Idiopathic Hypersomnia vs. ME
The 6 Phases of getting Diagnosed with Idiopathic Hypersomnia
Phase 1: Denial:
After about 3.5 years of peeling myself out of bed to head to yet another doctors appointment, I was officially diagnosed with Idiopathic Hypersomnia. When I followed up with my Sleep Doctor, she said to me: "We will never be able to give you back the energy and life you had before; but we can try to make your life as bearable as possible".
I was frustrated, sad and angry when I left that office. I wanted a magical cure that would make me feel like myself before I got mononucleosis when I was 20 years old. I wanted to go back to the good-ole-days where I could stay up all night hanging with friends, work out 5 times a week, and be an overachiever in school. To me, it felt like this doctor just shut down any chance of me regaining that life back.
Phase 2: Research. and more Research:
With that, I decided to do as much research as possible on this diagnosis and its treatments. I turned to blogs, research articles, websites for sleeping disorders, and even pinterest. I was desperately trying to find answers but felt like I was swimming upstream. The websites all started to blend together and just define IH, but not provide any sort of advice, reviews on treatments. The only active support groups included Narcoleptic patients and Insomnia patients, which primarily dominated the conversations and articles. The closest thing I found geared towards IH, from those with IH/CFS, was on Reddit and Pinterest.
Phase 3: The Emotions
Honestly, I had a mid-life crisis equally as dramatic as it is in the movies. I'd like to say that I felt better when I got the label: Idiopathic Hypersomnia. After all, shouldn't it be comforting to have an actual doctor-diagnosed problem? But I still felt hopeless. A month passed since that dream-shattering doctors appointment. I was just going through the actions: the daily struggle of getting ready for work and not remembering the drive into town, the brain fog that impacted my working, and the inevitable crash around 3pm that didn't care how much coffee I had or how exerting my day was. I'd come home, take off my work clothes crawl into bed and let sleep consume me once again.
Phase 4: Growing a Pair
Not really sure if it was a person who told me to get my sh*t together, or if it was the repeated feeling of being left out...but either way, I finally got the balls to reach out to the doctor to discuss treatments. And boy, I walked into that appointment fully loaded. I had notes from scientific articles, medication reviews, and even compiled information from blogs, reddit and pinterest. I was not going to let this doctor tell me I was hopeless again.
Phase 5: Trial and Error.
I never understood the phrase of "trying to find a needle in a haystack" until this part of my life. Rather than finding one needle in a haystack, I had to find a "fragmented needle, tape the pieces back together, and hope it still works" needle in a haystack.
Lets just say I am still in that stupid barn trying to find my first needle fragment.
Phase 6: Coming Soon...
So in my most polite manners, I must admit that I do not know all the answers or the magical cure. I am just another person fighting against a rare debilitating sleep disorder. In the end, no one will really be able to understand how challenging/taxing it is to be awake enough to try to blend into normalcy... except those that battle with it themselves.
After about 3.5 years of peeling myself out of bed to head to yet another doctors appointment, I was officially diagnosed with Idiopathic Hypersomnia. When I followed up with my Sleep Doctor, she said to me: "We will never be able to give you back the energy and life you had before; but we can try to make your life as bearable as possible".
I was frustrated, sad and angry when I left that office. I wanted a magical cure that would make me feel like myself before I got mononucleosis when I was 20 years old. I wanted to go back to the good-ole-days where I could stay up all night hanging with friends, work out 5 times a week, and be an overachiever in school. To me, it felt like this doctor just shut down any chance of me regaining that life back.
Phase 2: Research. and more Research:
With that, I decided to do as much research as possible on this diagnosis and its treatments. I turned to blogs, research articles, websites for sleeping disorders, and even pinterest. I was desperately trying to find answers but felt like I was swimming upstream. The websites all started to blend together and just define IH, but not provide any sort of advice, reviews on treatments. The only active support groups included Narcoleptic patients and Insomnia patients, which primarily dominated the conversations and articles. The closest thing I found geared towards IH, from those with IH/CFS, was on Reddit and Pinterest.
Phase 3: The Emotions
Honestly, I had a mid-life crisis equally as dramatic as it is in the movies. I'd like to say that I felt better when I got the label: Idiopathic Hypersomnia. After all, shouldn't it be comforting to have an actual doctor-diagnosed problem? But I still felt hopeless. A month passed since that dream-shattering doctors appointment. I was just going through the actions: the daily struggle of getting ready for work and not remembering the drive into town, the brain fog that impacted my working, and the inevitable crash around 3pm that didn't care how much coffee I had or how exerting my day was. I'd come home, take off my work clothes crawl into bed and let sleep consume me once again.
Phase 4: Growing a Pair
Not really sure if it was a person who told me to get my sh*t together, or if it was the repeated feeling of being left out...but either way, I finally got the balls to reach out to the doctor to discuss treatments. And boy, I walked into that appointment fully loaded. I had notes from scientific articles, medication reviews, and even compiled information from blogs, reddit and pinterest. I was not going to let this doctor tell me I was hopeless again.
Phase 5: Trial and Error.
I never understood the phrase of "trying to find a needle in a haystack" until this part of my life. Rather than finding one needle in a haystack, I had to find a "fragmented needle, tape the pieces back together, and hope it still works" needle in a haystack.
Lets just say I am still in that stupid barn trying to find my first needle fragment.
Phase 6: Coming Soon...
So in my most polite manners, I must admit that I do not know all the answers or the magical cure. I am just another person fighting against a rare debilitating sleep disorder. In the end, no one will really be able to understand how challenging/taxing it is to be awake enough to try to blend into normalcy... except those that battle with it themselves.