I have a feeling that pretty soon I am going to run out of clever titles for these blog posts. So what has my life been like lately living with narcolepsy? Well yesterday I went about my day doing errands and whatnot, feeling pretty good, especially after some caffeine. I went to visit my grandmother (Bubbe) after a busy day and of course forgot to bring my meds with me (I take Adderall twice a day and Ritilan as needed) so when I got there, I was about ready to pass out. Now my 86 year old grandmother doesn't completely understand Narcolepsy so she kept having my do things around the house and said "You can rest when you get home". I pushed through and made it but it wasn't fun to say the least. I just about got home and could barely move. Luckily my mom has really started to understand what it is like for me to be living with Narcolepsy, grabbed my meds for me when I asked, gave me some time for it to kick in, and I was good as new.
I think my day really showed me and hopefully others, more than I even realized during the day. The biggest difference that can be for someone who is living with narcolepsy is the difference between people in your life understanding your needs and what you go through, and having little understanding.
I am lucky my mom is starting to understand because after I took my medication I was a different person. I was able to laugh and be apart of conversations, watch tv and make cookies because she took the time to help me out, give me my meds and the time I needed to get back to my normal self.
My grandmother however (and no I don't blame her - she's an 86 year old woman) didn't realize that if she had given me a 20 minute nap, it would have made all the difference. It's interesting to see how the reaction of others plays such a large role in the management and ease at which I handle this disease.
I really am lucky to have such a great mom.
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