This is the final installment of ten things I’d like to go back and tell my newly diagnosed self about living with RA.
This series of things about what I’d like to go back and tell myself was inspired by a book called, Rules for Kids. It was a collection of 187 rules compiled by two girls who both had younger sisters with which to contend. I heard about it on a television news story. The news story didn’t cover all 187 rules, but it gave a few examples, and I was especially struck by #105 – Tie your shoes or you’ll fall down.
When you think about it, that’s a pretty good rule for all of us, especially those of us with a chronic disease. To me the rule speaks of being prepared and dealing with a chronic illness is as much about planning ahead as it is reacting to current events.
So what can you do to “tie your shoes” for RA?
- Be compliant with your treatment plan. Medications can’t work if you don’t take them like you should. If you don’t like the side effects or don’t think the treatment plan is working, then talk to your rheumatologist. Don’t just make adjustments on your own.
- Practice good health habits. This helps everyone but it especially helps those of us battling a progressive disease. These habits include a reasonable diet, getting enough sleep, and exercise. We’ve all heard this, but ignoring this advice when you have RA can lead to a flare.
- Prepare as much as you can for the unusual. I travel a lot and early on I learned that the stress of travel could bring on a flare and ruin an otherwise enjoyable trip. I talked with my rheumatologist and now, with her permission, I generally take a low dose of prednisone while I’m traveling. Maybe you need extra help around the house around the holidays. Whatever it is, put plans in place to keep your plans in place.
- Manage self care. It’s easy to take care of everything and everyone on your list first and take care of ourselves last. That can be a recipe for disaster. Whether it’s a few minutes of meditation or quiet time for stress relief, a break from screen time, or even just picking up dinner instead of cooking and cleaning the kitchen – understand what you need and be nice to yourself.
- Educate those around you. This includes your family but it also includes your employer and others who rely on you. You need to help them understand your situation so that when you ask for help, they will better understand that it’s a necessity, not a luxury. The conversation will go more smoothly if it starts out, “Remember I told you I have RA and I might need X one day? Today is that day and I need you to work with me on this.” This is critical where work is concerned and your employer may be legally required to make reasonable accommodations for you.
- Develop or maintain a positive attitude. This is not as easy as it sounds. For many people, it takes a conscious effort. If this is you, start small. For example, at the end of the day write down three things that made you happy. This will lead you to look for those positive moments throughout the day and that can help change your focus from the negative. That doesn’t mean there aren’t times when feeling a bit sorry for yourself isn’t justified, because there will also be those times. Remember that you can’t always control what life throws at you, but you can control how you react to it.
I truly believe that “tying your shoes” supports the best possible outcome when dealing with a chronic disease. (On the other hand, I can’t wonder what would have happened to Cinderella if she’d had on shoes with laces rather than slippers. Would she have ever met her prince?)