Methods for organizing symptom logs

I keep searching for the perfect symptom log system. You know, that log your doctor is always encouraging you to keep – th e one that keeps track of your symptoms so that you can figure out what your triggers are. The American Chronic Pain Association describes it this way:

Many things can affect your pain. These can include stress, sleep, money worries, and even the weather. The Pain Log can help you track the everyday things that have an impact on your pain. When you understand what makes your pain worse, you can begin to work on ways to reduce or deal with your pain “triggers.” The more you know about how your body reacts, the more you can be in control. And being in better control can help you be less afraid and better able to manage your pain. We encourage you to fill out a chart out at the end of each day or several times a week. You also can take your “log book” to your doctor visits. It can help you talk more openly with your healthcare provider so that together you can find ways to improve your quality of life.

Note: The American Chronic Pain Association has a sample log about halfway down their Communication Tools page.

The real beauty of such symptom logs is that they offer an objective view of what impacts your treatment. It’s no longer, “I think I started feeling better once I stopped eating gluten/meat/processed foods.” You can also see whether or not you started exercising more during that time, or if dietary changes led to weight loss. Any number of factors could lead to changes in your symptoms – wouldn’t it be nice to know for sure that it was gluten before you gave up bread forever?

I wrote about my attemps at keeping a sleep journal/log awhile ago. It worked for awhile, and it soon became fairly obvious that poor sleep (and late bedtimes) contributed to my pain levels about two days later. There seemed to be kind of a lag. Not surprisingly, I also fared better if I went to sleep before midnight. I also found that being conscious of the fact that I would be writing the results of my sleep down to be an effective motivational tool: it was like having to tell the teacher that I didn’t do my homework. Or rather, telling the computer that I didn’t get up until 11:00 am. I gained many useful insights from my sleep log, and I wish I’d managed to make it a sustainable part of my daily routine.

The longest lasting and most successful symptom log I ever kept was a simple paper mood log that my psychiatrist gave me to keep track of mood symptoms. It was created by the Depression and Bipolar Support Alliance, and its genius was that it was paper, portable, and had a built-in graph so you could track when your symptoms went up and down. (To download a printable version, try going to their “Working Towards Wellness” section. There appears to be an online version as well. Note that these are both for mood disorders.) “Hmm, when I started taking medication A, I began feeling dizzy. I should call my doctor.” It also helped to have my doctor ask me for it – again the factor of telling the doctor I didn’t do my homework. I could also see that it was impacting my treatment, as it offerred a scientific and objective means of tracking the effects of new medications on my symptoms.

The down side to keeping logs and journals is that it is time consuming. Also, how do you organize it? On paper or on the computer? What software do I use? Did I do it in the morning or the evening? What about if I’m on vacation?

I’ve come to these general conclusions about symptom logs and myself:

• The more complicated it is, the less likely I am to keep it up.
• The more time-consuming it is, the less likely I am to keep it up.
• Seeing real results from my log (insights into sleep, information for my doctor) motivates me to continue.
• Having someone – the computer or a person – “keep track” of whether or not I’ve done my log motivates me to continue.
• Symptom logs help me be an active participant in my care (both self-care and care with health care providers).

I’m trying some new log systems out. When I’ve got more details, I’ll report back.

The longest lasting and most successful symptom log I ever kept was a simple paper mood log that my psychiatrist gave me to keep track of mood symptoms. It was created by the Depression and Bipolar Support Alliance, and its genius was that it was paper, portable, and had a built-in graph so you could track when your symptoms went up and down. (To download a printable version, try going to their “Working Towards Wellness” section. There appears to be an online version as well. Note that these are both for mood disorders.) “Hmm, when I started taking medication A, I began feeling dizzy. I should call my doctor.” It also helped to have my doctor ask me for it – again the factor of telling the doctor I didn’t do my homework. I could also see that it was impacting my treatment, as it offerred a scientific and objective means of tracking the effects of new medications on my symptoms.

Listening to my body

Do you ever have one of those days where your body says, “Whoa whoa whoa, slow down! You’d better rest up or you’ll have to pay for it!”

I’m having one of those days. Yesterday I was very “productive,” in the sense that I made a lot of food and then cleaned up the kitchen. (Healthy and delicious food, I might add.) I think I would have been okay if I hadn’t made the spicy olive oil bread dip, or maybe if I hadn’t gone out afterwards to pick some friends up at the airport from their 10:30 pm flight.

