Since I'm always interested in exchanging ideas and tip for managing this illness, I thought I'd share my daily chart. It's my understanding that many of us track our daily progress in one form or another. I've spoken with several other PWME's who keep similar charts. Without it, it's hard to gauge which treatments may be helping, and which activities may cause crashes.
I'm always interested in improving my chart and sharing ideas, so I hope this will generate a discussion or exchange of ideas.
Before I post the link to my chart, a few notes:
This is not my actual chart, but a replica with the same format and categories. The 5 day's worth of health information is just made up. While I don't mind sharing most of my ME/CFS journey with the general public on this blog, I have to draw the line at this greater level of detail.
Google Documents: When I first started, I kept a chart locally on my computer. Around June of last year, someone recommended that I use Google Documents' spreadsheet format. (I think it was Grayson or Baffled?) I soon switched to Google Documents and never looked back. I can now access my chart from any computer. I don't have to take anything with me if I leave the house for a few days...as long as I'll have access to a computer. I can also provide a link to my family and they can access it from their computer.
The spreadsheet format also allows me to create instant graphs from any two or more of my columns. So, for instance, I can highlight the column rating my overall daily score, and the column rating my daily physical activity. (I measure both on a scale of 1 to 10). The program then instantly creates a graph that allows me to visually spot patterns and relationships between the two types of data. This helps me see trends and causal relationships that I wouldn't have ordinarily noticed. I can try to pinpoint where my crash threshold is.
Because of the graphing capabilities of the Google spreadsheet, I try to use numerical values, not words, whenever possible. For instance, under the column "Work Day?", instead of writing a Y or N, for Yes or No, I use 1s and 0s. This allows me to create a graph and observe, visually, how work impacts my overall daily health rating (not so far).
I'd love to hear what tips and tricks others have picked up. My sample chart is linked below:
https://docs.google.com/spreadsheet/ccc?key=0AiPMEG7bO4TNdHpwQzdGbzNkR3JUcklqTzdnYzRNTHc
Patrick,
ReplyDeleteI am curious, have you tried Oxygen Therapy?
If you can still share your Stevia Chocolate Syrup Recipe, I would very much like to have it. You can send it to tinychicoy (at) yahoo.com
Blessing and best hopes for recovery,
Tiny
Hi Tiny, I sent you the recipe. Enjoy.
DeleteI have not tried oxygen therapy. Have you? Does it help with SOB?
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ReplyDeleteThanks for posting your health chart. I had been working on my own & it's great to see what I should add. It's really easy to think of the weeks or months as "bad" & not remember that overall that month was better or try to figure out why it was worse.
ReplyDeleteSOB has been a huge issue for me (I think it's from inflammation). It's in degrees as to how bad it can get but there are times I'd swear a giant elephant was sitting on my chest & my hands/feet get ice cold. If you want to know how I do oxygen therapy to help with it, feel free to email me!
Hey Cari! It's always interesting to talk to other patients that have SOB, cause it's a major issue for me but it seems we don't all get it. I completely agree with you that it seems related to inflammation because I notice I get it when other things are inflamed too, like if my nasal passages are a little constricted.
DeleteDefinitely want to hear about the oxygen therapy. I'll email you about that later. I hope you are doing well - it's been a while since we talked. We'll have to catch up soon...
There is a company called Patientslikeme (www.patientslikeme.com) that provides great tracking tools as well as the ability to compare how you are doing with others with the same condition.
ReplyDeleteWhile I have been a member their for years, I have not been great at tracking my own things there because I found other forums had much better content. I had hoped to bring Phoenix Rising's forum and Patientslikeme (aka PLM) together by having talks with Cort Johnson and one of the founders of PLM but it never took off.
Check out their tools!
I will. Thanks for that recommendation, JT.
DeleteHi Patrick,
ReplyDeleteI love reading your blog - I've listed this post in an article I've write about management diaries.
http://livebedocfs.wordpress.com/2014/05/27/keeping-track-a-call-out-for-management-diaries/
As always you are an inspiration!
Thank so much, Claire! Great post. I loved it!
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