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What to Remember When I Have to Cancel Plans Because of My Chronic Illness

They say tomorrow is another day, but with chronic illness, you are never going to know how you feel day to day. That is why we sometimes have to cancel, reschedule or just put our hand up and say, “not today.” What my day was supposed to be:

8 a.m.: Drive from my parents’ house to our office in Boston.

10 a.m.: Get to work!

1 p.m.: Meeting with Tufts Health Plan.

2:30 p.m.: Nap time!

5 p.m.: Inspire female entrepreneurs at Wentworth Institute of Technology!

6:30 – 10 p.m.: Work late into the night.

The morning commute started out like any other. My co-founder, Yousef, drove to Boston while I passed out in the passenger’s seat. Mornings are always tough for me, especially if I have to do an infusion through my PICC line. Once we arrived in Boston and I tried to get out of the car, I had trouble walking. Everything hurt. I felt like my 83-year-old self… Get my cane, people! Have you had this happen to you?

So what do I do next? Have a tantrum and make Yousef take me home. A whole day was gone. I took the second nap of the day  from 10:30 a.m. to 2:30 p.m. and as a result, had to cancel everything. I couldn’t walk, I had trouble with my words. I was confused about where I was. My stomach was doing backflips thanks to the 25 supplements and antibiotics I am on. My own version of “The Walking Dead.”

Every time my chronic illness acts up I feel like I am letting people down. My business partners. The people I have to cancel meetings on last minute. And most of all, the people who look up to me.

woman flexing her arm while wearing a PICC line cover and a shirt that says 'I'm not bossy, I'm the boss'
One of my good days going to Boston to work with my Collins PICCPerfect PICC Cover, to keep my PICC Line safe and protected!

To all of those who surround people with chronic illness: Please know we are not flaking out, rather we are just listening to our bodies. We can’t move forward without taking a pause. So thank you to everyone I had to press pause on. Thank you to my partners for helping me walk up the stairs and taking over my daily tasks and responsibilities on days I just can’t. Thank you to my boyfriend for making me food and tucking me in. And finally, thank you to all of my spoonie friends for understanding what I am going through. Sometimes I feel so alone, but it is having friends like you that keeps me going!

Originally published: March 2, 2018
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