'hi there... seems there are 4 main areas that we deal with with Lyme disease 1. pain 2. energy 3. emotions 4. brain am keeping a log to see how l score everyday... any comments???? hope so !!!'.
I think you've covered the main points.... maybe you could add meds (Rx & vitamins/supplements)?
Do you think there's an app or web site or some place where we can track/ monitor the primary points for 30 days and then discuss/ fine tune? I think it sounds like an interesting way to explore the overall lyme experience in a measurable way (and help us figure out a better way to present the info to non-lyme sufferers!) ;)
Hi LostGirl,
Great ideas! I do not know of any apps like you mention, but we could keep track here in this discussion? Hope you are doing well,
slmo
Hi Richard,
Good idea to keep a log. How do you score it? Is each area rated 1-5 for example? my initial thoughts are:
1) Pain- been absolutely horrible this weekend. Definitely a 'flare-up' time for me. I experience these flares approx. every 2 weeks
2) Energy- what's energy?
3) Emotions- I control these with deep breathing, and as of recently, meditation. Overall I feel dull all the time but do not have terrible mood swings. Definitely have panic attacks though several times a week.
4) Brain- comes and goes every single day. Along with 1 and 2 this is the worst of the Lyme experience.
I agree with LostGirl re meds...I don't know about other people, but my Lyme doc switches my protocol every few months...for example right now I take meds for 2 weeks then go off for 2 weeks until further notice.
Emotions are going to be hard to track, how about we try using the charts they use with kids: http://campaign.vpweb.com/1e2342fb-e30b-4f5d-889d-774098da1357/ with the faces? We could modify either of the examples on this page. It would be interesting (perhaps in "phase 2" of this endeavor?} to check the emotions of those around us in relation to our emotions (example: is my boss more demanding when I seem more sad - translation - am I being more whiney when I feel sorry for myself and that makes him more aggressive?)j.
Nor sure how to measure the brain aspects. For me, it would be the "fog" and the "tracking" abilities (tracking would include concentration and memory, while fog would include trying to put my day in order "have I taken my meds yet? What time am I supposed to leave for church? Did I turn the stove off?)
great let's keep this going...
good stuff we are on the right track keep at it
good thoughts... thanks will be putting this all together soon...
I like the chart for kids LostGirl. So we could check in weekly with one of those emotions listed?
Great ideas dkel! I do not have a smartphone so couldn't figure out the apps. I agree that neurological et al should be addressed too.
Good question... my emotions change so often (and so dramatically) I could pick different images all-day-long....!!! :)
that's 1 of the MAIN problems change... change... change... hard to cope sometimes... or most of the time...(
no smart fone here either... might have to get 1 just for this stuff...)
and so are my young grandchildren!!!!