I am excited to present the first post in my “Advice from a Fellow Narcoleptic” series, where readers can hear the advice and stories of other Narcoleptics.
Today’s advice is from a Narcoleptic with the TAS name 'RedbAdGE.’ Some of you might recognize his name from the Narcolepsy forum, as he is a frequent poster.
I hope that some of you will find his advice helpful, as I did. It is amazing what we can learn from each other.
And with that, here is RedbAdGE’s advice to all of you:
Ellie,
Here is a small contribution to the guest advice you are compiling for the blog. I hope you find some of this useful.
1. Perspective: We must accept the fact that everyone on this planet has their own set of struggles. Some mental, some physical, some both. Some obvious to any stranger, others hidden deep within. Some are self-aware, others not. Some struggles come with a label, others not. To feel sorry for yourself is to lose the battle and to lose control of your life. Accept the gift of being self aware in your battle with Narcolepsy. You know your enemy. Do not let it control your life. Embrace the many joys in life. Understand the challenges and savor the victories, no matter how small. Be thankful every morning for these gifts.
2. Narcolepsy with Children: I believe our children are not only a blessing, but can serve as a means to battle with our enemy known as Narcolepsy. The love we have for them is like Xyrem for the soul. We should completely embrace the waking moments we have with our children to the fullest and we will make more beautiful memories with our children than most parents ever do. My children give me the will to fight. Spend as much time with them as you can. With toddlers, sometimes that means letting them crawl all over you when the tank is on empty. I am a father of two toddlers, and I will often lay down on the floor and tell them I am a boat, or a bed, or an airplane. They will laugh and climb all over me while I am lying on my back and fast asleep. Yes I can sleep through that. I am also very willing to volunteer to be the one to lay down with them at night if they get scared. This way I am still sort of bonding while in dream land. Most of all, my children are the biggest motivating factor for me to stay on my medication and focus on any and all means to enjoy life with them to the fullest.
3. Sleep Paralysis: At one point in my life I was experiencing sleep paralysis every night. I was lucky to have my wife there to help me with this. I would try my best to sleep with one hand on her arm. I would focus on trying to move a finger to tap her arm or dig my nail into her arm if necessary. She knew that this meant I was paralyzed and she would shake me until I regained movement. Many people will say that it is best to just relax and enjoy it when sleep paralysis sets in. If that works for you then I suggest you continue as it is the best solution. For some of us that is not an option as the mind tends to play tricks on you that are not easy to ignore.
4. Problematic Habits: Look for any habits you may have picked up as a means to stay awake when the daytime sleepiness sets in. For example, my ankles are in bad shape today. It was only recently that I realized this comes from all the years of twisting my feet and ankles in order to keep myself awake with the pain while not drawing attention to myself. This is something I began to do subconsciously as an automatic mechanism to combat the fatigue when I was in a classroom and working a desk job. I imagine for others it could be anything from repetitive finger popping, rubbing your eyes too hard, pulling hair, scratching, biting your mouth, etc.
- 'RedbAdGE’
Thank you so much for your advice, 'RedbAdGE!’ I really appreciate it, and I’m sure that my readers do too.
I especially liked the part about how you spend time with your kids when you are really tired. It’s very creative, and I don’t think I would have thought of it myself.
Anyone else care to share their comments, thoughts or questions?
Posts
2 comments:
Oh my gosh...I had no idea my silly fidgeting habits could be related to N! I'm not sure it's all related to N or just because I am am Type A, but I started cracking my knuckles in 6th grade...now I crack toes, ankles, shoulders, etc. I also have diagnosed myself with trichotillomania, which is pulling my hair out one strand at a time. It's not so bad anymore. It was much worse in high school. I roll onto my ankles frequently throughout the day, but I attributed that to flat feet. I bite my nails. I rub my eyes too hard as well...which is why I'm scared to get lasik eye surgery. lol. It's definitely something new for me to think about. Thanks for sharing!
I think I definitely rub my eyes more than normal people. When I tried to wear contacts, this became extremely noticeable - I was always resisting the urge to rub my eyes. Other than that, I know I do things when I'm extremely overtired and having trouble staying awake but I don't do these all the time: I massage my neck and other parts of my body, lol. I play with my hair. I rest my head on my hands in a strange way (when i do it, my husband can tell that I'm "out of it").
Post a Comment