How do you make sure that the different pieces in your life all stay stable and well managed? The answer is that there’s no magical answer for everyone in doing this and that, unfortunately, it’s just a lot of trial and error. No matter how good of a regimen you have, no matter how good of a system, and no matter how good a support structure you have, there are always going to be flares and there’s always going to be difficult days that your symptoms are more pronounced than on other days. I think the key to focus on isn’t whether or not you’re having flares, but whether or not those flares are at a manageable level, and whether or not they’re staying at the same amount of frequencies.
This is place that I find, keeping a medical journal is super helpful. I keep track of my symptoms, and I keep track of what I’m doing for my symptoms. It gives me an idea of what’s working and what’s not working. Because sometimes our memories play tricks on us and when we have flares we can focus on those a lot more than on the days that have been good and our symptoms have been less. So, we can end up misperceiving that or last month has been a lot more symptomatic than the month before.
By using a journal and every day at the end of your day reading how your various challenging symptoms are and taking notes as to how your day went, can help you get a perspective so that at the end of the month you can kind of review and summarize how that month went. Then from month to month, you can compare how you’re doing overall. Are your symptoms getting worse, are they improving or are they staying about the same? Are there interventions that you frequently use that really aren’t that helpful? Then you know you can just get rid of it and try something else. Or are you finding that every time you do this one thing you just have a really good day? Well you can start doing that more because it’s useful.
The other advantage to keeping a medical journal is that when you go to a doctor and they say, “Well how many migraines to have every month?” You can actually answer that question in a really accurate way and in a really useful way. And if they start asking you “When did this particular set of symptoms start?” you again have a really good record of that and you can give better information, and the better information that you can provide to the people that are trying to figure out how to help you with your care plan, the better they can figure out what’s going on and can better figure out what’s going to help you. So it for you, and it’s for your treatment team so that you can have a better sense and a better capturing of what isn’t isn’t going on.
As much of a challenge, as it is to get started in medical journaling, I cannot speak enough of the value of it. It does take some time to figure out your own personal style and system that is compatible with your life, and that will help you capture the information that is useful to you. But once you have that system down and have built the habit of doing your medical journal, you can really capture the information that you need to know what’s been going on.
So, what is in a medical journal? This is something that will look a lot different for everyone. Don’t get too hung up on what it should be, but instead focus on the function that it is serving and the ways that will make it easiest for you to use. This is just a system that you use every day to track your symptoms. You can use apps or spread sheets or recorded audio notes or whatever you find most helpful and the easiest to use. Don’t let the name of it limit you into thinking that it has to be a book that you carry around. I personally do use a notebook. Because that’s what works for me. I like the kind that is set up to be a bullet journal, you know, the one that has all the little dots in a grid pattern. I just find that style to be the most flexible in setting things up.
I will start the journal with a set of scales. This is just my personal rating system and there’s no like right or wrong way to rate your symptoms. All that’s really important is that you’re using something consistent, you’re using something that makes sense to you and you’re using something that can make it very clear whether or not your symptoms were better today than yesterday or not.
I have a set of symptoms that I find to be important to track because they have an impact on my day. They have an impact on my quality of life. And those are the things that I focus on. I then get each of those symptoms a sale scale. Sometimes it’s like a one to five, because I personally just don’t feel that it’s much more useful to go up to 10. I have a pain scale one to five. A one is like cake; good day, easy to ignore. A five is no functioning. I am in so much pain that I am just a quivering mass of protoplasm that can just barely ooze across the floor. I also keep track of my mood and my focus and how much I’m fidgeting for my ADHD symptoms. I keep track of whether or not I’m having headaches, and whether or not I’m having syncope and palpitations. Some of these symptoms are just simply yes or no. Did I have a headache that day? yes or no. You know I don’t need a scale for that for it to be relevant. Having a clear way that you’re tracking your symptoms and writing it down, will help you work through your journal. Don’t stress about this scale too much. You can keep changing and modifying this scale as you go. It has taken me a long time to come to the system that I’m currently using, because it’s always evolving. Every time I have a new journal I tweak and modify and adjust things so that they’re working a little bit more smoothly or the journal is capturing things that are more relevant to my current status.
