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We feel bad enough about what we can’t achieve and what we miss out on.

I bet every single person with Idiopathic Hypersomnia can relate to this “But what you don’t know is that I pass on many experiences and opportunities because I am sick. Some things are too difficult, some things are not worth it, and some things could be detrimental to me. What you don’t know is that having a chronic illness is like losing every part of what made you who you are. Sometimes I feel like I’m reaching out for a tiny thread that is tied to life — not life itself (because I’m here, I’m living, I’m on Earth) — but to what living life actually meant to me before I got sick. And I’m trying to grasp that thread that connects me to my old self and to what I love to do and hold it close, because I know what makes me a person — what makes me me — is almost gone. I mean, is a life really a life when it doesn’t have goals, dreams or desires? Or no hobbies or social outings? No ways to express itself? No means to take care of itself? No ability to give of itself? Because I am very close to losing every single one of those things.”

The quote is referring to living with pain but you could easily replace the word “pain” with the words “excessive sleep”. “It happened gradually. The more “excessive sleep", the more I lost. I started out with hopes and dreams… and I quickly realized that most of those dreams won’t happen because of my “need for excessive sleep”. Then (just so I’m not constantly sad about those wasted dreams), I began to push the dreams away and forced myself to forget about them. I pushed them further and further away until I finally realized that I barely have the ability to dream anymore. It is difficult for me to think of anything but my “need for excessive sleep”, and my only dream now is to lessen that ”need for excessive sleep”.

Bailey’s story is titled “To the Person Who Thinks I'm Healthy Because I Tried Today”. I know people with Idiopathic Hypersomnia will relate to her story, not just because I have Idiopathic Hypersomnia too but because I’ve listened to many people just like me. My friend Diana Kimmel wrote recently “I believe many of us get this type of judgment when we do something "normal". What they don't realize is that it took all our "spoons" that day and possibly support from others. Not to mention we usually pay for it for a few days after. What most do not understand is that we CAN do normal activities from time to time, but we are unable to string those moments together with any type of consistency or dependability.” The “spoons” Diana refers to is from “The Spoon Theory” by Christine Miserandino.

When researching for this article I found this explanation for the spoon theory “The theory is simply a story that explains what it is like to live with a chronic illness or disability. A person who is chronically disabled or ill only has a limited amount of expendable energy each day. The spoon theory uses a metaphor of spoons to turn energy into a measurable concept. A person living with chronic illness or disability only has a certain number of spoons in their possession each day, and every small action a person takes can result in a lost spoon. Once a person loses a spoon, it is very hard to get that back until after a full night’s sleep. Simple actions like getting out of bed, taking a shower, walking, and driving can require enormous amounts of energy that people don’t have.”

Now imagine what it is like for someone who suffers from a chronic disorder that for many means NO amount of sleep guarantees they will get their “spoons” back. This is what living with Idiopathic Hypersomnia is like for most of us. “But there is medication isn’t there?’ I hear you say. The medication that is typically prescribed for people with Idiopathic Hypersomnia does not treat the cause it only treats the symptom of sleepiness so it can sometimes actually make our situation worse! Yes, it can assist to keep us awake for a short time, however how helpful is keeping someone awake who has a very real need for excessive amounts of sleep? What do you think happens to someone who is kept awake when their brain needs sleep? Yes, they suffer sleep deprivation. The problem is people with Idiopathic Hypersomnia can experience the effects of sleep deprivation despite regularly having 8-9 (but typically much more) hours of good quality sleep. So many people with Idiopathic Hypersomnia suffer the effects of never feeling fully awake and constantly feeling sleepy but their medication can also cause them to be sleep deprived! Read *no win situation*

The spoon theory for people with Idiopathic Hypersomnia can mean that they may never know how many spoons they are going to have from one day to the next because sleeping does not give us back a new supply of spoons. On top of this the medication we are prescribed doesn't treat the cause and it often makes the symptoms worse so it doesn't guarantee a new set of spoons either. The perfect analogy for using stimulants and wake promoting medications for Idiopathic Hypersomnia is a quote from Dr Jenkins Associate Professor of Anesthesiology and Assistant Professor of Pharmacology at Emory University, “it is like flooring the gas pedal in a car with the park brake engaged". It would seem that people with Idiopathic Hypersomnia need treatment options that actually turn sleep off rather than simply force them to stay awake. So the next time you have an opinion about someone with Idiopathic Hypersomnia or some words of advice please remember these key points:

  • A ‘good nights sleep’, healthy diet and exercise are vital for the physical and mental wellbeing of everyone but they will not make the symptoms of Idiopathic Hypersomnia go away. In fact research suggests our quality of sleep is typically better than the average person and yet most of us still don’t wake up feeling refreshed regardless of how much sleep we have.

  • The medications that are used for Idiopathic Hypersomnia are not ideal because they don’t target the cause. Also, current medications only partly assist in managing symptoms, there are potential unpleasant side effects and they are often not effective long term.

  • There are no medications that assist with the extreme difficulty waking up or the sleep drunkenness and cognitive dysfunction that many people with Idiopathic Hypersomnia find so difficult to manage. It’s all well and good to have medication that will help you stay awake however it is not much good to you if your biggest problem is waking up in the first place. And how helpful is it anyway to keep someone awake who has a very real need for excessive amounts of sleep?

And finally, as Diana said “we CAN do normal activities from time to time” but please remember that we rely on inappropriate medications that do not target the cause and that only address some but not all our symptoms. Also, for many of us despite medication we stumble through life without ever feeling fully awake. So what we need apart from decent medications or even better, a cure is the help and support of others. Being judgmental of us doesn’t help our situation; in fact it only makes it worse. We feel bad enough about what we can’t achieve and what we miss out on.

You can read the rest of Bailey Klentzman’s story here “The Spoon Theory” by Christine Miserandino First published during the 2017 Idiopathic Hypersomnia Awareness Week

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