On Being Tired

Well that’s an understatement. I am not tired. I am exhausted. All the time. From the moment I get up until I stumble into bed. That doesn’t stop me from staying up too late and pushing it so that I don’t get enough sleep, more often than is good for me.

I’ve run the gamut of tests and diagnoses on this one. Before I was even diagnosed with depression, at age 20, I was complaining of being tired. As a kid I slept late – I was never a morning person but could always get up for school. When I started college the lack of a regular schedule contributed to my night owl tendencies and I was all over the place for sleep. While I was tired a lot, I was also 18 and could get away with pulling all-nighters. My GP at the time diagnosed me with low iron and anemia (those are actually two different things) and put me on iron supplements. It didn’t really help with the fatigue but I stayed on them for all of my twenties. For the past few years my blood tests have been low-normal so I don’t take supplements anymore.

I had a GP in the five or so years after I was diagnosed with depression (at age twenty, formal diagnosis: Major Depression with Generalized Anxiety Disorder and Panic Disorder) who tested me for everything under the sun, looking for the causes of both my low iron/anemia and my general fatigue. He didn’t find anything. I even had a barium x-ray (no idea why) but it didn’t find anything. So that was that for a while.

There have been years when I felt okay and years when I did not. There has definitely been a cyclical element to my depression and it seems to get worse when the fatigue gets worse. Then the depression gets better but the fatigue stays the same. For a while my doctors (by then I had a GP, a psychiatrist and a counselor) and I thought I had Chronic Fatigue Syndrome, and I was on a waiting list to see a rheumatologist for about a year, for a diagnosis. In the last five or so years the fatigue has become pretty debilitating. After doing a lot of research I realized I don’t have CFS, I have hypersomnia. It’s a symptom of atypicial depression, which my current psychiatrist has diagnosed me with (it explains the cyclical element too). Wikipedia describes idiopathic hypersomnia like this:

Idiopathic hypersomnia is a disease, thought to be a neurological disorder, which is characterized primarily by severe excessive daytime sleepiness (EDS).[1] It has historically been rarely diagnosed and is often very difficult to diagnose at an early stage; it is usually a lifelong chronic disease, which is often debilitating.[1] There is a very low level of public awareness of idiopathic hypersomnia, which often leads to stigma for those who suffer from it.[2] Currently, there is no cure, there are no FDA-approved treatments, and research funding for its study are scarce.[3] [4]

 

So basically, I’m fucked. How does someone like me, who wants to understand and research my condition, and do what I can to make it easier to live with, not lose all hope when reading that? Basically, there is nothing to be done. You are 34 years old, you’ve been tired for about half your life and you’re looking at fifty more years of it. If the pattern continues as it has, you’re going to get more tired as time goes on. I just struggle so much  with understanding what the point of my life is sometimes.