Keeping Track – A call out for management diaries
The income protection insurance company has asked me to fill in a daily activity diary for the next three months as part of the claims process (that has taken an entire year so far). This is vaguely insulting, but I understand that as there is a chance I could recover from this the insurance company would prefer to document my progress and then pay me retrospectively until the point they deem me to be able to work. (1) That this is a ‘potential to work’ record rather than a management tool is very evident – the diary only runs from 8-5, there is no summation of the days energy or wellbeing, there is no symptoms checklist, there is no space for reflection – what worked well, what could be done better, what caused this day to be good/bad and there is no space to record new medications or coping methods I am trying. It is not accessible as a resource to quickly track symptoms or energy progress. This document fails both as a management tool and a record of health. (2)
Despite these failings am actually glad that this has been handed to me. Keeping an activity diary is a strong part of any management plan; I have attempted to keep one several times and have been meaning to come back to it for quite some time now. Having this in front of me has inspired me to design an activity diary that will work for me. It needs to contain the information that the insurance company requires. It needs to be a management tool. It needs to be a record of my health.
Below is some information from management diaries I have kept in the past, and some links to other chronic illness bloggers that have written articles about their activity/management diaries/health records. Because I am still playing around with the format to find what will suit me, I would like to put a call out to the other chronic illness bloggers out there.
Please help me!
If you keep a record of your daily health or activities, please share your tips in the comments. Even better, write a blog article about it and paste a link in the comments section.
Any sort of information is appreciated, from an app you like, to the routine you have so you remember to actually write in it. I would also be interested to see how people use their diaries over the long run – do you take it to doctor’s appointments, do you change management strategies based on diary data, what is the diary most helpful for?
For a few days I kept a day to a page diary. I found the size of this perfect, as it could fit into a handbag for overnight stays, and if I made two columns I could use the right-hand one for symptoms. Up the top of the page I rated my management (poor, ok, good) and my energy level out of 100. I only stopped this because the insurance company’s activity diary came along.
Before my diagnosis of allergies with a chance of improvement and dysautonomia, I was trying a graded exercise program with the Active Health Clinic. These guys are really good and even though GE did not work as a cure for me their focus on management strategies was really helpful. The diary that I kept for them was focussed on pacing my activities and colour coded so I could instantly see the activities that allowed me to rest or regain energy, and medium- and high-energy activities. My goal was to pace myself so I rested periodically throughout the day, and if possible could split up the red (high-energy) activities into smaller slivers of time. Filling this out forced me to consider my actions during the day and reflect on if I had paced myself effectively.
Megan from My Chronic Life Journey is a strong advocate for invisible illnesses and her blog has a really strong sense of community. Megan kindly wrote a post about her management diary for me in her ‘Ask Megan’ section in January. (I said I’ve been meaning to do this for a while.) Megan has developed an excel spreadsheet that balances being simple enough to write in every day and yet has enough data to be a record of her health journey and provide information for pacing management. She tracks three values three times a day (muscle pain, fatigue, and ‘other symptoms’), and excel automatically calculates the averages for her.
Patrick Calvin from Quixotic – my ME blog is incredibly rigorous about keeping and analysing data from health tests and daily records. Reading his blog always inspires me to take control of my health journey through research and record-keeping. Patrick uses a Google Documents spreadsheet to keep records under the headings; overall rating, flu-like symptoms, kidney pain, shortness of breath, other symptoms, physical activity, stress, work day, diet deviations, medication/supplement changes or deviations, exercise or sauna, weight, blood pressure, body temperature, notes. This seems like a lot of information, but by assigning a numeral to each category the information becomes accessible and useful. Having one day to a line means that each column can quickly be scanned to see how your health has changed over the week or month. Google Documents is able to extrapolate graphs which Patrick has found useful, and at the end of every month he averages the numbers to track his overall progress. Here is the link to Patrick’s blog post My Daily Health Chart where you can read more and see an example – it makes much more sense when you are looking at the spreadsheet.
1. For the record I am able to work now, just not very much. I have three piano students (I give half hour lessons) and have the capacity to take on one or two more.
2. It also rather uselessly has a column for ‘Daily Activities Incomplete’. Most of the activities I do are discreet (like having a shower – once you get wet you’ve had a shower, no matter what you do or how long it takes) or open ended such as spending some time writing blog articles, cleaning, practising piano, or watching TV. There is very little I do that could be considered as ‘incomplete’ if I stopped doing it after ten minutes to go to bed. A better column would perhaps be ‘Activities I wanted to do but couldn’t’, or ‘Activities I did and then collapsed right after because I shouldn’t have done that, when will I learn’.
Update: I’ve gone through my list of symptoms to see what I should include as a ‘tick-a-box’, and what I can write under ‘other symptoms’. You can read about it here.