It’s been quite awhile since I posted a chart.
I actually gave up keeping track for a couple of months at the beginning of the year. When I started, it never crossed my mind that I’d still be using them after 12 months. I just assumed I’d better by then, or at least so far along that I’d no longer need them. Didn’t turn out that way.
When I started the charts, I created them in Adobe Illustrator. It’s a graphic design program that I’m very familiar with from my day job as a Creative Director. They were relatively easy to update, but they still took a lot of time to manage and version out each month. I decided that after December 2008 it was just too much to keep up so I dropped them. However, after three months, I decided to pick ‘em up again, but with the goal of making them easier to manage even if that meant making them less pretty.
I started experimenting with organizing my data in Microsoft Excel. This is what I’ve ended up with.
I track a series of 10 different condition categories and within each category there are several symptoms — 33 as of right now. I based the categories and symptoms loosely on a questionnaire that my old LLMD gave. I rate each symptom every day on a scale of 0-10 everyday. I don’t really have a specific rating system for the scale (which I know skews the data), but, generally speaking, zero means it’s non-existent and 10 is severe enough to keep me in bed for the day. Luckily, I rarely get symptoms over seven. Generally, things seems to hover between four to six.
The beauty of Excel is that once I get the numbers in for each day, I can then cut it up any way I like. I have it set up to produce 14 different charts for me off of one table of data. If I was more adept at Excel I’d probably have more, but my knowledge of the application only goes so far. You can write complex formulas to run tasks for you automatically, but my scripting ability is poor.
Here are the different charts
1: Month to Month Comparison
This looks at averages across the categories and plots the results so that I can (hopefully) see a trends over months. As you can see, I’ve actually been using this format for four months now. Unfortunately, the trend seems to be going up instead of down. This is due in some part to a reshuffling of symptoms within the categories. I also swapped out some symptoms from my LLMD’s questionnaire that I’ve never had. With less numbers for the chart to average, some of the overall values went up.
2: Daily Symptoms
This is the chart I add my numbers into daily. It might look overwhelming, but the whole process of opening the file, adding in the data and closing it takes roughly three minutes. Sometimes I also just write them down and then enter them into the document a few days at a time. Pretty simple.
3: Daily Treatments & 4: Daily Exercise
The Daily Treatment chart has turned out to be a pretty valuable one. I use it to keep track if how well I follow my med and supplement regimen. A “Y” is for “yes” I took it that day, a “N” is for “no” I didn’t and and “S” is for I took “some” of it — basically I took it in the morning and not in the evening (or vice versa). As you can see from this chart, I haven’t been doing a very good job. A lot of the “N”s in July are because I took a break because I was herxing my ass off, and then later because my new LLMD told me to stop some meds and supps.
Daily Exercise is my favorite chart. Unfortunately, you can see that in July I was off running for a couple of weeks. I tweaked my Achilles Tendon in my left foot so I’ve been resting it and not running. You can see that I switched to the bike and have been putting in a lot miles there — though not as many as I’d like to.
I also keep track of my resting heart rate. This is something I’ll discuss in an upcoming post. It’s not as low as it use top be, but it’s still very healthy.
5: Daily Averages — Symptom Category
This is essentially the table in the second chart represented in a picture. It takes an average of each symptom category everyday and plots it in this line graph. Looking at it this way makes it easier to see trends and the over all experience I had that month.
6-15: Daily Totals — Symptom
The remaining 10 charts plot the daily results from each symptom and are organized by category.
Analyzing the results
A pretty shit month, July was. I write the overall upward trend of the month to two things. (1) stress and (2) going off my meds.
The stress comes from work and home life. I picked up a ton of freelance work in July and I’ve had a pretty tough time staying on top of it all. I had to pull a couple of late nights to meet deadlines and be really creative about how I scheduled things. Even if I had been perfectly healthy I would have had a hard time with all this, but being foggy and having trouble concentrating multiplied by the fact that I’m sometimes in a world of self-doubt about whether I can meet what’s expected of me really increases the challenge.
The home front has been a challenge too. My wife’s picked up a ton of work as well. This is all good for us as our bank account was starting to really spiral downwards, but it’s also tough on us as we deal with stress in almost the opposite manner. I get calm and she get’s frenetic and we become like magnets with matched polarities.
Our 4.5 year old daughter is also out of school and, because our schedules are so varied and crazy, she’s not in a camp or regular day-care set up. Every week we have to try and figure out what we’re doing to entertain her and who’s taking there, picking her up, watching her after wards etc. It’s insanely stressful on me and it makes it tough to manage my work, trying to be well and my over all energy level.
Hopefully, August will be better.
