As people with a chronic illness, we talk a lot in support groups about feeling bad, having a flare, medication side effects etc etc.Talking to others who understand your pain really helps us carry on a bit longer without breaking down. But we rarely talk about something I think most of us experience more than we admit. The feeling of waiting for the other shoe to drop, so to speak, the anxiety of knowing we might not feel this good for long, when we feel okay.
Now "okay" is subjective. I know personally for me, I don't remember a day where I felt 100 percent normal. I have pain every day, I still have to watch what I eat, the medications I take leave me feeling tired and out of sorts. But overall, I have been doing much better. I work full time and don't come home wiped out completely. I enjoy as much time as I can with my family, particularly my beautiful grandchildren. My amazing man and I got married this past summer. I clean. I thrift shop. I bake. I'm trying to start up a little side business with my love of baking. So, when people ask me how I am doing, I don't feel like a complete fake by answering with "I'm okay".
But one thing that lingers is the anxiety of wondering "when will I not feel okay?". Because I know there will be a day when I flare and am ill. And sometimes that worry can be insidious. It can eat into the joy I could have on days when I am feeling better than normal.
So, how do we deal with that? how do you push that little evil disease demon to the back of your mind while he's whispering "A flare is coming..."?
To be perfectly honest, I don't think it's totally possible. You always have to be prepared. Whether its a doctors appointment or tests or a hospital stay and time out of your schedule, you do have to have a plan.
But you can tell Disease Demon to shut up and quiet his voice by getting busy living. Keep busy. Work hard to balance self-care and fun. For me, baking and spending time with the family are things I do as much as possible to really keep that joy at the front of my mind. And I am completely honest with my doctor when anxiety begins to get the better of me. I take a mild anti-anxiety medication when needed to help keep that little voice quiet. There is nothing wrong with asking for help. We deal with a lot. Not just day to day life, like everyone, but dealing with day to day life while living with an illness that is slowly eating away at our bodies.
One thing that I find really helps as well, is to share the joy with others. Instead of only talking about your disease when it's active, share when you are having a good day. When someone genuinely is concerned and they ask you how you are doing, let them know , "Today, today is a great day!" Sometimes being positive about your own issues really boosts someone else who might be struggling with their own. Making someone else smile is some of the best anti-anxiety medication you can have.
Don't cower and wait for the "other shoe to drop". Make Disease Demon shut up and skulk away. Get out there and enjoy every precious moment of a good minute, hour, day, week, month, year.
