Blog Detail

Ask Megan… Managing, Tracking and Reporting on Fatigue

31 Jan 14
Megan
, , , , , , ,
No Comments
image (c) Megan S, January 2014

image (c) Megan S, January 2014

A while ago I got an email from Claire at Living Being Doing with Chronic Fatigue Syndrome, she asked me the following question:

I’m investigating ways that people manage their fatigue, both as a record (for doctors/insurance, to measure efficacy of new treatments) and management – to make sure you don’t do too much on one day, to look at why you are more tired on certain days of the week/month/times of the day.
Do you have a chart, or diary, or list you could share with us? What format do you use?

I’d like to apologise to Claire for taking so long to reply! I’ve had other projects taking all my energetic times lately, but I’ve finally got to this…

How do I mange and track my fatigue levels to be able to see any change and/or report to my doctors?

I have a spreadsheet I use that has evolved over the past 7 months to be something manageable enough for me to keep up with and provide a reasonable level of data. This spreadsheet not only records my fatigue levels, but my pain levels and “other symptoms” levels as well.

Tracking Health

I track my Muscle Pain, Fatigue, and “Other Symptoms” levels (on a scale of 1 – 10) three times a day; when I wake up, at lunch time, and just before bed. I also rate my overall day. I’ve set the spreadsheet up so it automatically calculates the daily averages.

Rating Scales

Symptoms Scale

0 No Symptoms
1
2 Some symptoms/can be ignored
3
4 Uncomfortable symptoms/ interferes with tasks
5
6 Need relief now/interferes with concentration
7
8 Things are getting really bad now/unbearable
9
10 Worst possible situation/death imminent

 

Day ratings based on how I feel

crash can’t do anything above surviving/low level
bad minimal functionality/struggling
ok fairly functional
good functional/manageable issues
great functional/no issues

To start with I was also recording my activity levels every 30 minutes, but I found that was taking up way to much of my energy during the day.  Now, I pay attention to how my days are going and modify my daily activities based on my check-ins during the day.

So that’s it… That is how I currently manage, track and report on my health issues.

Do you have a way of managing, tracking and reporting on your health?

What tools do you use to do this?

 

No Comments

  1. Deborah January 31, 2014 at 2:58 pm

    Great system! People think they’ll remember these things, but to have the actual data is so helpful, both in tracking our own symptoms over time and for providing information to health care providers. Nice work! Thanks for sharing!

    • Megan S January 31, 2014 at 3:08 pm

      You’re welcome. 🙂

  2. someonesideaofluxury January 31, 2014 at 7:32 pm

    I like your electronic system that calculates averages for you! I’m still using the paper template I adapted from Bruce Campbell’s. My GP is always interested in it.

    • Megan S January 31, 2014 at 8:52 pm

      I definitely find online easier. I can open the spreadsheet on my tablet so it’s accessible even when I’m out.

  3. joynpain2 February 1, 2014 at 4:13 am

    I really need to do this. Pain management always wants a percentage of how much my pain is improved with my medicines. That’s a hard question to answer since I usually gauge by what I’m able and not able to do/accomplish. Maybe if I set up something like this it would answer their question better. I’ve never really learned how to do spreadsheets. Could you tell me how you get it to calculate the averages for you?

    • Megan S February 1, 2014 at 7:37 am

      It’s an excel spreadsheet so I’ve used the equations available in there. I believe the equation was “=AVG(A1,B1,C1)” where the A1,B1,C1 are the cells I’ve inputed the data in during the day. Hope that helps!

      • joynpain2 February 1, 2014 at 7:39 am

        It does. I’ll try this as soon as I catch up with all these emails! Maybe tomorrow? So don’t be surprised if I write you again. Thanks Megan!

        • Megan S February 1, 2014 at 7:50 am

          Great 🙂 Happy to help in whatever way I can.

  4. tlohuis February 1, 2014 at 11:11 am

    Great system. I really need to do something like this and I’ve tried in the past, just by writing things down and then I lose the paper or forget to do it. I don’t know much about spreadsheets, myself. Maybe I could have one of my lovely children to help me get one set up. With so many diseases and symptoms that are all over the place, this is really a great way to track all that information. Thanks for sharing, Megan.:)

    • Megan S February 1, 2014 at 11:20 am

      You’re welcome Tammy, I also have a sheet that lists my medications, the directions for taking them, who put me on them, when I started, when I stopped, why I stopped and what the side effects were.

      • ♥Renee February 1, 2014 at 12:38 pm

        Looks like im stuck with paper and a pen while I apparently try to work a spreadsheet. Thank god for google!

        • Megan S February 1, 2014 at 12:59 pm

          Google definitely helped me with setting mine up. Once it’s set up though it’s really easy to use.

  5. AddieMarie February 1, 2014 at 4:25 pm

    I have recently started using an iphone app called MySymptoms for this purpose. I have always been horrible about writing down and keeping track of symptoms…and end up having to just give my dr and average idea of what I remember going on lol. But I am liking this app because it is very detailed; you can keep track of everything from what you eat, to what meds you take when, to what symptoms you have and when. You can type in your own symptoms if you don’t like the ones they have listed, and rate them on a scale of 1-10 for each symptom. The only downside I have found is that I feel it would be very easy to miss out on life because I would be spending all of my time tracking symptoms and stuff!

    • Megan S February 1, 2014 at 4:33 pm

      I know what you mean. That’s why I’ve cut back to just tracking the key symptoms and having an ‘other’ category with somewhere I can scribble down key symptoms. Thank you for sharing your experiences with the App.

    • Claire February 11, 2014 at 2:28 pm

      Wow – might have to look into the app! thanks 🙂

  6. Claire February 11, 2014 at 2:33 pm

    thank you for putting this up! Keeping a record is one thing that I’ve struggled with for so long. I think it might be my goal for this month, to try a few different methods and see what works for me! I like the computer aspect of this one – no pieces of paper to misplace, or accidentally writing in the wrong column!!

    • Megan S February 11, 2014 at 2:41 pm

      That’s what I like about it. I hope it helps you find something that works for you. 🙂

  7. Keeping Track – A call out for management diaries | Living, Being, Doing with Chronic Fatigue Syndrome May 27, 2014 at 2:33 pm

    […] 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 […]

  8. Claire May 27, 2014 at 2:37 pm

    Hi Megan, I’m finally getting around to organising a management diary and I’ve written a blog post about it. I’ve put a link to this post in my article!
    http://livebedocfs.wordpress.com/2014/05/27/keeping-track-a-call-out-for-management-diaries/

    • Megan S May 27, 2014 at 2:53 pm

      That’s great! Just read and commented. Keep in touch Claire.

  9. Finding balance in the ever-changing landscape of chronic illness | my chronic life journey July 14, 2014 at 3:30 pm

    […] days where I have no energy at all – do seem to be getting less each month according to my records, but I still haven’t hit the right balance and I’m still struggling to do a full day of […]

%d bloggers like this: