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Tuesday, November 24, 2015

ratios and secret weapons

This is a typical spoonie fret day. You guys rarely see me go through this in public. I used it as a writing prompt to help me stay focused through my chore list.

8 a.m.

My head is an absolute whirl. I'm not sure how I'm even doing things this morning. Thank goodness for very elaborately detailed lists.

Sent this message to my doctor yesterday.

As per last visit discussion about PT for fibromyalgia possibly aggravating autoimmune flareup, I'd like to check in with lab for blood tests on SED & ANA & anything related.

So far very mild symptoms- occasional slight fever, mild nausea, hardening of muscles all over body (noted in PT notes), joint pain in knees (unrelated to PT, clicking hard in right knee), pain levels in general spiking when PT usually relieves it, fatigue & forgetfulness increasing.

Don't think it's a virus, but trending over last 2 weeks into running down & feel less functional around the house, goofier in traffic. Have been resting a lot, extra protein, hydrating, don't feel like I'm catching back up. Would like to see if I'm in a mild auto flare.

I get voice mail and have mymercy, if lab is ordered I can run in any time this week. This is not an emergency and I'm not falling on my face, but would like to plan my holiday differently if I am presenting in mild auto flare.

Also meeting a couple other people at the same clinic for a thing (holidays suck so bad for spoonies, and this one is so young), so been busting out some of today's list before I go. The #TWDLiveTweetReview snips are done, and thank goodness I have that down to a prep science as well, because I was so 'dizzy' doing it that I could barely make sense of timestamps, much less content. Not actually dizzy, just brain-dazed. All vitals are on point, I'm rockin' the good health stuff, but going down like a swallow hit with a BB gun. I've been sleeping well, but kinda worried if I fold up I'll start sleeping too much. This doesn't feel like a manic dip at all, feels like brain fail. I haven't been able to keep up my workouts this month, either, so all things considered, I'm crossing my fingers it's 'just' a depression shutdown and not a flare up. I generally swing and dodge through stuff, but I feel like I've reached the point where I'm fighting to stay coherent, oriented. Given my history, I'm probably really lucky I can actually feel the warning signs coming on. I usually just stumble into it and go through a massive shut down over holidays and sometimes find out in January or February that I've been in mild to moderate flare up the whole time.

Mild flare up for me is 1:16. I feel pretty ill by 1:32. I've been at 1:64, but it's been a few years, haven't hit that since I found out I'm diabetic and turned my life around.

Totally ignoring everything else in both families, just too overwhelmed. Been going back and fixing so many typos in this week's posts, can tell I'm having a hard time if it's taking me so long to catch them.

Focusing on the moments. Going down my lists. Keeping the headphones on.



5 p.m.

So far the SED result is coming back on the high end of normal at 18. This is why I keep an eye on that. In the old days in another health care system, it regularly stayed above 40 for years before it would come down. In the beginning (early 1990s), hovering in the 80s and 90s wasn't uncommon, saw it get up to 120 once.


By itself, SED really doesn't mean much, just that my body is stressed out. Really glad to see it this low!!! Hopefully that means I'm still doing something right. You guys nowadays haven't really seen me get very sick. Well, the guys in the old days didn't, either, because I never told anyone. (Yes, this whole time.) (No one had any idea how sick I was at MegaCon that year.)

Indicators aside (ANA could take awhile), I know I'm worn out and I'd be dumb to keep pushing it too hard, so I sent my staff home early today and took a nap after I got back from town. I'm good at revamping plans. Some of today gets piled onto tomorrow, but the big stuff is DONE and OUTA THE WAY, huzzah! The only thing left to actually clean now is the kitchen, and that'll get done as the food starts coming together. Food is easy, I was ~born~ fooding.

I can tell I'd better stop now and call it a night. I'm sharing this so a few people who know what I really go through won't worry. Still here, just wiped out and probably going to bed pretty quick. Also, to spoonie lurkers having it way rougher and here it is holidays- {{{hugs}}}

This has been my push song all day, well, basically most of this week already.


I'm gonna really super push it and psyche up with my old push before I go to bed so I'll be ready to leap out in the morning. You'd be amazed how well this works, it's like a mini meditation focus. When things get hard it's vital to visualize being strong and winning. Escapism is my secret weapon.


We can do this, guys.

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