keeping a journal
 

I've been keeping a journal in the hopes of discovering new things that make my symptoms worse (or better). I have a column each day for:

--where I am in my cycle (hormonal changes seem to be a big trigger for me)
--what I ate
--what sort of activities I did that day
--any "spells" or attacks--periods of sudden overall weakness
--"other" for noting things like headaches
--a general rating on a scale of 1-10 of the severity of my symptoms

What do you think? Am I doing this right? Anything I should add?

So far I've learned the following helpful information: Don't go to WalMart; and Don't shovel. Both of these belong under the general category of "Don't be a dummy."

Abby

This is great! I do something similar and find it very helpful.

Something that might be helpful, especially if walmart bothers you due to the chemicals found there, is to keep track of known chemical exposures. I sporadicallly keep track of things like the use of household cleaners, use of soaps/shampoos/lotion and other things I put on my skin. Some of these things effect my MG and I've had to make changes in what touches my skin and what I use to clean the house.

I like your list, it is well organized and should be helpful.

Maybe add sleep - - I would log hours of (nighttime) continuous sleep - the most restful. And then naps of any duration.

Thanks, Sue. Sleep is a really good addition. I am very fortunate to be able to sleep as late as I need to--school doesn't start until nine and my kids do breakfast and morning chores on their own--but I do have wicked insomnia some nights.

The reason Wal-Mart bothers me, I think, is just that it's so big! The fish food is, like, two miles away from the frozen mozarella sticks my husband likes (not me! I don't eat that stuff! I eat steamed vegetables with lemon juice. That's what _I_ eat).

What makes Wal-Mart and the like possible for me at all is my wonderful rollator (wheeled walker) because it has a seat. I get to sit while I'm reading labels, and sit while waiting in the check-out line. I also enjoy scooting backwards along the nice smooth floors, but I got a real dirty look from a kid in a wheelchair the other day--I think she was thinking, "Come on, lady, you're a fake."

Abby

Abby, is the Walmart thing sensory overload, smells, noise, bustle, the distance it takes for shopping there (for me this is huge from giant parking lot to the distance across the store and ofcourse something like soda is in the very back of the grocery section. From car to there it would be a block for me. Seldom these days would a block be possible. Opps, I see you answered this. Boy oh boy I wish I had one of the rolators. My sister said I can have my mom's when she is done with it. I dont think she uses it anymore tho. I need to check in on that. What medicare-medicaid allows is NOT one of those. It is a sad unit.

I liked seeing your catagories. I need something like this. I am a dedicated journal person since 1983. It kinda makes me sad that it now is consumed by my health rather than other things. I just ordered 3 of my favorite journals from online Staples today for a much better price. Some papers are full of nasty chemicals just like new clothes.

Annie59

Thanks to all for the journal suggestions. I began a journal but never went into specifics, it was more generalized documentation.

I usually make a detailed list to bring to my neuro to discuss and he adds it to my medical record. I might have to switch to a more structured format.

Thanks for all the suggestions!
Rachel

Sue, Good suggestion about the sleep.

I would also include what the temperature outside was like during an activity or if you got heated up during the day doing something, even if it's just dishes.

Don't forget about emotions. Any strong emotions or stress can be a trigger too.

I hope you can figure out what might be causing these episodes.

Annie

Stella,

I think you need to add the time of day in your journal and durations of the activities.

If you have an episode, include the time and duration as well.

This is a great thread. Yes time of day and temperature would be important for me. I still recall December first when it was 42 degrees, cold wind but sunny so I went for a walk. I had not started the attempt at tanning again which gets me hot and takes me backwards, weaker. I felt that day something in my body that is wonderful and rare....Strength!!!!!!!!!!!! It just proves my point that under day to day of the usual esp summer there is improvement only getting worse even if I tried to walk , exercise because of what heat does to me. But cold weather to me feels maybe like what one feels after getting IVIG tho yet that is only an assumption.

Annie59

I haven't noticed too much about how much strength I have over the seasons, but I did notice something interesting while waiting for my car to get fixed.


In hot weather, a car's battery works very hard to keep the car running, but the heat drains a lot of power from the battery.

In contrast, cold weather works to keep the battery, the power source, at a cooler temperature, so less demands are placed on it.

In short, if you live in a hot climate, your car battery's life is greatly diminished. I guess the same can be said about our bodies. :winky:

Personally, though, I feel more tired during these past few months. Yet, I haven't been really keeping tally in regards to the seasons, as I stated.