seventhe: (Quistis/Rydia: Yeah I Ship It)

so i've talked here a lot about fibromyalgia, and stress, and energy and chronic fatigue, and the concept of overcharging on a credit card and then having to pay the balance and interest later; it's an analogy that feels pretty close to the experience, just another way to phrase the spoon theory. I've been managing this on a microscale for the last couple years: spend all my energy at work, push off the crash until i get home, have no energy to do anything; repeat. well, it turns out this happens on the macroscale as well, as i found out last week when i finally had the first part of the breakdown i've been holding off for four years running.

i took two days off of work to manage it - yeah, i haven't even been here a month and i'm taking vacation, but they know about my health problems and are v understanding - and it was ... just ... weird

it's very overwhelming when all the bullshit you've been suppressing for four years straight decides to come due and crash down on you all at once. and it isn't over -- you can't recover from four years in ten days, you just can't.

but that's where i am, and that's what is happening, and my partner and i had an incredibly pleasant lazy weekend and he also cleaned my entire kitchen (as in, exiled me to the couch to relax while he cleaned it, which did lead to a massive meltdown on my part, but worked eventually when i fell asleep on the couch) and we went to the farmer's market and bought delicious fresh local food and veggies and fruits, so i have good motivation to eat well and take care of myself this week.

i'm very wary of what else might be behind the (cracking, breaking) dam, waiting to flood me out, but ... if i could handle those four years, i can handle whatever backlash they're gonna dish out

seventhe: (Cock: GIANT COCKFISTING)

Based on this, let's see how we did in January... For context, in January, I:
* Dealt with furnace break and repair for about 5 days
* Babysat my niece from a Thursday night to the next Monday morning
* Went to Pittsburgh with my partner to marry two of my best friends
* Got knocked on my ass for 2 days by a surprise sinus infection
* went through an absolutely horrible HR-centric clusterfuck which ended in having to terminate a previously (technically) excellent employee, which was draining

So, as much as I may not want to admit it, I didn't have as much weekend time as I would have liked. But also, I let things slip.

Let's see....

  1. Health:

    • I didn't make it to the gym at all. I meant to, but it did not happen. I need to make myself a true workout plan and stick to it.
    • I did actually eat pretty healthy (except that weekend in Pittsburgh where I said my words over lemon drop shots and we signed their marriage license making sure there was a nice beer ring on the paper) with food at home - not packing lunches yet. Also, I did clean out my fridge and pantry.
    • not sure on weight -- I had lost 5 lb, and then this morning I'd gained 5 -- I did just put my NuvaRing back in, so it may be hormonal water holding.
    • My dr and I have added a medication to my fibromyalgia treatment package (so I am now on Cymbalta, Lyrica, buproprion, buspirone, Mobic, and trazodone) and I have adjusted my supplement regimen so that I'm focusing on boosting my immune system which is at what may be an all-time low. I had the med adjustment period, but I am hopeful.
  2. Writing: I'm at 1/52 for the prompts (should be at 5/52). I did write two pieces for prompt #1 though?

  3. Art: I'm at 14/365 (should be at 31/365). It actually surprises me that I've done 14, although probably only 25% of them have been anything above the layer of crap. However, it means I should be able to do >0 arts this year - maybe I can keep up with it?

  4. Home: I haven't done this well. Although I did get the fucking furnace fixed; it's great when I can surprise the repairman because shock, I'm an engineer, and while I wouldn't necessarily start pulling out wires inside my furnace panel, I certainly know what a draft inducer blower is, and that it should not have water in it

  5. Mental: I've done OK in letting hobbies be chores. With this new medication plan I'm going through the grieving process of believing I would ever be a healthy, able-bodied person again.

  6. Work: I am taking huge steps in making it clear where my line is between assisting on a project and completing action items for it. I also had the awful situation I outlined above, which will be saved for another post.

  7. F&F: I saw my niece, and went to Pittsburgh to visit (marry) friends - with my partner, and we had an absolutely fantastic time with each other. I did ask him for support when I needed it while going through the horrible HR fiasco, and we talked a bit about where boundaries might be.

Rather than setting firm goals for February, instead I want to just pick three areas to focus in:

  1. GET TO THE GYM. THERE'S ONE RIGHT UP THE ROAD IN A DIFFERENT BUILDING ON THE WORK CAMPUS.
  2. Uncluttering. Laundry / clothes to donate is a big area of shame right now.
  3. Make up some ground on my art & writing commitments.

[EDIT] ok so I really like Markdown but there's something funny about this version of it that's making me mad

learning

Sep. 14th, 2016 11:11 pm
seventhe: (Default)

I spent today noticing how I spend my energy and, notably, what drains me. And, not surprisingly, - lot of what drains me is human interaction. HA HA HA,IM IN MIDDLE/UPPER MANAGEMENT AND DEALING WITH PEOPLE MAKES ME TIRED, isn't it ironic.

So what I'm trying to do is differentiate which interactions I can't avoid, and which ones I could try better to delegate to other people. What I've learned so far:

  • people coming to my door every 5 minutes when I'm clearly working on something and either asking me questions or giving me updates -- sadly that's part of the job, although I can try to get ppl not in my department better trained so they're not always asking me questions and/or asking my department to consider whether I really need to be updated -- but a certain part of this is inherent in the job and will never go away.

  • visitors, vendor meetings, or other forced interpersonal interactions overtaking the usual workday -- there really is a small portion of this that's required. However. I could work to develop my engineering staff so that they could be the contact point for, say, people who visit from the plants to work on a project. Which leads me to:

  • working intensely on something with other people -- this is actually the serial killer of my energy. So, this week we had a visitor from the plants to help us re-develop our MOC process and move to new software. She's incredibly knowledgeable and the whole three day visit was entirely amazingly productive. However, this sort of intense interpersonal work for hours at a time is an incredible drain on my reserves and accounts for a lot of the overcharging to my energy credit card. I put my brain into a very highly-functional state and generate incredible amounts of work, looking at big picture as well as small details - the forest and the trees - and I also watch the people I'm working with to figure out what their weaknesses are so that I know we're covering everything we need to. I'm always the one recording because I know for a fact I take the kind of notes we need to capture everything, and then I'm the one compiling what our results were and what conclusions we're going forward with. This constant, intense operation of my super smart*, psychasthenic brain leads to mental exhaustion, which translates into sapping my physical energy just to get through the day, which triggers the fibro feedback as well as the brain fog.

So -- I'm still collecting the data I need, but I'm trying to think of ways I can lessen the amount of my work time spent doing things like that. Technically managers should be leading and directing rather than doing the intense work -- not that I want to avoid doing it, but it's that kind of work ON TOP OF managerial responsibilities that's incompatible. So I obviously need a crew I can trust to do the same level of thinking. I do, so that they can conduct these development-type work meetings on their own and I just review final results.

But that's a lot to implement and I have to figure out other ways to reduce that kind of intensity -- so more thinking.

Also, this is just the first mental evaluation; I'm sure there are more serial killers to identify.

  • not being arrogant -- I'm highly intelligent in many of the areas in which I work
seventhe: (Life: stress out and die)
I had the absolute worst fibromyalgia [flareup? event? disaster? day?] last night. The pain and fog was just - the best way I can describe it is like you're on a phone call, and there's all this static, and it's breaking up sometimes -- except that you are the phone call, the pain is the static roar in your ears, and the horrible dissociative brain-grinding feeling is twitching you in and out of yourself. My knees were throbbing, my back felt skinned, it was just. horrible. When it faded, it faded into a general all-over body ache, and I was exhausted like I'd just run a marathon while on fire.

Then this morning when I got up the feeling was like when your computer crashed - and you finally get it back, but you have to reconnect everything and redo your settings? That's what it was like. I'm here, but not everything is connected right yet.

