How Bad Is It?

M.E. gets categorised as mild, moderate, severe, and very severe. I'm mostly moderate, but closer to mild than severe. That's only because I try to make myself rest before I feel tired.

Mild M.E. is when you lose at least 50% of your normal function. Imagine only being able to do half of what you used to accomplish, and having that considered mild. Then consider if you you want to do half of everything, or skip some things so you can fully complete others. How would you decide? Even if you were to decide that you do want to give 100% to one particular goal, M.E. tends to treat that 100% as a sliding scale. What you can do one day can be completely different to the next.

Moderate M.E is when a person is mostly housebound and requires help with taking care of themselves. This is where I am currently. I can do less than 50% of what I could do prior to M.E. and while I can feed myself, I need someone else to prepare my food most days. Some days I'm not capable of even heating food in the microwave. I am mostly housebound because most days going out is too taxing for me. If I look at my life month by month, I probably go out of the house about 5-6 hours over the course of a month, including medical appointments.

Severe M.E. is when you're mostly bedbound and need assistance with personal care. You're able to eat and drink but may need help feeding yourself, as well as with bathing, brushing your teeth, etc.

Very severe M.E. is difficult to fathom. Patients are in bed all day, usually in a dark and silent room because visual and audio stimulus are too much to handle. In many cases they require a feeding tube. Most have not been outside their bedrooms in years. All because their bodies don't produce enough energy on a cellular level.

Fortunately, not everyone with mild M.E. will progress to severe or very severe.