There are different degrees of severity of ME, mild, moderate and severe. You can fluctuate between the different degrees at different times which makes it even harder for other people to understand.
In mild cases you can care for yourself and still do a lot of ‘normal’ activities but with a struggle. You may still be able to be in education or work, but often have to take days off because your body doesn’t cope or respond in the way it used to. In order to be able to continue education or work you are likely to have had to stop leisure and social activities to cope and weekends or other days off are used to rest.
In moderate cases you probably have reduced mobility and are restricted in most activities of daily living. You are likely to have had to stop work or education and require frequent rest periods. Moderate cases are usually housebound but able to get out of bed and be around the home albeit with a struggle. Occasionally able to get out of the house for short periods of time relying on disability equipment to do so.
In severe cases you are bed bound. You are forced to spend all your time in bed as you cannot physically do anything else. Unable to tolerate light, noise and movement so have to live in a dark and quiet room. All stimulus make your symptoms worse.