After I have my scales page, I set up my monthly calendar so that on the left hand side, I have a list of all the symptoms and then across the top I have the date. Then in all the corresponding boxes I can rate, how things have been going. Over the course of the month, you can kind of tally up how things have gone. On the right hand side I have a section where I can summarize how things went at the end of the month. I can just count up the number of days that I had insomnia or uncontrolled pain.
Then I also have after my monthly calendar there is a sheet for each day. On the page divide two sections. The left hand section is where I keep track of things. Like what kind of major activities I have been doing that day such as whether or not I’ve been participating in social events, whether or not I worked, whether or not I was working on major projects etc. to try to keep a sense of what my expenditure of spoons was that day because that might be revealing as to why I was having flares. I also keep track of what devices I’m using and what PRN medications I’m taking. And because one of my major challenges with my chronic illness management is consistently taking my medications, I also keep track of how I’ve been doing with taking my medications. That’s all on that left hand column.
And then on the right hand section I just write my thoughts about the day. So it’s kind of just your standard journal entry where I just say “hey this is what I did, this is what’s going on in life, this is how I’m feeling.” You know, what you would normally include in a personal journal. I’ve combined my medical journal record keeping and my personal day to day journal all in one book, because I feel like it’s more convenient that way. I don’t want to tote around and keep track of more than one book.
Then the other thing that I have is what I call my “health review page” and that’s every few months. I have a page where I will go back and I will look at how I did with my various symptoms over the last few months, and I’ll just kind of summarize how I’m doing. Has my pain been well controlled? Are the number of flares about the same? Just overall, how are things going? Do I feel like I’m stable? Are my symptoms static, doing what they’ve been doing or do I feel like things are getting better or worse, and any kind of thoughts moving forward. Should I make adjustments in my treatment plans or are things, doing well? This is where I look at the information that I’ve collected and consider what it means for my treatment and management plan.
I went to online and I found different tabs that you can attach to the pages of your journal. You can get tabs that are set up so that they can mark your book with the different months, or just regular plain divider tabs. That way you can find the different sections of your journal more easily when you’re going back through for reference.
When ever I get a new journal, I will set up the journal ahead of time right out of the gate. I’ll just sit down and get it all set up so that as I’m working through the days I have the journal ready to go. That way I don’t have do a prep every day. I find it easier for myself to do it all ahead. It takes me about an hour to set up the whole journal so I feel like that one day of commitment is more reliable than me doing it every day.
That’s the kind of thing that I use personally to keep track of my own symptoms. There are a lot of people out there doing bullet journals that share their ideas. There are also a lot of people that are using medical journals. Going on Pinterest or You Tube, you can just search for journal ideas. There’s a ton of people sharing really great systems. Steal anything and everything from every system that you see. Collect the pieces to build your own system that works for you.
There’s also a lot of apps out there that can do similar things. I’m personally a pen and paper, kind of gal for a lot of this stuff just because I’ve been doing journals since I was knee high to a grasshopper. I’ve had that paper and pen habit for a long time. I just kind of expanded on a habit that was already. But do what works for you. It doesn’t matter if you use a collection of apps, a paper journal or whatever. Any kind of system that allows you to track your symptoms can help you answer the question of “are you achieving that symptom management and work life balance?” and “are things as optimal as they could be or do you need to go back to your providers and rework your care plan for better wellness?”
I hope that the kinds of things that I’m doing are things that might be useful to you. I’m always open for any kind of suggestions if you guys have systems and ideas for tracking your medical information. Do any of you already use a medical journal?
Thanks for coming and spending some time with me. I hope that you all find peace and wellness. Until we talk again, you take care of yourselves!