Life with chronic illness can be hard, isolating, and brutal at times. This doesn’t mean that our lives are any less fulfilling, just that we have more bumps in the road.
When I first relapsed with late-stage Lyme disease and was subsequently diagnosed with other chronic illnesses such as dysautonomia, chronic inflammatory demyelinating polyneuropathy, medically-induced post-traumatic stress disorder, and hypoglycemia, I used to spend my bad days trying to decipher what could have gone wrong.
Did I overdo it yesterday?
Am I reacting to a new protocol?
Do I have a cold presenting as a flare in my symptoms?
Did I accidentally eat gluten or too much sugar?
Acceptance vs. Resistance
I would spin in circles trying to find an explanation for why I was feeling so awful. I needed to know there was an answer, so that I could do something about it. I would obsessed about my PICC line and overwhelm myself with information, most of which only brought more questions than answers. This resulted in anxiousness, stress, frustration, and precious brainpower wasted on searching for answers.
After a long time, I realized that it’s easier to accept the bad days as they are, rather than question them.
Chronic illness comes with ups and downs, often without explanation. If you’re having a horrible day, it doesn’t mean that it’s your fault or that you did anything wrong. With chronic illness, you can do everything in your power to take the best care of your body that you possibly can, and you will still have rough days.
Dealing with the Hard Days
Instead of squashing my feelings of frustration, anger, or despair, I let them out. I cry if I need to, vent to my mom, or do whatever it is I have to do to release those feelings. It’s healthier to feel what you’re feeling, rather than letting that tension build up inside of you.
Then I spend the rest of the day doing things that bring me joy. Depending on the day and how ill I’m feeling, it can be anything from writing, reading, drawing, coloring, or watching a TV show I really enjoy. While doing this, I am intentional about my realistic goals for the day and my feelings around my productivity.
On the worst days, my goal can be as small as bringing my dirty dishes to the dishwasher. I do my best to live intentionally and accept my limitations on the hard days without guilt. It’s easy to get caught in the trap of feeling like you have to live up to the expectations of others who aren’t dealing with chronic illnesses.
Expectations for your day should be yours, and yours alone. Huge goals for us are minuscule for healthy people, and that’s okay.
You are enough just the way you are!
How do you deal with the bad days? Join us for a more intimate conversation on our Friends in the Fight Facebook Group.