Keeping Track Of The Day To Day Changes....

[scarfgirl]

After a fight discussion with my hubbie I realized I need to keep a journal of my health so I can keep an eye out for trends and also better see the big picture. I've tried in the past to keep a diary but it was too easy to forget about.

I had thought to do a blog, because that way friends and family would know how I was doing w/o having to constantly ask and because others would remind me when I stopped posting. However, I've never been able to pull that off either for the following reasons:

1) Posting about nothing but my day to day health issues gets depressing so I stop.

2) Posting about things besides my health makes me feel narcissistic so I stop.

3) Friends and family don't really get what a blog is and think I'm doing it to avoid talking to them.

4) Letting other people read my journal feels like an invasion or privacy--even if I don't write about anything private--so I tend to not tell people about it thus defeating the purpose altogether.

So, I wanted to know what others did to keep track of it all. Also, if you do have some sort of online journal would you mind sharing it with me so I can get a feel for how that's supposed to work?

[Dizzy Dame]

Hi Kexia,

On blogger.com, if you start a blog you can make it private, so only people you choose can read it. All you have to do is go to the settings panel and select "permissions" then click the little button that says "only people I choose". I have a blog with blogger.com and it's really easy to navigate. I've posted a link below for you for blogger in case you want to give it a try:

www.blogger.com/signup.g

Good luck!

-Lauren

[pickledfairy]

Hi Kexia,

I keep track of my orthostatic vitals twice a day and then at the end of the day I jot down what I did that day as well as what symptoms I have been experiencing. I have a blood pressure program on my computer that allows me to keep these readings as well as average them, put them in charts and it has a space where you can write comments daily. I print it off and bring it to my doctor's appointments. I also keep them in a word document so when I am not in Boston I can send them to him via email.

It is a lot of work sometimes, but it has worked for me especially since I am 3 hours away from my physician and we are still trying to find a combination of meds that works for me.

He loves the reports and says that it helps him to see what my day to day life is like. I have to admit that I am a bit anal retentive, and love to have everything in order and this helps me to feel that way in this craziness that is my life now that i am dealing with autonomic neuropathy and POTS!

Good luck finding what works for you.

Sheridan

[kmpower]

Hi. I have never been able to journal before now, but I have made it a habit and am so glad. When I started having symptoms and doctors didn't believe or know what to make of my own observations (about eating, posture, etc.), I started writing it down.

I didn't make any rules for myself, skipped bad days, etc. It would keep me company and give me something to do when I had insomnia from the beta blocker or the pounding and it gave me something to do in doctors' waiting rooms.

I am going on my second year and when I have a bad week I can look at the same week last year and see that, yes, specific weather does have an effect, or, this year I will not overeat at Christmas to save myself for the next day, etc., etc. I am much more relaxed as l learn about my vital statistic patterns and ranges.

Writing is easier than blogging for me. I can take my little notebook (I am on the 4th one now) anywhere I go and posture is not important.

Do it. You will learn much.

OLL

[Sunfish]

i love to write but don't journal as much as i used to because of where i'm at (or not at) physically. though i might share a passage or a thought from it with close friends/family at times, largely this is something that's personal for me. it's not what i use for health "data" per se but rather for me. i would still do it more if i had more energies &/or privacy. i don't do well getting interrupted when journaling so it's harding now that i don't live alone &/or need others for so many activities of daily living.

i've been sick for a long time now for varying degrees. at times i have been VERY anal about keeping track of vitals, symptoms & food intake on a day-to-day basis, etc. it has been helpful at times but it's really not anymore, at least not on an ongoing daily basis. my docs all agree (though that doesn't mean it's the case for everyone).

that said, i still have a medical journal/notebook (small so it's always with me, & has a pocket where updated lists of my meds & docs are) that i use for notes before/during/after appointments, writing down particularly unusual/different symptoms patterns, etc. i take vitals when i'm particularly worse than my "norm" just to get an idea of how things correspond and i track things more (vitals as well as how i'm feeling) when i start or stop a med. i guess i've just sort of felt it out over the years and have a system that maintains something concrete without it making my ill-health more of an issue than it already is.

i've also started a website with the intention of keeping friends & family "in the loop" with where i'm at both b/c my family & i simply can't keep everyone up to speed with everything, we can't keep track of who knows what etc. and perhaps even more importantly i don't like the conversations i do have with people to be entirely about playing catch up about my medical situation. so while it may seem like a website makes a big deal of the medical, it sort of seems like it allows more for other things to enter into conversation & relationships more b/c people can read it on their own time.

i just posted my website in late october after my mom had written/sent an email update over the summer and it has been really well received. i've even had a few neat things come from it such as my former grad school advisor using it in a course she teaches on chronic illness.

i haven't kept up with it as frequently as i would have liked so thus far my updates have been few in number and long in length, though i never intended for the site to be a day-to-day tracking of my health but rather an overview of "highlights" for people. i do some "thinking out loud" about a few things, i.e. illness during the holidays, but mostly it's a means of relaying information. while i know some html programming myself, i decided to use a user-friendly site known as freewebs. the link to my site is below (in my signature) so of course feel free to peruse it.

hope this helps,

melissa

[ode_to_fantasy]

I keep a health journal...I just started it this past month recently because I felt bad about talking about it in my regular blog (it made me feel like I was whining all the time). I find it's much easier than keeping a handwritten journal and such, but then, I'm on the computer all the time. :-P

Here's the link to my journal if you wanted to get a feel of what it's like.

[scarfgirl]

You gals don't find the health journal depressing?

I think I'm pretty good about handling the ups and down of my illnesses, but writing about it daily always gets me down.

Maybe if I made a chart or symptoms list, something where I could just fill in blanks instead of trying to put my illness into words? Anyone have anything like that?

Thanks for all the advice so far. I love your journal, ode_to_fantasy, it looks a lot like my diary attempts. I feel less like a freak now. Thanks.

[jenwclark]

I go through fits and starts of journaling, but I find it difficult to go back and extract useful information out of it. I've also tried using a chart to keep track of symptoms, but I found that most days all the important info ended up crammed into the "comments" space. But I've found 2 other systems that more or less work for me.

My current one is a 4x6 notebook, with one page for each day. I make a note of what time I get up, and I list my activities for the day. This gives me a good measure of my energy level. I write down symptoms in red, exercise in green, and whatever vitals I'm recording (e.g. first morning BP) in gold. I try to keep it in chronological order so I can see connections between activities and symptoms. It doesn't have all the info that would be useful, but it frequently answers my questions, and I've been able to stick with it for a couple of years now.

Before that, I would make similar notes on my wall calendar, again with the different colored pens. The colors make it easier to pick out the relevant bits quickly, and they also make it more fun, so I'm more likely to actually do it.