The stress of this job is not direct. I'm no longer running around getting lines fixed and vessels into service. It's the more subtle, underlying, poisonous stress, knowing that I'm now responsible for a number of things (and personnel) that were fucked up so long ago there's no 'win' any longer, there's just 'fucking make this stop being a disaster and go away'.

I need, need, need to find better ways to conserve this so very limited energy. Ever since this new job, I come home and crash. That was true before but I used to get a second wind, or even be able to do a few small chores before the crash. Not any more. I crash and that is the end of it.

I don't understand it. I'm in pain at work, always, but I can keep going, do the tasks, get things done; then it's like the second I walk into my house my brain and body go OK, PHEW, WE'RE SAFE NOW and fucking sign off for the rest of the evening.


/whiiiinnnnnnnneeeeeeeeeee

you know...

Mar. 7th, 2016 09:25 pm
seventhe: (SAZH)
Sometimes there are days where I wonder how people like, you know, live? I worked my normal day today, then went to the grocery, then came home and crashed for a bit, then got up and made a soup. And I am so fucking tired and my legs hurt and my back hurts and my brain is ready to shut off and I can't get up from this couch and I am dead and like. There are people who can do this AND go to the gym AND do laundry AND dishes after they cook AND do something brainful like pay bills or some other reasonable thing and ?????? How do people do this? What is the terrible secret? Have you all sold children or kidneys to some arcane god/dess to get these powers and if so, where do I sign up


It's hard sometimes for me to remember I have a chronic illness. Mainly because I don't want to have a chronic illness.


the soup is really fucking good tho
seventhe: (SAZH)
I hate fibro.

Yesterday I had a hugely productive day - lots of cleaning, lots of decluttering, and actually holiday decorating (I love Christmas, your fave is problematic, etc: fight me), and I went to bed at a good hour and slept well, satisfied and fully expecting another day like that one.

Instead I just slept for 3 hours, another accidental nap meant to be 15 mins, because apparently I pushed too hard yesterday and needed more rest.

Fucking hell this being crippled thing needs to stop

november

Nov. 2nd, 2015 12:34 pm
seventhe: (Snorlax: fuckin owns)
Instead of NaNoWriMo -- a concept I love and a project I fully support and would love to do, but, at this point in time imagining me writing 500K words in a month is the planet's best punchline ever -- I'm just ("just") going to try to focus on generating more content. tl;dr: post more things.

I'm trying this week to focus on limiting stimulation. Of course ideal case would be that this saves me tons of energy and results in a gigantic organizational / cleaning fit in my home along with completion of a bunch of hobby-projects (I want that scarf) but my somewhat lowered expectations are more willing to take it a week at a time and see what happens.

Fibromyalgia isn't a disease you can think of in the short-term, see: you can have a "good day" within fibro for no traceable reason at all, and likewise "bad days" can be triggered by the price of butterfly wings in China, which means you have to do a lot of scientific method to see what helps or hurts your own personal interpretation of the condition.

In other news, I'm tired and I want to go home.
seventhe: (Quistis: Bad Day)

I had a friend staying with me for the last two weeks (well - the last four days I've been on my ass with flu - the two weeks before that) as I'd hired them to do some document control work for me. It was -- interesting: of course they're one of my closest friends and we did fun friend things I love doing with them; but the older I get the more I confirm that I don't like living with folks very much. There are some benefits, like when you get a partner who does your dishes when you cook, but -- spending every night in a week hanging out with someone exhausts me so much that by the end, no matter if they're someone incredible, I can't wait for them to go the hell away and leave me the hell alone.

I am a horrible person! \o/

The thing is, this time, I've learnt something very interesting, almost by accident.

The two weeks my friend happened to be here - and coming on-site, for training and introductory work - ended up being two very rough weeks for the site, operationally, and for me, as Operations Manager. Almost every day wore me out - some days I had to go home and take naps before I could even really be coherent. I tried to explain to my friend that this just happened, on rough days, and that I thought it was the infamous "fibro fog" in my head *, and I just needed a break.

