Sleep/Wake Cyclers Ride for Research 2021 is on Saturday, June 12 and I will be peddling with an amazing group of people who are helping to support research for Hypersomnia. I have Idiopathic Hypersomnia (IH), a rare, chronic neurological disorder.
For those who are unfamiliar with IH, let me break it down for you.
Idiopathic = a condition that arises with no known cause
Hypersomnia = excessive daytime sleepiness
Briefly, IH is a problem within the parts of the brain that regulate sleep and wakefulness. People with IH never get refreshing sleep and they are just as tired as when they went to bed. IH causes sleep inertia, impaired cognitive function, all-day sleepiness, disorientation and physical imitations. Some days are better than others and so people with IH cannot count on knowing what tomorrow will be like. Every day everything is an effort and the hardest thing I do every day is fight to get my brain to think and stay awake.
The reason I chose to ride is because no drugs have been developed specifically for the treatment of IH, so people are treated using off-label medication to help ease the symptoms. Many of us sleepy heads spend months, even years trying to find the best medication to help alleviate the symptoms without the side effects these drugs can cause. I say best medication, because these off-label meds only help to a certain extent, because they were not developed for IH, so they are only an aid to help us through the day, because the symptoms do not cease.
I will ride to help raise awareness and money for research for hypersomnia. I have been blessed to have met wonderful people across the US and overseas who have IH and have helped me feel less alone and truly understand the unexplainable symptoms, because there are no words to truly describe how we feel. A big shout out to my supportive husband who sometimes takes me to work, picks me up early, prepares meals, shops and runs the errands so I have time rest.