My 5 Rules for the 'Good' and 'Bad' Days of Chronic Illness
Recently, I was talking to an out-of-town relative about visiting. She asked me if I was still vomiting and I said yes. “Why don’t you wait? Who wants to travel like that?” I just replied, “This is my new normal.”
I have gastroparesis, so my stomach digests slowly. For me that means a lot of vomiting. Some good days for me include going out with friends, excusing myself to the bathroom ever so often to vomit then rinse my mouth out and return to my friends. For me a good day is being able to keep water and some food down so I can have fun. A good day is not getting dehydrated. A good day might including me vomiting seven or eight times. When I tell this to people, they are often surprised and wonder why I don’t just stay home.
There’s a lot talk about “good days” or “bad days” but ultimately, there’s a confusion around them.
What might be a healthy person’s “bad day” could be a chronically ill person’s “good day.” What might appear to be a good day to a chronically ill person’s friends or family could be a terrible day for them.
As a chronically ill person, I feel the need to take back the phrase “good day.” Here what I think about good and bad days:
1. A good day is a good day is a good day.
If you are a chronically ill person and you feel you are having a good day, you are having a good day. No one else can say what a good day means in your body but you. While some people might look at you and say, “Why don’t you go home” or “I think you shouldn’t have come out,” they’re wrong. Why? ‘Cause you said so.
2. A bad day is a bad day is a bad day.
If you are a chronically ill person and you say you are having a bad day, you are having a bad day. You don’t have to be entirely exhausted to have a bad day. You don’t have to be at a 10/10 pain level to cancel. You don’t have to go out, even if you have cancelled before. You get to decide.
3. You get to go out even if you look “sick.”
You can go out even if you need to use mobility device you haven’t previously used. You can go out in a wheelchair even if someone says, “But I’ve seen you walk.” You can go out even if that might mean you have to excuse yourself and spend some time in the bathroom.
4. You can pace yourself.
For a lot of people, they might be able to go to the mall or eat a piece of cake or go to the fair if they want to; however, if I did one of these things I’d have to stay in bed all of the next day, or I might even end up in the hospital. Never feel like you have to go, even if you feel up to it. Pacing yourself isn’t paranoid or being a spoilsport. It is protecting your body, even on a good day.
5. You get to choose how to spend good days.
Sure, maybe you should get some basic responsibilities done. But don’t feel like having a good day means you have to see all the acquaintances you cancelled on or go volunteer at the library like you used to do. As a chronically ill person, you should be allowed to enjoy your good days without feeling an obligation to do something “just because you can.” Spend your good days with your loved ones. Meet friends for coffee. For a food-free, low-energy outing, go to big stores and have your friends push you in cart or wheelchair and make fun of literally everything.
These are the rules I have tried to live by for past three months while I’ve been sick. I’ve learned to take care of myself. I’ve learned to forgive myself when I miss things. I had to forgive myself when one of my friends passed away and I hadn’t seen her in three months because I was too sick. And because of that, I try to make every good day the best day.
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