Tuesday, 17 April 2018

Symptom diaries: Are they worth doing?

Every time a medical professional asks me to write a symptom diary my heart initially sinks.

The thought of having to focus on my symptoms and write them all down is just depressing and feels pointless. And it's not like writing them down is going to change anything is it!

However, they can be useful. Here are my tips for making it a useful and positive thing rather than a depressing one:

  • Record both activity (including food if it might be relevant) and symptoms.  The fact you felt rubbish on any particular day isn't very helpful. But the fact you felt rubbish the day after having to stand around a lot is helpful info.
  • Look for patterns. Good patterns as well as bad patterns - whether it's 'I seem to sleep better  if I do those exercises before bed' or '3 hours of concentrating leaves me totally splatted'!
  • Make changes based on the patterns you've spotted. If something always makes you worse, look at what you might be able to change about it that might help. If something helps, see if you can use that technique at other times too.
  • They can be words, but they can be graphs, diagrams or images too.

Graph showing my fatigue/flop levels, with the top of the page being 'fine' and the bottom 'legless drunk' (which is how my PoTS presents when bad), and along the bottom or the page the type of activity (sitting, standing, walking, chatting, eating etc) And the wibbly line of the graph shows how my symptoms are affected by things.
Things like this have helped me to realise things like that a short lie down when symptoms are bad can make a really big difference, and that talking while standing is something best avoided on all but the most fabulous of days.

And yes, I know the readability of that image is poor, but I wanted to show a real activity and symptom diary I drew. Not a 'produced for the internet' shiny perfect one. Because symptom diaries aren't going to be glossy and neat most of the time. They are real, and wobbly, and tea stained.

One of their most useful uses can be communicating with health care professionals - especially about long term hidden disabilities / invisible illnesses.

Never underestimate this use.

An HCP will have had lots of people come in saying "I'm so fatigued" - and some people mean they are tired. Or feel a bit bleh. Others will mean 'I can't function'. It's very difficult in a 10 minute consult for an HCP to work out exactly what you mean by 'pain' or 'fatigue', and exactly how much it is affecting you.

In addition, spoken words can be harder to process accurately than written words. With spoken words we seem to remember our interpretation more than the actual words used....which can be problematic.

With an activity and symptom diary, by simply handing it over you can communicate:
- exactly what effect things are having on your life
- that you haven't given up.
- your proactive self management steps (like recognising what makes you worse, and trying to tweak things to see if it helps). This is perhaps one of the most important things to communicate because when an HCP can see the patient is willing to put effort in, it motivates them to put effort in too. (Perhaps this 'shouldn't' be the case, but realistically, as human beings, this is pretty much hard-wired in)

And it does all this without you sounding like you are complaining, and in a way they can put on their notes so that section of notes is totally accurate!

A symptom diary is not a totally magic cure for all miscommunication and misunderstanding, but it can be a very helpful tool.

If you want somewhere to start, have a look at our exercise effect table - available from our website as a free download ( http://stickmancommunications.co.uk/Problematic-Exercises-form-download) or as a printed sheet (Problematic Exercises form Paper Version http://stickmancommunications.co.uk/Problematic-Exercises-form) - it's a great way to start this communication process with an HCP who wants you to exercise more at the same time as helping you find out what level of exercise actually works for you. The idea is that you write down what exercise you did and how long for/how many, and what the effect was. If the effect was too bad, you wait til you've recovered, then try a smaller amount/easier version. If it was easy, then you try more/a harder version - and keep recording what you do and how you respond.

So in conclusion, while I still don't like being asked to do a symptom diary (because it does take time and effort) I also love them for how useful they are in helping me to self manage and to communicate effectively with HCPs, and think they are well worth the hassle of completing.