“The worst part is the unpredictability”
When Elsa's users share what it's like to live with a rheumatic disease, unpredictability is what is mentioned most often as one of the hardest parts. Not knowing how you will feel in a week, or maybe even tomorrow, or having to worry about a flare-up just when you are going to a job interview or going on that long-awaited trip.
Even if you take your medicine, even if you eat well and make sure to prioritize your sleep and all those things you've heard so many times, a certain amount of uncertainty always remains. Unfortunately, it is part of the package having a rheumatic disease.
How do you learn to live with a constant readiness to change your plans? Is it possible to handle the uncertainty itself?
Yes, there are several things you can do to make life easier. RheumatoidArthritis.net addresses four strategies for managing the unpredictability (1):
1. Document!
Whether you prefer to document digitally or physically, notes are a great way to track how you feel over time, and an invaluable source of information that no one but you can create.
The longer you have been logging details about your health, the more likely you are to discover patterns around symptoms, treatment, and lifestyle. In the long run, these patterns can help you and your doctor make informed decisions about what type of treatment might be best for you based on your personal circumstances.
Hopefully, a more accurate treatment also means a lower degree of unpredictability.
2. Identify cause and effect
Use your documentation to see what causes certain symptoms or discomfort. If, for example, you find that you always feel uneasy after taking your anti-rheumatic medication in the morning, perhaps you could take it before going to bed instead?
3. Be prepared with plan B
Be sure to have a plan B—and maybe even a plan C and D, in case your original planning doesn’t work out.
If you're going to spend a weekend with friends, think ahead about what these different plans mean for you. Plan B might still be on go for the full weekend but you make sure you will have the opportunity to spend some time resting if you need to. According to plan C, you're only there for one of the days, and if you need to put plan D into action, you'd just join for dinner.
4. Accept the uncertainty
Accepting is not about giving up, but about learning to see at what point, in different situations, the most reasonable thing is to give in and actually accept the situation as it is. Of course it's not fun, but sometimes we have to stop fighting. Forcing the body to do things it can't really do right now might mean you will have to pay back later.
Personal database
At Elsa, we know from experience that your own notes about how you feel can be incredibly valuable in the long run. That's why we've made it possible for you to log how you feel day by day in the Elsa app, and in that way collect all this information in a personal database. If you haven't already tried it, maybe now is the time?
And remember: If your situation feels too unpredictable, it may be that your treatment needs to be reviewed and adjusted. In that case, do not hesitate to contact your doctor!