I normally set up the location, which often ended up being my house :) It is hard to travel out for me a lot of the time. Maybe you need to connect with some Narcoleptics locally and become their rock and set the trend ;) If you would ever like to skype, I am totally open to that. I know it is not in person, but it's closer than just typing. :) I am doing a bit better now and feeling slightly more myself again so I hope that I can get back on track again
Thank you Kristen. I am really touched. I knew of narcolepsy before I joined the group, but all I knew was that narcoleptics sleep at inappropriate times not of their choosing. Nothing else! so it has been an amazing experience and a privilege for me getting to know you all and educating myself about narcolepsy and all the conditions that go with it.
Thanks for the offer. Might get that organised one day. I do FaceTime with all my grandchildren and love the closeness that actually seeing them brings. The oldest now emails me too which is fun. Never seen so many emoticons in a row together:)
I am glad you are getting better. You are very brave and I so admire your spirit.