I have quite a rigorous daily routine which has both its benefits and its downsides. As a profoundly disabled person, your daily routine makes life easier and allows you to make sure that you are managing things like your health properly. For example, I take my tablets when I get up and I use my cough assist machine three times a day. It allows me to plan around my day and have a nice structure in place.

However, my routine can make me quite inflexible some times and this may not always be obvious to other people. It can take a long time to get out of bed, and to get ready, and things like when I use the toilet can make my routine quite rigid. This can mean a lack of spontaneity when it comes to going out. It also can make appointments difficult to arrange in the early mornings as an example.

It does feel like there can be a lack of understanding when it comes to this for people with disabilities. I have found this recently with appointments, sometimes it is difficult if an appointment is changed without warning. A couple of weeks ago, one of my appointments was made two hours later with very little notice, and this was very disruptive.

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