But it kept happening, over and over, almost every freaking day while they were here.

Then, one of their last days in my house, I went and took a Vicodin before collapsing on the couch and ordering something brainless. We got a drink apiece, and put on Criminal Minds (which I of course have memorized at this point so brainless really is the key answer here) and when I got up to refill my drink and get some food, I noticed that in the 30-or-so min it took for the Vic to really kick in, I suddenly felt enormously better. I mentioned this recovery to my friend and said, "Huh, I guess all I needed was a break and a pain pill."

They then mentioned that they could tell when I was having the fibro fog problems. They said my voice changed - all the energy dropped out of it; sometimes it slurred - and, my sentences were all out of order, I was using the wrong words in some places. I couldn't stay focused. A couple times I wasn't focusing on driving. They said the difference between normal-me and fog-me was so obvious to an external observer - hugely noticeable.

I was actually kind of floored, and it made me think: because I feel fibro fog all the time, right, but when it hits, but I thought ... I thought it was in my head? I thought I was ... working through it? Hiding it? I didn't think it was that big of a deal. Really, I didn't; so what if I'm a little tired and having some trouble concentrating. That happens to everyone.

Apparently, not really; not really like this, not really at all.

So that's lesson one from the two-week stay: pay more attention to fibro fog, because it is real and you aren't hiding it.

The second step came when I finally made a link between a fibro flareup / fibro fog and what causes it: I am, apparently, hypersensitive to overstimulation. It made everything click - made it all make sense. This particular friend lands high on the stimulation scale - more interaction required, for example, than settling / relaxation - which was obviously contributing to my discomfort; it also makes sense as a portion of the reason I don't like people in my house, even when I don't "have" to entertain them or feed them or care for them: they are still there; they are stimulation. When I am alone, I control my stimulation, and if I need to rewatch Criminal Minds for the three-dozenth time: well, that's pretty low stimulation.

It also explains why the fucking revolving door of my office irritates me so: I do great on days I have mainly to myself and can focus on cranking out one or two things, or on days where there's a big disaster (some stimulation!) but my entire day becomes focused only on solving that one problem. On days where I'm in my office trying to plug through my responsibilities and someone different comes in every 15 minutes ** with a new question, or problem, or even just update on something that could have waited, or whatever ... that's overstimulation kicking in.

It's why days of my job are so hard on me when I feel like they maybe shouldn't be. It's why cons always exhaust me (to the point where, while I love seeing my friends, I'm not sure they're much worth the brain fog). It's why travel is so distasteful. It's why weekends with my family feel like chores even as I enjoy them: I am - my fibro is - sensitive to overstimulation.

I've been testing and applying this finding since I realized it, in small ways, and I'm actually hoping that it's the first step in finding the work/health balance point I so desperately need to find.

SO, yeah. I'm going to be focusing on reducing stimulation at work, for the next few weeks, to see if that helps me bring any more of my energy back home. Door closed for part of every day. Soothing music, maybe. Reduce clutter in my office. And - if I start feeling fibro fog coming on - it's time to go home. I do not need anyone at work seeing me like that anymore. Apparently my sentences barely make sense.

*: [http://www.mayoclinic.org/diseases-conditions/fibromyalgia/basics/symptoms/con-20019243] || [http://www.nfra.net/fibromyalgia-fibro-fog.htm] || [http://www.fmnetnews.com/free-articles/enews-alert-samples/fibro-fog] || [http://www.healthline.com/health-slideshow/fibromyalgia-fog] || [http://www.health.com/health/condition-article/0,,20326433,00.html] || quick google search to illustrate

**: I have actually gathered data on this. My average over a 40-hr week is one interruption every 17 minutes.

confusing

Nov. 14th, 2014 01:18 pm
seventhe: (Edge/Rydia: no return)
It is probably a side effect of the drugs, the stress, or the combination of both, but for the last few weeks I've been living in a state where my dreams contain very real things to the point where I wake up and go about my day and find myself unable to remember or differentiate which things I dreamed and which actually happened.

