On Someone Else’s Clock

Something many can appreciate is being subject to someone else’s clock.

Whether it’s work, calling you in early, the doctor asking you to come to an early appointment, kids having school activities, or any other obligation.

Yet, living with a disability, your entire daily schedule can be subject to others.

Getting up, depends on the caregiver’s schedule.  Sleeping in, depends on the caregiver’s schedule.  Even how frequently you can use the restroom, depends on the caregiver’s schedule.

An article I recently read, https://smanewstoday.com/2020/08/31/early-start-times-inaccessible/  , wonderfully shares a tale of some of these challenges.  The author, Brianna, wonderfully notes the frustrations with scheduling appointments, and the challenges on routine and body (where for many of us the fatigue and/or complications of changing routine can last days).

I’ve had to train my doctors, my employer, and even friends that I have to book rides 1 day in advance.  I’ve had to train them to my daily schedule (which is set by my caregiver’s availability and my daily basic needs).

Often faced with the desire of being social and attending social outings, while debating social schedule versus my care schedule.  “Yes, I’d love to come to your house/party at 8 PM, but then I have to decide whether to skip my 9 PM bed visit and stay up until 1 AM, while getting up at 7 AM tomorrow (even though it’s a weekend)”.  Even letting family know that I can hit the road early, but then my bodily needs may be disrupted for the next few days, as I have to change my daily toileting schedule and hope I can make due.

While there may be no easy remedy for this, sometimes awareness of these challenges can help.  I appreciate that my friends, family, employer, and others have been accommodating.