My Fourth Blog Post : The Importance Of Keeping Records

This is the fourth in my series of posts looking back on my first 10 blog posts.

This post continues the theme of looking at Still’s disease, explaining my early insight into the importance of keeping records:

One of the things that has really helped me with AOSD s keeping my own records.  Its a very difficult thing to diagnose, so the doctors need all of the help they can get.

First lets consider the major symptoms:

1. A rash.  Take photo’s, normally the rash doesn’t itch and its clearer after a hot bath.
2. A spiking temperature.  Keep a log of your temperature, if you have Still’s it will alternate between well above normal and a little below, at least once a day and sometimes twice.  I found that this pattern was not too evident when I was in in hospital because they gave me aspirin all through the day which masked the effect.  In my case its only when I left hospital and stopped the aspirin that all became clear.
3. It involves joints and muscles and it moves around.  Keep a pain chart, I had a daily chart that recorded which joints and muscles hurt and how much.  I colour coded it and produced graphs.  When my doctor looked at the pain chart and the temperature chart he said “Ah Ha AOSD”.  In my case the chart is a wild pattern, with different muscles and joints showing up in different colours most days.  However I can see that when I am getting close to a flare, its my fingers that are the early warning!
4. It maybe induced by Stress,  Keep a stress chart,  I did this as soon as I went back to work.  When I compared the stress and pain chart they were almost the same.  When I showed it to HR at work it was much easier to have a discussion about working from home and changing the type of work I do.

So in summary I have no magic cure for AOSD, but if you want a better deal from your doctors and from your employer, I think it pays to keep your own records!

This really was an important insight, I carried on keeping records for the next 11 years and I still do.  I’ve modified the tools that I use to make the process more efficient, but the basic principle still applies.  It’s especially important with a chronic condition like Still’s where you have good days and bad days and your blood tests don’t always show a correlation with symptoms.  There are two downsides to keeping records though, every day it means my focus is drawn to my symptoms and often medical practitioners frown at record keeping because reviewing the records and trying to distil their meaning takes longer than a quick response to “how are you?”.

These are the tools that I use now:

1. Each week I take a copy of my time sheet, which shows how many hours I’ve worked each day, paste it into Evernote and write a short paragraph summarising how my health has been that week, the challenges I’ve faced, whether I’ve had to compromise my health for work etc.  This weekly record has been more powerful than all the other records that I’ve kept, it’s free form nature has been particularly important.  I’ve often read through these weekly summaries from previous years to compare the-and-now and it’s very good for that.
2. Every morning I log my symptoms in the iPad Pain Tracker app.  This app is very comprehensive, tracking pain locations and severity, sleep, stress, brain fog, fatigue, overall pain intensity and much much more if you’re so inclined.  It’s very quick and easy and has excellent reporting including correlation analysis (which has never been useful for me)
3. Coach.Me which I use every day to create really simple trends for three binary metrics, whether or not I’ve had no-pain, low-pain or high-pain that day.
4. I still take photos of the rash as it’s a very concrete form of evidence
5. Every month I get a comprehensive suite of blood tests and log the results in a spread sheet, that automatically marks results in red if they are outside of the normal range.  This is way better than the log-book that the hospital provides
6. Every 6 months I update a report that I give to my specialist

In summary I still highly recommend keeping records, if you personally want to challenge your condition and work on living the best life you can despite it,  if you want a more results oriented relationship with your doctors and if you need to provide evidence to your employer, insurance or benefits provider.  All of these reasons have applied to me and the results definitely justify the 5 minutes a day it takes.

I’m writing this post in Caffe Nero, I’m still plagued by the itchy rash but I’m trying to stay positive.  It’s cold and cloudy outside but I’m dreaming of better weather in Filey (pictured) in a weeks time, although unfortunately I’m not expecting to see another seal pup like this one in October.