It's stuff that rides the edge of real and possible: the costume-armor I put on to become a dragon, probably not; the confession that a semi-distant online friend had a crush on me, though: real or dream? Conversations at work, communication exchanges. These days, I dream in email, in text messages, in tumblr and phone calls.

It's a very strange feeling to be struck by a recollection or a deja-vu only to then be sidelined by the question of whether or not what I'm remembering is a dream-image or a real-one.
seventhe: (Quistis: Bad Day)
I am fighting a losing battle to make this entry about something other than work.

I had a tiny, tiny bit of a breather in October in which I realized I have forgotten what it's like to have hobbies. I consider hobbies something I'm actively involved in, even if it's minimal: things like sewing, knitting, writing, those are hobbies; watching Netflix, reading Tumblr, browsing Pinterest, those are not. (Gaming is an interesting crossover, because sometimes it actively involves me like a hobby and sometimes it tunes my brain out like a relaxing non-hobby - depends on the evening, my mood, and what I'm doing in the game.) I have - or I had - many things I considered hobbies: writing, knitting, and sewing being the ones I've been attempting to pick back up, but one can also toss in drawing, photography, blogging, house projects, even running and swimming in some lights.

I've forgotten how to have hobbies. I've lost the ability - the energy - to come home and relax via activity: my relaxing time comes strictly from inactivity, ie watching Criminal Minds reruns on Netflix, or lying on the floor. Part of this is the chronic pain, the exhaustion, the fibro fog -- when playing a video game feels like a chore, I'm pretty sure that's rock bottom. But part of it is just being so overwhelmed and overstimulated by my job that I don't have even 1% of battery left to engage in any kind of creative pursuit.

The realization came, as they do, right on the back of a mental epiphany for the future universe I have planned in which I write a series of horribly trash novels about lesbian werewolves in space. I was driving home from the seminar I gave at OU and my brain just randomly decided to figure out how the magic works in the universe, which was the push I needed to sit down at my desktop for something other than Dragon Age.

It was a very confusing feeling. I have the memory of wanting to write, of having an idea, of sitting down and generating notes and plot outlines and sometimes just spilling words, sentences, strings of thoughts and ideas filling up the screen (in abundance, sometimes, because let's face it, I can be the tl;dr of abundant wordcount) --but I had forgotten how to - saying "how to write" isn't exactly it, because sentences and ideas were still coming to mind. I had forgotten how to reach the mindset of "hobby".

I've since then been trying to reclaim it, in the interest of the genderqueer vampires who want to fly spaceships, but it's a slow process. The weirdest bit has been realizing I lost it in the first place.

When you forget how to have a hobby, I think that's a pretty good sign you need to reevaluate your life choices.
seventhe: (chocobo: hey bb)
I come home from work every day with the intention of working more. I realize this sounds dangerously pathetic or pathetically dangerous - choose one! - but it's the way I get myself out the door: go home, just bring this one thing, NOT EVERYTHING, just this one thing; working from home is much more comfortable and productive than being in the office anyway, you can have no pants on and cats get in your lap and there is always wine and music and more comfortable chairs and your wife the hot pad! don't you love your wife? DON'T YOU LOVE YOUR WIFE SEVENTHE DON'T YOU

it's a fine compromise that I am actually more than willing to make: the workload never stops, but it's much nicer working from home, PLUS it's much nicer to come home and be able to focus and do a much better job on something. it's nice to come home to an hour of catching up on email, or 45 minutes of pulling data into a report: I don't work all night; it's just small individual tasks I can get done in a low-key and helpful way.