Either way, my body is saying, “Rest.”

So I’m going to listen, otherwise it will get much more insistent. It’s like fibromyalgia is a voice for my mind, body, and spirit. Enough stress on any one of them, and fibromyalgia gets a wee bit louder.

“Pssst, hey, you might want to lift with your knees next time.” (back gives a twinge.)

“Okay, if you’re going to walk around a lot at least wear those inserts the doctor gave you.” (slight foot pain added to the chorus)

“Do we have to stand by the kitchen pot the entire time it’s steaming? Can’t we set a timer and go sit down?” (fatigue)

“Wait, you’re going to cook something else? Okay, but we better get to eat it once you’re done. We’re hungry.” (hunger, fatigue, and pain)

“Dishes? Okay, there are a lot of dishes. But you had better sit down and rest after the dishes, young lady, or you will be sorry.” (pain and more fatigue)

“You want to extend your curfew so you can go out tonight? Well, if you do that you have to rest tomorrow. I mean it. No going out to the museum like you wanted to.” (really, really tired, on the edge of a headache)

Every time, my body ratchets up the pain and fatigue just a notch – trying to get me to notice my limits. If I really, really don’t pay attention, it screams at me. (Or as a friend says, I have to “pay the piper.”) That’s when it takes the stern-parent-you-are-SO-grounded approach by incapacitating me for several days – or more. “You will rest, because I said so.”

Honestly, I think all people have these kind of limits. If you are “able-bodied” and you run on little sleep for a long time, your start getting cranky, have trouble driving, etc. It just takes longer for your body to scream at you. With fibro, it’s like my body is a little trigger-happy, and is VERY insistent that I know my limits.

It’s that balancing act I was talking about the other day, although maybe I’m personifying my fibromyalgia a little bit.

Winston Churchill had severe depression, which he described as his “black dog” that followed him everywhere. I suppose fibromyalgia is a little bit like that, although I picture it more as a little gremlin on my shoulder that starts gnawing on me if I don’t listen. Or maybe it’s more like my own body rebelling, and us a time-out. After all, why create this artifical divide between “my body” and “me”? That’s a subject for a different post.

Signing off now, so I can go rest.

“Who ordered this truckload of dung?”

Book recommendation time!

Yes, there is actually a book entitled Who Ordered This Truckload of Dung?. It’s by Ajahn Brahm, who is a Buddhist monk in the Thai Forest Tradition. (Ajahn Brahm was born in the United Kingdom, and now leads a monastery in Australia.) You don’t have to be a Buddhist to appreciate the book.

The book is composed of 108 stories, proverbs, experiences, and what have you. The title piece involves a story about someone who has a truckload of dung dumped on their front yard, and the choices it presents. Do they get angry, moan, wail, and do nothing about the pile of dung? Do they go through some of that and then move on? Do they go, “Well, dung makes great fertilizer for the garden…” (I won’t spoil it any further, as you really should check it out yourself.)

There’s also quite a good section on sickness, grief, and death. One story that I particularly liked was entitled, “Visiting the Sick.” Ajahn Brahm shares some useful advice:

“[The nun] explained that when all her other friends and relations came to visit her, they became so sad and miserable seeing her dying that it made her feel much worse. ‘It’s bad enough dying from cancer,’ she said, ‘that it’s too much to deal with my visitors’ emotional problems as well.’

She went on to say that I was the only friend who treated her as a person, not as someone dying; who didn’t get upset at seeing her gaunt and wasted, but instead told her jokes and made her laugh. So I told her jokes for the next hour, while she taught me how to help a friend with their death. I learned from her that when you visit someone in hospital, talk to the person and leave the doctors and nurses to talk to the sickness.”

I remember when I was dealing with some pretty serious depression. People would ask me how I was feeling, and I’d just want to scream. I was fighting nightly with thoughts of suicide, and someone wanted to know how my day went? I know that these feelings come from a good place. I just couldn’t hear that at the time.

I would add to Ajahn Brahm’s story slightly. My folks have been incredibly supportive, both emotionally and in terms of dealing with the myriad of phone calls to doctors, insurance companies, pharmacies, and all the other rigamorole that comes from being ill. If someone asks you – and they’ll probably be close enough to you that you know who you are – being an advocate/ally for a sick person is an incredibly valuable thing. Someone to research treatment options, ask your doctor about them, that sort of thing. (Caveat: Do this only if asked. Unsolicited advice probably falls in the “not helpful” category.)