In my speed of late to the game and ramble through the brambles – don't let that scare you but, here goes. Sharing parts of my reality for the good of fundraising for research…
First-Ever Hypersomnia Foundation - Sleep/Wake Cyclers Ride for Research 2021
Living with hypersomnia is like trying to ride a bicycle with flat tires. You can move, but not very far. Or very fast. Going even a short distance takes enormous effort.
For those with idiopathic hypersomnia, narcolepsy without cataplexy, and Kleine-Levin Syndrome, we still don't know what causes our sleepiness and brain fog. The brain is a crazy complex place. The answers will be hard to find. But we're looking. All of your donations to the Sleep/Wake Cyclers team will go to fund global research on central hypersomnias, with an emphasis on finding treatments for those who do not respond to currently available medications. The only good place for the word "idiopathic" is in the rear view mirror. Thank you for supporting our team - let's ride! ~Hypersomnia Foundation
(...and in the bike scenario, some days, intermittently most days, this person here living with hypersomnia feels like I am riding with flat tires. ~Beth)
I have IH and these things I know... ~~~~~~~~~~~~~~~~~~~~~~~~~~
IH sucks (Idiopathic Hypersomnia is a primary hypersomnia of central origin. It is an invisible, chronic, and complex neurological sleep disorder that is often misunderstood. You can learn more here: https://www.hypersomniafoundation.org/)
Research matters and so, I ride for research but I need your help.
The reality is that the research engine is fueled by money and so, I ask the awkward but wonderful possibilities question. Would you consider making a donation and help grow my team member goal? Your donation would be most appreciated and could help fuel the engine of much-needed global research on central hypersomnias.
Contributing is easy. Just click the donate button on my campaign page and follow through. No per mile calculations are required. The amount you donate is the amount that benefits research. Minimum donation is set up for $10 US minimum but after that, no amount is too large or small. Fivers ($5.00 bills US), Ten spots ($10.00 bills US), Jacksons ($20.00 bills US), Franklins ($50 bills US), or a variety of Benjamins (money) are welcome because fundraising is all-inclusive. Whether large or mall or somewhere in between, every donation counts and the money all helps to further research funding.
As you decide your best-fit participation level and whether or not it’s in your current budget or in your philanthropic heart to throw money into the cause, I am grateful for any consideration. I am also hopeful that in the spirit of sharing is caring, that you might share the Sleep/Wake Cyclers Ride for Research 2021 fundraising opportunity with others because, while IH sucks and research matters, awareness matters too. My sincere thanks.
If you’re up for it, My Personal Story…
If you’re not, skip to Know This Thing
IH revealed to me that in function, it is more an awake disorder masquerading as a sleep disorder. I sleep just fine but no amount of sleep fixes me. No matter how much I sleep, my brain feels painfully broken from lack of sleep (but I am not sleep deprived) and when I am not sleeping, my brain is stuck in the muck and mire of brain fog and cognitive dysfunction. And, every time I wake, there is profound sleep inertia (also known as sleep drunkenness).
Sometimes, I feel like IH is a mash-up of parts of these movies, Groundhog Day, Fifty First Dates, Momento, and A Beautiful Mind (note the distinct absence of Sleeping Beauty) complete with a soundtrack composed by Neil Sedaka – listening to the opening verse he wrote for his song, Waking Up Is Hard To Do, it seems he understood people like me. If not profoundly, in a simple, subtle way.
You slept your night now it's morning time
That's the time to rise and shine
Don't you cry and don't be blue
Wakin' up is hard to do
For me, the diagnosis was a roller coaster ride and revolving door journey spanning into my fourth decade of life with more insight into what it wasn't than what it was. When I finally received the validation of a diagnosis, Idiopathic Hypersomnia (later to include, treatment-refractory Idiopathic Hypersomnia), I was actually excited and felt vindicated. I wasn't a hypochondriac or any of the other things that some believed me to be, and it wasn't all in my head.
Well, it is in my head but not the way that I had often been accused of but rather, it's a brain thing.
As validating as the diagnosis was, it ushered in a time of great confusion on par with the complexity of my symptoms. I had never heard of IH, found little information about it, and less support. I also discovered that there were no FDA-approved treatments. Not only was I extremely frustrated, I felt alone and isolated.
“Fun Fact" – Many docs have not heard of it either because, currently, an entire medical school education includes only about three hours or less dedicated to sleep disorders and then, the primary focus is on insomnia with perhaps a mention of Narcolepsy - likely without clarification between Narcolepsy type 1 and Narcolepsy type 2. Thankfully, through the efforts and dedication of the Hypersomnia Foundation, awareness is growing.
It's been 10+ years since diagnosis and my severe symptom escalation, which took my ability to be gainfully employed away, stunted my ability to maintain relationships, and so much more. It is hard and the isolation can be wearying. Days are spent in transition between sleep and wake and the most consistent thing about my limited daily function is the inconsistency. I may look fine but there is more than meets the eye, IH impacts every facet of my life and everything I do. It's hard to explain and hard to understand. https://www.hypersomniafoundation.org/ih-in-a-nutshell/
For all the frustrations and hardships of IH, in that same 10+ ten years, I've been fortunate to also have some pretty amazing things happen. I am lucky – Shortly after my health-related decline at work and subsequent unceremonious exit from the world of gainfully employed, I was approved for Social Security Disability. Bittersweet as permanently disabled and no longer able to maintain gainful employment was, not a life goal..but I am grateful. First that I earned enough credits to apply and second, that I was approved. While my shift in life was abrupt and most difficult, in my worst times, I was lifted by some incredible people – some familiar faces and others appearing out of the woodwork.
It is also because of IH that I have met some new wonderful people who automatically understand because, they too are living with a central primary hypersomnia (Idiopathic Hypersomnia, Narcolepsy type 2, Narcolepsy type 1, or Kleine-Levin Syndrome) or love someone who does. And when hope was fading and tenacity running on empty, the creation of the Hypersomnia Foundation and their passionate quest renewed my hope for a someday better way. They continue to be a beacon and work tirelessly for the global hypersomnia community.
In the big picture, I know that I am more than this jacked-up disorder but, whether or not it is seen, IH invades every waking moment. I have had to come to terms with a life less realized, adjust regularly, accept limitations, break the measuring stick of society, redefine purpose, and remind myself that it is truly the simple things in life that spark joy. As I strive to thrive, I am learning to live a new mantra, do what I can when I can and when I can't, be gentle with myself but, when I can, be sure to aim for some fun. As Neil Sedaka sang as he finished out the tune,
Just listen to the birdies sing
And the flowers that await the spring
Rise and shine, you're dreaming's through
Wakin' up is hard to do
Know This Thing...
Waking up is hard to do but when my eyes do open on June 12th (well, sometime after the sleep-drunk morning clears), in honor of those also living on the spectrum of this disability, my ability will be riding for research! Come on good people, throw some monies and sponsor me on the Sleep/Wake Cyclers Ride for Research 2021.