Notes and Graphs

January 23, 2011 at 12:20 am

I agree that notes can be a helpful tool to track symptoms. When my symptom notes became too complicated, I made a chart/graph. After much thought I narrowed my symptoms down to five that were ‘real to me’ and were measurable on a scale of 1-5. To keep it simple I did it twice a day – AM & PM. Sometimes there just wasn’t a number, so I just guessed. Eventually a pattern did emerge and I was better able to adjust my day to my abilities. Other patterns became apparent as well and I began to ‘understand in my own language’. The five I chart are: Mobility, Discomfort, Strength, Inflammation, and Numbness. It took me a very long time to come up with these ~ for instance, no one ever asked me about ‘discomfort’ ~ but that’s what “I” was really feeling and I was then better able to describe ‘it’ to my doctor, nurses, family & etc. I don’t trot out the chart and show it around expecting folks to ‘understand’.

I do take other notes as well, lots of them, but they are primarily about the ‘business’ side of CIDP (insurance issues, other stuff…). I wish you all well and a speedy total re-recovery. I often call my CIDP “constant GBS”; makes sense to me.