A New Decade of ME Research: The 11th Invest in ME International ME Conference 2016
Mark Berry presents the first in a series of articles on the 11th Invest in ME International ME Conference in London ...
Discuss the article on the Forums.

Are you keeping a daily journal (sleep/pain/fatigue/etc)? If so how?

Discussion in 'General Treatment' started by VitaminK2, Jul 23, 2017.

  1. VitaminK2

    VitaminK2

    Messages:
    21
    Likes:
    11
    I've been trying to keep track of as many things as I can (diet, sleep, meds, energy, pain, thoughts, etc). But it's been a pain to consolidate everything into a easy to digest manner. Especially on worse days my brain is just extremely foggy and I get confused.

    I'm currently mainly using evernote app on desktop only. It drives me nuts when I try to use it on my phone. I also write things down in a notebook and loose printer paper. These I intend to consolidate at a later date (but I almost never due).

    In my regular journal I write with time stamps when I take my meds, eat, and any commentary I might have around that time. Then in another note I try to rate in a number scale (1-10) on my sleep, pain, sinus congestion, mental clarity, and mood.

    I think I'm just frustrated with the template I'm using or maybe its just the fatigue. It's been a pain in the butt to analyze everything. However its mainly just me feeling extremely tired everyday and a couple outlier days sprinkle in there.

    Any one else doing something similar?

    Edit: today has been a not so good day. After I posted I see a made some spelling mistakes (using due instead do). When I notice certain things like this I try to make note of it in my journal so I can look it over later to compare with other days. It's because I make frequent changes to the time I take my meds, diet, sleep time, and also adding/taking out things. My issue so far is being able to sit down and sift through everything. Maybe I just need to wait for a really good day in where I'm thinking much clearer.
     
  2. Alvin2

    Alvin2 If humans were rational...

    Messages:
    1,307
    Likes:
    3,654
    Why are you doing this?
     
  3. bspg

    bspg Plant Queen

    Messages:
    437
    Likes:
    1,536
    USA
    @VitaminK2 I use an app called Nomie for this purpose and I really like it. It's customizable to track whatever you want and you can add notes as well.

    The thing I like most about it though is that you can compare whatever you track, together in one graph. Example: compare diet w/fatigue level or sleep w/brain fog, etc. This can help you find correlations that you didn't realize before and help you see how different treatments might be affecting you.

    The only downside is it has a learning curve and takes some effort to figure out. I'd say it took me a couple hours of playing around with it to understand how to use it. That being said, its an AMAZING app (imo) and the best thing I've found for this purpose.

    There's a thread about it here that has more info and links: http://forums.phoenixrising.me/index.php?threads/nomie-tracking-app.52088/
     
    Last edited: Jul 23, 2017
    Marc_NL and JaimeS like this.
  4. *GG*

    *GG* Senior Member

    Messages:
    6,156
    Likes:
    4,762
    Concord, NH
    This sheet might help.

    GG
     

    Attached Files:

  5. JaimeS

    JaimeS Senior Member

    Messages:
    3,205
    Likes:
    11,821
    Mid-Ohio Valley, United States
    I've used OvuView! You can customize it and easily input symptoms on your phone. I have 'air hunger' there and other specific ME/CFS symptoms. I don't know if it's "the ideal thing" but it's really easy to add symptoms that typically bug you and to chart and keep track of them long-term.

    I see your profile states that you're male, but it doesn't really matter -- just input the symptoms you wish to keep track of.
     
    bspg, emsho and Marc_NL like this.
  6. hellytheelephant

    hellytheelephant Senior Member

    Messages:
    916
    Likes:
    4,638
    S W England
    I have found keeping a diary really helpful for : pacing, active pain management, knowing what I am talking about when updating Drs, keeping track of how many meds I take each day, and how many times a month I go out. It has taken 4 years to simplify it enough for my needs. It also enables me to see as symptoms worsen day by day and act to stop a crash.

    I don't have a smartphone, but doing it manually is less tiring for me anyway.

    Each day I tick off a list of meds/pain meds as I take them and I also write a score out of 10 for energy and pain for am and pm.
    Yesterday for example was 4 out of 10 for energy for am and pm, and 5 out of 10 for pain for am and pm. I also note big outings, appointments, my mental state, visitors. It is a few words at most.

    At the end of each week I update the diary. I use an A4 lined notebook with a double page spread per month.
    At the end of the month I hi-light all the days of flare up and the days I had to take opoids. I also count up how many times I have gone out.

    Without a diary I find it hard to get an overview of how I am doing.
     
    JaimeS and bspg like this.
  7. slysaint

    slysaint Senior Member

    Messages:
    2,124
    Likes:
    11,464
    There are a number of apps out there; unfortunately the first one I looked at just now when Googling:
    https://www.mytherapyapp.com/how-to-use-apps-for-fighting-chronic-fatigue-syndrome-cfs
    "The symptoms and complications of CFS can be effectively managed by a personalised treatment plan, which combines medication, graded exercise programmes and psychological counselling."
    so obviously do NOT recommend this one.

