At the heart of managing any chronic illness is finding balance in our lives. There are never any perfect, risk free solutions to the problems we face. Thus we have to constantly weigh risks vs benefits of treatments and quality vs quantity of life.
Going through a long trial and error process is, unfortunately, completely normal. That process never really stops. As your condition changes, your treatment plan will change too. Which means another round on the trial and error merry go round.
It is completely reasonable to be frustrated by that process. So, how do we stay sane when constantly seeking for this balance? Especially since there are few answers that are black and white, nothing is defined and everything is subjective.
I recommend you draft up a list of symptoms that you feel are impacting your life and would like to have improved upon. This will help you consider what is effecting you. Start by listing everything that comes to mind, no matter the degree of importance.
Then rank those symptoms by importance. Which of these symptoms is effecting your our life the most? You are not likely to be able to work on everything all at once, so the idea here is to put your symptoms in a list by what order you would want them addressed in if they had to be dealt with one at a time. This is to set your priorities.
Then, define what “better” looks like for each item on your list. So say you want better focus. What does that mean for you? Does it mean being able to read a book or being able to attend to a conversation? The better you can define this, the better measuring stick you will have throughout your treatment. Be as concrete as you can be with this. If you are looking for reduced pain, it may be helpful to look at it from the angle of what it keeps you from doing and what you would need to be able to do to consider your pain better. If your knee pain keeps you from standing, is being able to stand better? Or do you need to be able to walk to be better? There is no right or wrong to these, it is simply your opinion of what successful treatment would look like.
Now you have a good foundation for a conversation with your provider. You can present clear goals and priorities. This will help keep you and your provider moving in the same direction. You will also be able to have a conversation about expectations regarding treatment outcomes. If the doctor knows what you are hoping to achieve, they can better assess the possibility of getting there.
Doing the Trials
You and your provider should choose which symptoms you’re going to start working on. Start tracking each of those symptoms. Make it a set part of your routine. Use an app or a journal. Set an alarm to remind you. The more consistently you collect data, the more easily you will be able to discern patterns and find solutions.
Score each item on a scale of 1 to 5 every day. 1 is the opposite of what you want to be and 5 is exactly where you want to be, so 3 is doing pretty good. This is just a self assessment that will let you see trends. When you track symptoms with clear goals, it becomes easier to answer the question if the treatment is helping or not.
The Long Game
Remember that it is a process. Real, meaningful change is hard and takes time. For most of us, it is something we work on for all our lives. But things can be better.