I am not a statistician, never have been, never will be. I deal with words and not numbers. I do believe in the power of objective statistics however. I believe they can reveal patterns. They can show strengths and weaknesses. Consequently, statistics used properly are essential.
I’ve been very teachery about having M.E. I have very carefully recorded three times a day my energy, activity and symptom levels. I have also daily recorded a specific mark out of ten for 15 symptoms. I have daily averages, weekly averages, monthly averages, percentage change month to month and across three months. I record how far I walk in both distance and time, I record how often and how long I meditate for and I record every time I take a tablet. I record all my activities and have weighted them by how much energy is needed to complete them.
I have asked every person I met from the medical profession, how do I establish my energy/ activity baseline. Each time I have received generalised advice that really has not helped. I have, therefore, been determined to establish a baseline myself and to work out a way to balance my energy expenditure and my symptom level. For months I have not succeeded. Today however represents the beginning of my third week where I have more or less achieved this.
The above image represents my last six weeks. My objective has been to create a flat line where all three sets of data (energy, activity, symptom) are at the same level. It was so exciting last night to see that I’ve almost cracked it. The last two weeks haven’t been consistently flat but I’m almost there. There are a couple of blips but I know why and they were planned in advance (a family gathering, a school theatre performance, starting to take amitriptyline).
That graph has been slowly emerging all week and so I was aware about how well I was doing. It made me even more determined to not do something silly and ruin it all.
Proof that I was doing the right thing however came when I completed my weekly symptom averages for this week. Statistics can be ridiculously dry but I found them last night so exciting. Almost all my symptoms are at their lowest level since I started keeping records in January.
The only symptom that just refuses to go down are my headaches. I have suffered from horrendous headaches for the last two weeks. My husband has come down with a cold featuring bad headaches so I’m hoping I have caught the same cold.
Every week I usually experience what is known as boom and bust. You feel good, do too much crash and burn, get Post-exertional Malaise (PEM), spend 3-4 days recovering. 16 days ago I went bust, see my earlier blog about this experience. I spent three further days recovering. This was my last experience of PEM. I have only lost 4 days out of 16 because I did too much. Before this, I could have guaranteed that I would have lost at least 8-10. Progress is being made.
This is a particularly dry blog but I think you avoid empirical evidence at your own cost. For many months I had assumed I was doing the right thing. I had assumed with no evidence that I was balancing my activity and energy sufficiently. I wonder now whether if I had started monitoring myself more carefully earlier would I have started to make progress earlier. I have had to learn that often my perceptions of how much I do a day has little to do with the reality of how much I actually do. Perception is important but not trackable or even dependable unless transformed into dry data and carefully recorded.
I use to keep written records in addition to numbers. These records detailed in words exactly what I’d done, how I felt about it etc. All of that became too much and became an activity in itself. A dreadfully boring waste of my time! Plus, how do you statistically track and graph qualitative evidence? My current system takes three minutes, three times a day.
Before I became a Head of Department in a school, I was a bit dubious about the power of data. I felt it was more important to know your students and get your teaching right. Quickly upon became Head of English, it became clear that although the quality of teaching and knowing your pupils was essential, knowing statistically where your students are as individuals, classes and cohorts helps you to guide their learning and establish whether what you are doing for your department as a whole is working.
The question is then, if it is essential for managing a department, why would data not be essential for managing an illness, especially an illness like M.E.? If I could be told that by taking x drug for y length of time, I would get better, I’m not sure I would trouble myself by data tracking. However, all M.E. patients are aware of the fact that there is no x drug or y length of time. 6 months in, I have had one half hour phone call advising me how to pace myself. I must therefore carefully manage my own activities, I must try and work out my own treatment plan.
If I work out a plan, I must keep records, otherwise how do I know my plan is working? How do I know when and how to tweak my plan? Hoping you get it right isn’t good enough for me.
So, I now have only one objective – to keep up this positive progress: I must keep my graph flat, I must avoid bust, I must carefully manage any increase in my activity levels.