    There is a thread on PR about apps:
    http://forums.phoenixrising.me/index.php?threads/smartphone-apps-and-me-cfs.28543/
     
    JaimeS and trishrhymes like this.
  8. tudiemoore

    tudiemoore Senior Member

    Messages:
    151
    Likes:
    358
    Southeast U.S.
    I have wondered how anyone keeps track of these things.
    However, I have a notebook (can't find it, get another, etc,) to write down info, tips, whatever that I read here.

    Just the other day--"PQQ--Start with one per day, increasing to ?, then decrease."

    I just read something I think I might need sometime, covers a wide area, so I write it in whatever current notebook or scrap of paper is handy.
    Of course I could never find "PQQ" again! Most likely!

    Any super simple suggestions would be most appreciated. (Maybe I need an organizational assistant?)
     
    JaimeS likes this.
  9. hellytheelephant

    hellytheelephant Senior Member

    Messages:
    916
    Likes:
    4,638
    S W England
    If you see tips on PR that you think are handy then bookmark them so you can find them again.
    I always have a reporters notebook with me then I can track back any ideas or thoughts I have throughout the day.
     
    JaimeS, bspg and trishrhymes like this.
  10. trishrhymes

    trishrhymes Senior Member

    Messages:
    2,153
    Likes:
    17,871
    You well organised folk make me feel exhausted. Well done you, particularly @hellytheelephant - I'm so impressed.

    I've made so many attempts at this, and failed every time. I spend ages designing the perfect spreadsheet so all I have to do is put numbers or ticks and crosses in boxes, then fill it in for about 3 days, then it all goes pear shaped and I give up.

    My activity level is so limited at the moment it's just a case of muddling along doing the bare essentials, and even that's often too much.

    The thing I'm finding most helpful in stabilising my activity is wearing a fitbit - trying to keep my daily steps within my limit and keeping an eye on my pulse rate so I can try to stop if I'm way over my limit and rest before doing the next small thing. It helps a bit to keep me more aware and try to avoid having so many crashes.
     
    hellytheelephant, JaimeS and bspg like this.
  11. bspg

    bspg Plant Queen

    Messages:
    437
    Likes:
    1,536
    USA
    @trishrhymes I struggled a lot with tracking too until I found something that worked for me (Nomie). I still sometimes fall off the wagon or just don't have the energy for it.
     
    JaimeS likes this.
  12. JaimeS

    JaimeS Senior Member

    Messages:
    3,205
    Likes:
    11,821
    Mid-Ohio Valley, United States
    I kept a bullet journal for awhile, and am now doing it again. It's work, but honestly it's more work to wonder what you're supposed to be doing, when.
     
    bspg likes this.
  13. A.B.

    A.B. Senior Member

    Messages:
    3,751
    Likes:
    23,191
    I did it for a while but found it too difficult.

    I wanted to track symptoms, activities and foods.

    Inconsistently reporting things turned out to be a problem. First I find it difficult to stick with projects for a while so the quality of my reporting worsened over time. That I was tracking so many factors also demotivated me, because I knew that I would have to keep going for a long time to find correlations that weren't noise. Quality of reporting also worsened quite significantly on bad days which is exactly the time reporting needs to be accurate.

    In the end I did it for a month and then gave up, recognizing that this project needs a lot more effort than I thought it would.

    I did find that apparently cocoa is bad for me which was hardly worth the effort and something I suspected anyway.
     
    bspg and arewenearlythereyet like this.
  14. arewenearlythereyet

    arewenearlythereyet Senior Member

    Messages:
    1,478
    Likes:
    7,571
    I use a customisable tracker on my phone called T2 moodtracker. You can set single or grouped symptoms (up to 10) it has sliding scales so takes about a minute to enter data. It graphs data for you (up to a years worth of data) and you can export it to excel if you want. I just use it to keep a track of how I'm doing and group things like low potassium symptoms, brain fog, histamine, immune health etc.
     
    bspg likes this.
  15. KristenSF

    KristenSF

    Messages:
    73
    Likes:
    400
    San Francisco, CA USA
    I used to use a journal app, but the company that made it went out of business, so I copied everything into a Microsoft Word document. I started the diary in 2014, two months after I got sick. I find it invaluable for a lot of things, including tracking medications I've tried, and putting things in perspective overall.

    My only rule is that I write in it at least once a week, whether I feel like it or not. I list latest symptoms, problems, drugs, side effects, but also more general stuff about what's going on in my life and the world. I like being able to go back exactly a year ago and read how I felt and what was going on. I often have the general sensation I am getting worse and worse, but when I look back I see that isn't so. My symptoms shift, for sure, but I'm not the worst I've ever been. Out of necessity I am always coming up with new ways to accommodate my illness.

    I also use it to do quick checks to see if I've tried a drug before. I can hit the find command (control F) and type in the name of a drug, (or symptom) and see all instances of it.

    I usually end up writing in it more than once a week, especially when I have a lot going on symptom-wise. I kept a journal in my teens and twenties, so it's actually been nice picking the habit up again. But like I said, with the sickness I really find in invaluable as a reference now.
     
    Marc_NL and bspg like this.

See more popular forum discussions.

Share This Page