Doctor appointment

I went to the doctors and my mom and dad talked with them.  The doctor asked how I was feeling.  I said I was good.  

We had to wait a little longer because she had other people  to talk to, so in the meantime we had our lunch.  For lunch I had a bagel I split with my mom.  I also had a cookie.  My mom had a cookie too.  My dad had a bagel too.  He also had a big cookie it was giant.

I had a book about Narcolepsy and Cataplexy that I showed my doctor.  She loved it.  

Having fun

I can have fun.  Anybody with N can have fun too.  I have fun all the time.  I play with my friends when I'm outside for recess at school. I have play dates with my friends too.  I sometimes play with my parents too.  I even go to the park.   My parents are awesome because they let me go on the playground. 

I have play dates after school.  I think your wondering how I do that without having a nap.  I go to my friends house to play or they come to my house.  Where ever I go I come home and then I go to bed early or I have a quick nap.

Having fun is easy but after you have to pay it back if you have N.  I have felt sick before that's part of paying it back.  Sometimes I'm lucky because I don't get sick and I love it when that happened.  

Narcolepsy or Cataplexy

If I could get rid of Narcolepsy or Cataplexy.  I would get rid of Cataplexy because I don't want to hurt anybody.  Yes I do want to get rid of Narcolepsy because I don't want to sleep anymore in  the afternoon.

If I could get rid of Narcolepsy it would be a dream come true.  I would not have to nap.  But if I could get rid of Cataplexy everything would be possible with laughing.  I would be able to laugh, stand up, do gymnastics, do skipping with laughing.

I would feel great if I didn't have N.
I would feel not tired.

I would feel more stable if I didn't have C.
My life would be free from falling down all the time.

Activities

I know I have N but that doesn't mean I can't do activities. I did do gymnastics. I was not so tired when I was doing gymnastics. I started gymnastics a few years ago.

 

When I was in gymnastics I felt awake.
When I was in gymnastics I felt active.
when I was in gymnastics I felt great.

Gymnastics wasn't the only thing I did. I was doing skipping the night before gymnastics. I was doing really well with not getting tired. I liked gymnastics more than skipping. I don't know why. I am doing church on Wednesdays. I'm doing one activity now and it is church. But I'm not doing gymnastics & skipping any more. It was just too much for me.

In the summer I'm going for swimming lessens.  I know how to swim.  But I don't know how to tred.  So that's what I need to learn because if I ever go in Lake Ontario to swim I'll have to know how to tred.  I don't think I will though.

Mom and Dad helping me

They aways help me when I'm sick.

Dad snuggles with me when I'm not feeling well. Mom gives me meds if I need them. My Mom and Dad are great. I love them.

Sometimes my Mom and Dad bring me Tawny when I don't feel well. Mom and Dad take care of me. What would I do without them.

When their with me I feel safe.

When their with me I feel great.

When their with me I feel good.

Tawny helps me

Tawny is my rat. Tawny cuddles with anybody.

Tawny is very cuddly. Tawny helps me when I feel sick or tired. Sometimes Tawny sleeps with me and my mom watches Tawny so she doesn't get away.

Tawny isn't the only rat. There's five rats and their all cuddly. 

Tawny makes me feel good.

Tawny makes me feel awake sometimes.

Tawny makes me feel awesome.

Tawny makes me feel not sick.

What Narcolepsy is like for me

I'm a kid.  I've had Narcolepsy with Cataplexy for three years.  I got it when I was 5.  Even though there's a lot of info on N out there it doesn't mean a lot to me.  All I know about N is what I feel.

I feel wobbly.
I feel tired.
I feel like it's hard to think.
I feel like I miss out on a lot.
I feel sick if I don't have naps.


I'm lucky that I have a mother & father who take good care of me.  They keep me safe when I'm wobbly.  They get me to take a nap when I'm tired.  They give me my medicine all day long and they stay with me when I feel sick. 
 

At school I take a nap.  Sometimes I'm so tired I can't think and my EA takes me for a walk to wake up.  I really like school but some days I'm feeling too sick to go. 

I also take a pill right after I get up from my nap.