Crap crap and more crap
Feb. 11th, 2015 03:19 pm![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
jeshyrDear Dreamers,
Just getting my records in order for doctor visit tomorrow and it turns out I have had fifteen worse-than-average days in a row[*] ... no wonder I am feeling down!! In other ways of looking at the same data, it's halfway through February and I've only had 14 days that *weren't* worse-than-average since Christmas Day.
I have some guesses as to why, but still don't really know why this is happening or what to do about it. It's scary and frustrating and also very very boring because I want to DO STUFF and not lie around resting.
Also I can feel my brain working less well, Urdu progress is very slow and it's difficult to write. That's too awful to contemplate,
Just for reference, on the scale I'm using these are the definitions currently:
Severe - Lying down all day, either in waterbed or hospital bed in living room. Can manage to walk to bathroom and back when needed, but that's all.
Moderate - As above but ALSO able to have a bath or shower with reclining shower chair, OR spend some time sitting in recliner chair, OR spend an some time in reclining power wheelchair.
Mild - As above but able to do more than one of the things listed under "Moderate".
The definitions are a bit mushy - today I pushed myself to have a bath not because I felt any better but because I had to get clean or I was going to scream. Tomorrow I'll be going out in my wheelchair because I have vital medical appointments and it would be worse in the long run if I missed them ... what I'm able to do is a combination of my actual health level and how desperately I need to do stuff, so it's not the best measure, but measuring fatigue is fucking hard anyway and this is the best I can do in a reasonable amount of time.
[*] Technically this is only my fatigue measure but when I try to figure out how my overall day is, it turns out that fatigue is about 50% of that measure and all my other symptoms added together are the other 50%, so it's an adequate proxy. The alternative is copying 16 symptom measure every day into a spreadsheet[**] and doing math, so I'll take the approximation.
[**] I wish there was a decent service available now that let me get at my own bloody data. PatientsLikeMe is good for many things but letting you access your own data is NOT one of them.
PS
There should be a picture here. Last time I tried a picture it didn't post, so fingers crossed:
Just getting my records in order for doctor visit tomorrow and it turns out I have had fifteen worse-than-average days in a row[*] ... no wonder I am feeling down!! In other ways of looking at the same data, it's halfway through February and I've only had 14 days that *weren't* worse-than-average since Christmas Day.
I have some guesses as to why, but still don't really know why this is happening or what to do about it. It's scary and frustrating and also very very boring because I want to DO STUFF and not lie around resting.
Also I can feel my brain working less well, Urdu progress is very slow and it's difficult to write. That's too awful to contemplate,
Just for reference, on the scale I'm using these are the definitions currently:
Severe - Lying down all day, either in waterbed or hospital bed in living room. Can manage to walk to bathroom and back when needed, but that's all.
Moderate - As above but ALSO able to have a bath or shower with reclining shower chair, OR spend some time sitting in recliner chair, OR spend an some time in reclining power wheelchair.
Mild - As above but able to do more than one of the things listed under "Moderate".
The definitions are a bit mushy - today I pushed myself to have a bath not because I felt any better but because I had to get clean or I was going to scream. Tomorrow I'll be going out in my wheelchair because I have vital medical appointments and it would be worse in the long run if I missed them ... what I'm able to do is a combination of my actual health level and how desperately I need to do stuff, so it's not the best measure, but measuring fatigue is fucking hard anyway and this is the best I can do in a reasonable amount of time.
[*] Technically this is only my fatigue measure but when I try to figure out how my overall day is, it turns out that fatigue is about 50% of that measure and all my other symptoms added together are the other 50%, so it's an adequate proxy. The alternative is copying 16 symptom measure every day into a spreadsheet[**] and doing math, so I'll take the approximation.
[**] I wish there was a decent service available now that let me get at my own bloody data. PatientsLikeMe is good for many things but letting you access your own data is NOT one of them.
PS
There should be a picture here. Last time I tried a picture it didn't post, so fingers crossed:
no subject
Date: 2015-02-11 05:07 am (UTC)no subject
Date: 2015-02-11 07:36 am (UTC)no subject
Date: 2015-02-11 08:18 am (UTC)no subject
Date: 2015-02-12 01:36 am (UTC)<3
no subject
Date: 2015-02-12 10:30 pm (UTC)though I am so impressed by your metrics, for serious.