Thats some impressive numbers work. I think the thing that was most telling was what you said at the very end. Your life in July was stressful. Thats a huge factor on how you felt day to day. Not to mention you went off the meds….thats a tough combination. Once again, look at the positives, you have work coming in, which many people do not have. Yes..it is stressful, but far better than the stress of no work. What is your plans for meds in august? How are you going to handle the stress levels? Both important questions to look at ..as I am sure you are.
@jim… thanks. after looking at all the charts organized in a post it looks a little obsessive… which i guess it is. yeah, i think stress played a major part, but it was mostly the med switch that freaked everything out. i see my new llmd in 2 weeks. i’ll have a better sense of what’s next after that. funny thing is, i felt really good yesterday. i’ve been eating gluten-free and it seems to really be having an effect. i’ll post something more about it later.
Thanks for your blog! Sharing your unrelenting fight fuels my own – Our wellness belongs to us, so what’s wrong with obsessing over it?
I’m on a similar quest to take my life back from lyme, bartonella (and their unnamed ugly friends). Kinesio tape helped me train comfortably through my repeated bouts of achilles tendonitis and bursitis. Also, I’m finishing up 4 months with a PICC line and I’m finally out of the mud. (Yours is brain “fog”, mine felt more like “mud”.)
@noelle… thanks! how did you like kinesio tape? i’ve never used it, but I’m suffering with achilles issues now too and will try anything to keep them from becoming run-stopping injuries.
the PICC line really helped? i have a feeling that that’s where i’m headed this fall/winter. my LLMD wanted me to start it in the spring, but i couldn’t bare the idea of sitting around all summer.
Lots to digest there.
A note, the longer I have this problem, the more i realize how stress/anxiety does affect my overall wellness. No joke. I now wonder, being a Type A, how many fewer symptoms I would have had over my life….even pre-Lyme had I been more tranquilo.
I’m curious, what respiratory issues have you had? I was a little surprised to see it listed as one of the 10 categories that you follow, but then again, I don’t have Babs.
bt
@CT –
Kinesio tape:
I saw the pro volleyball women wearing kinesio, so I decided to try it. It worked! It was like a surrogate tendon and felt warm & tingly- (of the Bengay kind, not the neurological). I trained comfortably and without pain. My injury healed quickly… and I also wonder if the tape immobilized the offending bacteria so that the abx could do their thing…?
PICC line:
Yes, it quietly wiped away my attention and executive function deficits. – Satisfyingly enough that after 2 months, I asked my LLMD to give me 8 weeks longer on it bc I didn’t want to go back to where I was! The only sitting around is the 30 mins. or so that you drip the abx every day. I biked, ran, and chose to swim a little with it, too. (But didn’t lift).
Both of these things were well worth it for me. I hope you try them and have some success, too.
@Noelle…
Kinesio tape: I recall first seeing it while watching women’s volleyball too. I think I’ll give it a go if for no other reason than to have the experience. The runners I coach are always coming up with small injuries that might be helped by this. Did you get it online? Any suggestions on brands?
PICC: We’ll have to talk later about the this. I’ve been putting it off until after the fall marathon season because I couldn’t see running in hot sweaty August with a PICC.
@Bob
Anxiety: Now that I’ve stopped taking Rifampin I’m a lot better, but it’s still an issue from time to time.
Respiratory: These issues come and go and aren’t really that bad, but I think they’re Babs. The pattern matches the flow of treatment. Ironically, the chest tightness, which probably keeps a lot of people from exercising, goes away for me after a few mins of working out. It comes back later hours/days after I’m done, but it doesn’t seem to impede activity. I sometimes wonder if it’s not a neuro issue and not a physiological one.
Hi,
I’m looking for a charting system just like yours for a friend who has similar problems and I’m thinking about a bigger goal as well.
I read that you created it in Adobe Illustrator and it isn’t easy to use but then I saw you were talking about Excel. Did you do a new one in Excel? Is there anything you can share?
I am an epidemiologist and I’m thinking about the value of collecting this kind of data not just for my friend but if I collected data from lots of people with similar problems I could do a study (I’m an epidemiologist). However, the only way to do such a study would be web based and with a user friendly interface. My husband is a physical scientist and can do a lot of pattern analysis and I can do the epi. I don’t think anyone has done such a study and it could be a huge contribution.
Do you have any interest in such a project?
Thanks,
Jan
Jan… Hi. Thanks for your comment.
Yes, I initially created the charts in Adobe Illustrator, but then moved to Excel. My Excel skills are poor so even there it was a largely manual process and not something that I can easily give to someone without a lot of explanation.
I would be interested in speaking with you more about your data collection idea. With all of the requests I get for more info on my charts, I’ve had similar thoughts about creating something that others could use. Please email me through the Contact form on my site.