Tossed and turned all night, while intermittently reading my book. There is a wrapper of a protein bar next to my bed but I hardly remember eating it. Lots of dreams, mostly angst filled but not bad like some nights. Didn’t wake up until 2, but sent some emails AND mailed a package through the USPS, so that’s something. Fatigue wasn’t terrible today, head/face pain didn’t get bad until an hour ago. I guess I give today a…. a 6? I don’t know, I suspect the longer I do this the easier I will be able to gauge how the day was– the point mostly is to provide a context. When I feel good I hardly remember how I felt the day before. Even if it was really bad. When I feel bad I don’t know how bad it is until I feel worse or better. It’s a little strange sometimes but I think this will get easier. Also I’ll talk a lot less. I mostly just want a photographic/condensed snapshot of my individual day for 150 days. It’s February 15th, 2017. I’ve been telling myself I would do this for a long time, but different things have held me back. Fear mostly, that it wouldn’t make sense. That people might not “buy” my assessment of a day through a number–you really develop validation issues when you’ve had ME for this long jeesh. It’s all the doubt you confront– across so many forms , it adds up. Then I figured first that I never have to show this to anyone and it’s more a of personal experiment anyway. And secondly, even if other people were to doubt my ability to score my day, why should I care? Thats on them. Doubters will doubt regardless, and this isn’t really for or about them. Funny to let the people who scare and discourage me, actually keep me from doing things I want on my own. It’s like the definition of defeat! I’ve already made my myself pretty vulnerable on the 25pillsaday blog, and I don’t think this leaves me any more bare than I’ve already become. So now that I’ve given myself a pep talk, I’ll get to reading and then to sleep. My book is a bit stupid but not enough for me to quit.
But ok, just to emphasize the method for everyone– right now that is me, I will take one photo a day, and give myself a score of 1-10 summing up how I felt on the whole health wise. I realize there are roughly 200 subtypes that could use to individually score specifics, and then take an average of those numbers to round out a score. But who has that kind of time? In fact I do but I’m not gonna do it. I’ll just consider this number as general in nature and as a sum averaging my pain, weakness, functionality, cognitive alertness, general sleep quality from night before, amount of medicine needed to control symptoms, and level of outside help I needed. That seems a bit obnoxiously vast I know, but somehow I think by inckuding one photo, it will help to convey the overall tone of the day, with a numerical score and a few notes, my general wellbeing played out across a certain amount of time should be more simply deduced and provide some light on how I’m actually doing. Because like my ability to edit and gauge my own writing, I have no idea how I feel anymore. How am I doing? Better than yesterday, but shittier than 2 days ago. Definitely better than this time last year when I was so weak that rolling over in bed was literally painful in the amount of exhaustion it created– in the costliness of it. Everything I did felt like a mean interruption to get over with as quickly as possible so I could lay down again. Same month a year later? A whole different world. So this is an extremely basic experiment I guess, and maybe just more of a personal record keeping so that I can see how mecfs behaves over time and how the things I do or don’t do every day tie into my health daily and overall. I’m starting simple. Who knows if anything will come of it. But I promised myself I’d stop talking myself out of ideas I have: I’ve got a huge pile of them written on heavy stock notecards from my old job. They’re piling up, and I guess I’ll never know what they could do or how badly they might fail, until I first give them a chance. So, here it is: idea #457. Or something like that.
100 Days of M.E. 