The Unseen Clock: Time and Chronic Illness

Don’t give up on me yet because …

Mar 04, 2025

This is a continuation of a piece from yesterday.

Also, because I always must say at least once per week:

I give away “yearly free subscriptions” all the time- the second anyone asks (I otherwise don’t know to do so, so that simply helps me input their email)-

So if YOU ever need one or know someone who would, just shoot me their email and consider it done!

Supportive Word Nerds make THAT “policy” (terrible business model) of charitable giving- always and onwards- completely possible by encouraging this work.

THANK YOU!

Every year I exist, this schedule of mine gets worse.

It’s hard to help others understand why the way that they view and experience “time” might not be the same as how someone with an ongoing illness does.

This isn’t shared to be whiny or dramatic or to make you feel unky. Im sharing it at midnight after a long day, because as my family is passed out blissfully asleep at their usual hour… I found myself living the strange schedule of which I’m shackled.

If more of us knew that time really IS different for many like me, or with far worse situations, or newly diagnosed, or struggling through treatments: More of us would know that the best way to show up is not policing or assuming another’s time.

Because our clock can look far different.

After waking up in pain, I did a ton of office work (I partially work from home, though that’s soon to change) while wondering when to eat. If I don’t meticulously time my meals or snacks around my work schedule, it can genuinely destroy the day.

If I eat too close to when I need to leave or drive, I’ll get stuck in the bathroom sick instead. If I eat in the car on the way to my “in person” work, I’ll often edge my way towards an obstruction because not having a colon and sharing a public restroom with your colleagues do not mix.

I time meds carefully around my drive time and often cause myself extra pain with safety in mind. For the same reason, I also resent driving, and sometimes can’t “afford” the time it takes to get gas or be stuck in traffic, as a few extra minutes in a car with the pinched nerves I have in my spine can mess up the following day.

Often, I hurt so much from driving that I can’t eat dinner when I get home “late”, because I can’t sit up again right away. Other days, I can… but all meals need long latrine allotments because of my defunct GI system (and that’s on a good day; Not when I’m having liver or pancreas problems, for example). This means that I always spend a solid hour in the bathroom after having dinner with my fam while watching Severance or something… and come back out to find them both asleep.

I then take more meds and muscle creams and lay on ice to try to get the pain to go down so I can sleep, which normally takes at least another hour or so.

So on a good day, it takes 2 extra hours over whatever time it took my loved ones to experience a meal and an ordinary weekday bedtime.

Getting out the door to work takes an extra hour typically- because of difficulties carrying things to the car, medication timing, meal timing, and so much more.

And that’s all “normal day” maths comparisons… not sick or emergency day maths. None of which can be predicted. All of which are always an unwanted surprise punishment.

Catching Breath’s Substack

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