Why Pushing Through Doesn’t Work With IH

There are many things that surprised me about receiving an idiopathic hypersomnia diagnosis, but the most shocking was realizing how much I had to unlearn about what it means to be a person moving through the world. Having idiopathic hypersomnia has forced me to rethink the vision I once had for my adult life.

How idiopathic hypersomnia differs from a "typical" life

Usually, we learn that when we are tired, we rest, and when we rest we will feel better the next day.

For someone with idiopathic hypersomnia, getting more rest doesn’t mean you will feel better, more well rested, or more energized the next day. The best way I can describe it is feeling lethargic, like if you had the flu.

That weighted cloud of fatigue is oppressive and never ending.

Modifying exercise with idiopathic hypersomnia

I also had to stop exercising, which for so long had been how I kept my mental health in check and built community.

As a youth I loved the feeling of being strong, being able to run fast and far, and to work hard to build muscle and endurance.

But in college I began to develop exercise intolerance. Exercise intolerance is defined as the limited ability to do physical activity like someone you age normally would.

This can happen due to underlying health conditions - like idiopathic hypersomnia.

Recovering from exercising

It began taking longer and longer for me to recover.

I remember doing a short HIIT workout once and then having to stay in bed for the next three days because my energy was so low and my body so fatigued.

Instead of making me feel energized, exercise zapped what little energy I had left.

Managing injuries

I also kept getting injured. I couldn’t simply push through the pain.

I tore my ACL, got stress fractures and experienced daily POTS attacks.

Over the last ten years I’ve severely cut back on exercise which has had a dramatic impact on my mental health, as well as my physical health.

Actionable tips to manage health with idiopathic hypersomnia

So, how do I take care of my mental and physical health living with idiopathic hypersomnia?

Micro goal-setting

By setting very small, incremental expectations. And keeping my ego in check.

I used to run a sub-6-minute mile and now I count it a success if I walk for 20 minutes on the treadmill. For a long time, this was hard for me to let go of, an identity of peak physicality descended into one of extreme lethargy and illness.

Choosing realistic outcomes

I’ve had to reframe what success looks like and be very very patient with myself.

I know that if I push it, even a little bit, I will set myself back months.

This means unfortunately, also limiting the group exercise classes. Sometimes I get too competitive and forget to listen to my body. Also, not many teachers are educated in how to modify classes for people with hypermobility or other chronic conditions.

Keeping an exercise routine with hypersomnia is possible

For the past six months I’ve slowly integrated these interesting fascial maneuvers with breathing exercises into my daily life.

At first, I struggled to do them every day and set my goal to 3 times a week. Now, I can do them everyday and notice that my joints hurt more when I skip a day.

If you are interested, I like the group Human Garage and they are free!

What have you noticed living with idiopathic hypersomnia and exercise? Did you used to have a daily exercise practice pre-diagnosis? Have you changed the type of exercises you do to better fit your lifestyle and energy?