[cyclecrash]

Hello,

My neuro psyc has had me doing an hourly symptom intensity tracker (0-10 scale) and also to record what I am doing all day long to see what makes me worse, etc. I have been doing this for about a month or so. She says the point is to learn to judge when I need to stop and when I can press forward with activities.

The downside of these journals though is that it makes you pay more attention to your symptoms, which could make them seem worse. She says it's probably time to stop doing the hourly tracking.

I'm very stuck in the "routine" now of doing this journal and I feel that in one way it is still helping... I have a strange problem of having one good day and thinking (and telling people) that I'm getting better. This can be bad when you're talking to disability insurance people or doctors especially because I'm not getting better it's just one day. The journal helps to show me that I'm not getting better or it also shows that I actually have slightly improved in the past month but I'm still not "better"

Do you keep journals? What kinds of things do you keep track of and do you do it hourly/daily/weekly?

Oh, the other thing she had me record daily was three things I'm grateful for that day. This can be a tough one when you are home alone and do nothing all day! Especially because you can't repeat the same thing over and over. I seem to be most grateful for other people helping me with things and for my cat

I've told her all about you guys and this group and so my "homework" for the week was to find out what you all do with your journals.

Thanks and I hope you're having a good day!

[Concussion]

I have kept journals and I have forgotten to keep journals.

I did alot of Time-flow studies in school - 3 minutes, 10 minutes, 20 minutes, 30 minutes, etc................not fun, and not really productive, for me nor actually what was being studied.

I started a journal on my injury and what was going on with me back in the beginning when my Family doc started caring for my 'migraines' - and eventually it fell by the wayside, with my forgetfulness and preoccupation with my other symptoms and problems evolution.

When I finally saw the Neurologist, he suggested a similar journalizing of the effects of the medication regimen we were dealing with and how I was doing......again my problems became the preoccupation and the evolution of the syptoms became more focus.

I decided to stop, and just write periodically when I remembered, and try to write a summary of how things were going from time to time...........its worked better, and lessened my focus on me having so many day to day symptoms..........letting me rest through things moreso day to day.

[Mark in Idaho]

I have never kept a journal. Instead, I loosely keep track of activity levels and symptom trends. I do not believe you can micro-monitor your activities and symptoms. Many times, an increase in symptoms will manifest a day after the trigger.

But, that is just my experience. Professionals tend to want to micro-monitor symptoms and functions. They often need this information to validate continued treatment. Physical Therapists do this with range of motion and pain level tracking. The ROM assessment can often exacerbate symptoms because it pushes the limits.

[rmschaver]

I kept a daily journal for months. I tracked pain and activities. I found it most helpful for listing symptoms for doctor visits and long term tracking of improvement. I felt the neurologist did not really care for it as I would have it with me constantly and had a rather long list of symptoms at each visit.

[Theta Z]

Ditto.
Same, same, same for me, rmschaver.

And yes, it greatly annoyed my neurologist as well.

I had to keep track-of-it-all in a journal, also, because my attorney indicated that I should do so. When it became tedious, onerous work for me to "keep it up" (the journal) and once I realized that the at-fault insurors were not going to be "playing fair" or settle in any way ... I did myself the great good deed of "giving it up" and was done with it. It served its purpose, but was no longer 'informative' for me, and was 'annoying' to my drs.

[xanadu00]

I've been keeping a journal now for almost a year (I didn't start until a year after my injury). I've sort of modified it over the months, but I find it helpful to keep track of (1) therapeutic activities, such as meditation and time spent with my weighted blanket; (2) stressors, such as reading time, computer time, and amount I've driven; and (3) an intensity scale for each of my symptoms.

I record everything at the end of the day, using graph paper to keep it orderly. I think the intensity scale is only somewhat helpful; what is more helpful is to record specific activities that I was/was not able to do, and the effect they had on me (e.g. was able to look outside on a sunny day without sunglasses for 10 min. without it hurting my eyes).

The activity tracking is very helpful to me, since it helps to prevent me from overdoing it too many days in a row, and it also serves as a motivator for me to engage in healthy activities such as balance exercises for rehab.

[Eowyn]

For the first about six months I kept a fairly detailed journal. This was to help validate my symptoms (i.e. show what was going on) as well as help me monitor what made them better and worse.

I tracked pain levels, medications, and general activities.

Once I improved and was able to become more active, I stopped keeping such a detailed journal. Perhaps you could back off the hour-by-hour and do more of a daily overview? The three gratitude items is a REALLY beneficial thing to keep up with.

[Kristara]

i tried to keep a daily journal and i believe the only thing it helped were my writing skills and ability to tell a story in a more captivating way lol. I only did it for a month or two and then i kept forgetting for days and would get overwhelmed by trying to recall and write my missed days to the point it just became more of a hassle and irritant than anything.
I do keep a log of my meds which I find helpful. I have a word file on my computer containing every med i've been on, the mg, how many times a day, how long i took it, the good if there was any and the side effects it caused. After 7yrs the list is pretty frickin long and when I get a new Doc they seem to be highly annoyed when i hand them a print out of it but I can't remember all that info and I got tired of docs giving me meds only to realize later i'd been on it before so now i dont BS, if I'm paying for their time I'm getting to the point quick on the first visit lol

[Klaus]

Originally Posted by cyclecrash

I have a strange problem of having one good day and thinking (and telling people) that I'm getting better. This can be bad when you're talking to disability insurance people or doctors especially because I'm not getting better it's just one day.

I used to do this all the time - as well as the disadvantages you mention it makes you look crazy because you're constantly telling people that you're much better and then telling them that you feel terrible!

I came to the conclusion that it was a sort of insight problem - early on after my injury I had no idea there was anything wrong with be despite being in a right state. I thought I had got over this after a few weeks, but I still continued telling people I was getting better or was almost better or expected to be better soon, when I had no real reason to believe anything of the sort. So I think a problem with partial insight was still there for a lot longer than I realised.

[ptcabe]

Originally Posted by xanadu00

I've been keeping a journal now for almost a year (I didn't start until a year after my injury). I've sort of modified it over the months, but I find it helpful to keep track of (1) therapeutic activities, such as meditation and time spent with my weighted blanket; (2) stressors, such as reading time, computer time, and amount I've driven; and (3) an intensity scale for each of my symptoms.

I record everything at the end of the day, using graph paper to keep it orderly. I think the intensity scale is only somewhat helpful; what is more helpful is to record specific activities that I was/was not able to do, and the effect they had on me (e.g. was able to look outside on a sunny day without sunglasses for 10 min. without it hurting my eyes).

The activity tracking is very helpful to me, since it helps to prevent me from overdoing it too many days in a row, and it also serves as a motivator for me to engage in healthy activities such as balance exercises for rehab.

Thanks to your comments my husband (2 wks post MTBI) started keeping a journal today, backdating as much as our stressed-out brains allowed. He had his first setback today after doing waaaay too much yesterday, followed by watching the least appropriate movie (Talk Radio) we could have chosen from Netflix. I'm learning to be a better caregiver, slowly but surely.