TheLupusSite.com banner

1 - 7 of 7 Posts

·
Registered
Joined
·
86 Posts
Discussion Starter #1
I have SLE with fibro symptoms and I know that I have to pace things yet not oversleep in order to be "as well as I can be"

I'm fairly good about getting the balance right between sleep/activity and how this affects my ability/disability, but it is hard to always get pacing correct and I often end up overdoing things.
Also my symptoms can fluctuate through out the month etc, e.g. I can have "good",days, "poor" days, " bad "days and "mental health hypo-manic" days (my mental health has lots of parallels with bi-polar except my "depression cycles" are more fatigue/pain cycles than true depressive episodes). In addition I suspect that my flares are often linked to my menstrual cycle/? PMT= good chance I will also flare.

I'd like to be able to pace things better and find a way to get more insight into how my condition varies from one day to the next from month to month etc.
In this respect I think a record of my Sleep/wake hours, the amount of activity/exercise I do, and my symptoms would be useful.

Hence I'd like to ask- does anyone know where I could get hold of a sleep/ wake diary chart or graph type thing ? Does anyone know if there are any monitoring devices available that would give an easy to use monthly record of things (sleep, activity,symptoms etc)

I think such a record would not only help me pace but also would help my insight into wether I could consider returning to employment/ do some kind of part-time voluntary work (I'm currently retired through ill health and know that full time stressful work would never be OK for me)
 

·
Registered
Joined
·
1,835 Posts
Hi:

This is an interesting idea...

I went and had a sleep study, but that was because of poor sleep patterns, it didn't matter much about activity, pain and fatigue levels...all were being affected by my inability to sleep correctly.

I have APNEA and this study detected it.

I did a quick google and found a device called FITBIT, I didn't read much into it, but it seems for about $100 you get a device that wirelessly tracks activity and sleep and journals and charts it.

I'm not sure if this helps much.

Stephanie
 

·
Registered
Joined
·
86 Posts
Discussion Starter #3
Thanks for that I may ask my GP/consultant about a sleep study (I don't think that's even been considered as my fatigue has always been attributed to my SLE/fibro)

Since my initial post & from my own research on net I think sleep centres have a thing called Actigraphs but that was not quite what I had in mind

I have found this chart for recording things but was just checking to see if there is anything more suitable so I could graph results etc to look for trends

http://www.helpguide.org/life/pdfs/sleep_diary.pdf

Perhaps I should consider asking someone if I could convert this diary to an Excell spreadsheet so I could adapt it & also make graphs etc to show up any pattern
 

·
Pollianna
Joined
·
485 Posts
wheeliefab;537091 said:
I think such a record would not only help me pace but also would help my insight into wether I could consider returning to employment/ do some kind of part-time voluntary work (I'm currently retired through ill health and know that full time stressful work would never be OK for me)
Hi Wheeliefab, can't help with the charts etc but this statement resonated with me so much. I was in a similar situation having to pace, recover, not oversleep etc and was thinking similar thoughts but that's exactly what got me into overdoing things.

I found this type of future thinking was scuppering my efforts to recover. I found that staying in the "now" was the hardest part of the illness for me. I looked ahead all of the time and always overtaxed myself. When I made the decsision to allow myself to "just be ill", not forever but gave myself permission just for now I found that something inside me relaxed and I focused on the pacing and graded excersise, not for the future but for today. Slowly my tolerance, strength etc improved. Someone once told me a wonderful thing, stop what you are doing at least 15 minutes before you get fatigued. Imagine your body is like a tank and the reserves are depleted. You have to fill up the tank but if you use up all of what you put in then it's drained again. Fill up the tank and leave 15 minutes reserve and the reserve will undoubtably rise. The analogy stayed with me and helped me stop even when I felt I could go on because I was still working to get well but by filling up my reserve.

xxP
 

·
The Other Illinois Tammy
Joined
·
1,193 Posts
wheeliefab,
Hi, it would be pretty easy to use the computer to do this chart you are wanting to do. Microsoft office would be the best and maybe the excel program. You would also be able to load it on a flash drive to show it to the doctors, etc. if you wanted to. I am not sure how your lupus works for you but my sle is unprodictable. I have tried to keep a journal and see if there is anything that sets if off more than other, or if something makes me more tired then other things. There is not connection for my sle. I guess that is what makes it so hard to handle and deal with. If cleaning my house made me extremely fatigued than someone else could do it and I would not get that fatigued any more but no luck. Ok, well this went a little longer than I wanted to sorry. I hope the idea about the microsoft works for you. I hope you are feeling well.
 

·
Registered
Joined
·
6,152 Posts
Hi there

Its an interesting chart but obviously only of worth if you can 'process' it and see if there are patterns. However I think it would be possible to 'adapt' some of the things on it to your specific needs and whatever patterns you are trying to prove/disprove. I would imagine thats the only way to go about converting it to a spreadsheet so that you could get useful graphs.

In order for it to be of use in the way you want, you would need to do some written work first and ascribe a 'value' to each circumstances.

For example if you are pre menstrual then you could give that a value of say,10, and if you have had a particularly fretful night sleeping you could give that a value of 10. You would have to subjectively decide beforehand where each value lay so that you could see if pre-menstrual = worst nights sleep or whatever.

Similarily if you have been fairly inactive one day you might want to give that a low value of, say, 3 and then see if that has an impact on your ability/disability. Of course you would have to pre-decide what values you would give to your levels of ability so that you could check if there was a correlation, say, between high activity and low ability for example.

Like I say, you would need to decide beforehand what it is you want to measure, what values you would give to each measurement and take it from there. The simpler the better. Could be fun doing it (if you like that sort of thing:wink2:)

As its now 1.48am in the morning and I have gotten all of 2 hours sleep again tonight, you can see my mind is in overdrive here! :hehe: I blame it on the current chest infection!

Best of luck and let us know how you get on

Take care
Joan:rose:
 

·
Registered
Joined
·
86 Posts
Discussion Starter #7
Thanks everyone, :)
Joandublin - yes I was thinking along similar lines eg giving marks out of 10 for fatigue level etc. When I'm in a bit better shape I'll look into developing something as I have a scientific mind so think I should be able to adapt things to my needs.

Polianna A good timely reminder for me
- I've just started with a really bad flare a few days ago (yes linked to PMT/ moon cycle) I'm physically exhausted, with terrible lower back pain, IBS playing up like crazy and my right hip feeling as if it has "clicked out of place". However I'm in so much pain and also so "wired" that I didn't get any sleep at all last night :(

Doing my best to take a quiet day and get mental and physical health back to "normal" Think I'll have to force myself to stay off computer as "writing pressure" one of my hypomanic symptoms - please tell me off if you notice me back messaging over this weekend
 
1 - 7 of 7 Posts
Top