But lately. BUT LATELY: lately, I come home and my brain just won't focus on the work. I have this report about all of the kerfuddlefuckery that has taken my plant down for four weeks already that the CEO asked me to write and I am all yes sir please let me hand-deliver this horrible news to your office, shall I seal it in my blood now or later like I actually do want to write this report and show what we are doing, what we are fixing, what we are facing - what the dumb godsbefucked people before me left to us, what I have sacrificed the last fucking six weeks to defeating which is like running a thousand goddamn marathons all at once on three hours of shitty sleep because I have been up at night worrying about my plant and my people because everything is goddamn fucked right now and -- and anyway, I want to write this report. But I get home and I open it and my brain gives this long-ass, horrible groan-sigh noise just like : reeeeeeeally, Sev, we are going to do this?

I am not going that way. No.


I'm trying, I want to, I'm in a comfy chair with the laptop on my lap right now. Come on, fucker. I just need an hour of your energy and we'll be ok.
seventhe: (Life: stress out and die)
the "great" thing about having fibro really has to be the days you are at work in so much pain you start thinking, what can I take and how many if I have to be minimally functional??

My legs are 50% bruising from climbing all around the 3rd floor of my plant this week - I've been up on scaffolds and down ladders and on top of tanks and inside vessels this week as I build a comprehensive mental picture of how fucking fucked my site is.

work is such a fucking mess right now.

I hurt a lot today and since an opium robot spinal tap is illegal, excuse me while I self-treat with wine, a cigarette, music, and lying on the floor.
seventhe: (SAZH)
I know that fibromyalgia and depression are linked - I've done *plenty* of research - and I'm now starting to wonder how much of the depression-fits I've been having are, in fact, pain-driven. ---Not to say depression isn't depression or invalidate the fact that I'm dealing with a lot of shit!! - but I know (a) I've gotten really bad at judging pain levels because I'm in constant chronic pain, and (b) I already know my mood is affected by the pain I can't sense. I just hadn't realized that *depression* could be triggered or exaggerated by the pain I can't sense. (Don't ask me why; I would've instantly suggested it to someone else, but apparently I hold my fucked-up system to fucked-up standards.)

This week I've been so achy and inflamed and sore and just painpainpainpain that I've gone back to taking a Vicodin at night. And, this week, I've caught a second wind around 8:30 during which I feel fantastically productive: I just cleaned up & vacuumed the sunroom with very little prodding. Some night this week - not the crying one, when I did not take a Vic - I just suddenly unpacked & cleaned up & sorted & threw into the laundry allllll of the shit on my floor, some of which was the suitcase from Meg's wedding.

I don't know whether it's chance; it's an offset of the depression (I've always joked with myself that I have very manic depression); or if it's a lack of underlying static-level pain giving me the extra boost. (EDIT: or maybe it's just desperation bc the house is just that messy, cries forever)

Where's my robot body??? :/ I do not like inconsistency.

painful

Mar. 17th, 2014 08:42 am
seventhe: (SAZH)
Can we. please. have. mostly-constant. temperatures. More than five days in a row.

Lady Fibromyalgia-Arthritis Johnson thanks you.


In other nonsensible news, I may be considering signing up for a triathlon. A baby triathlon - sprint triathlon category: swim 0.5 mi, bike 15 mi, run 3.1 mi. I don't know why the prospect is so appealing -- it isn't like this body is running low on pain and exhaustion and thus has to pick up some more at the triathlon training store. This is a good idea, Sev, said no one. However, the thought of doing something stupid and violent appeals to me. It's cool.
seventhe: (Cats: I LIKE THEM)
This just in: still alive.

I'm not even going to get into work here because the things people have done to me and the things I have done to people in the last six weeks belong in a horror film. One about fire and brimstone and lots and lots of swears.

More importantly, I finally got in to see the rheumatologist. I'd delayed calling because I am a busy and forgetful fuck, and then when I called there was a 6-8 week lead time on appointments, but I've finally been in to see an expert. Diagnosis re-confirmed, it's fibromyalgia. There's also some general autoimmune-disease stuff going on in there, but Fibro is an absolute.

(With fibro, there are these "trigger tender points" that are part of the diagnosis process: for people with fibro there are certain points on the body where the nerves are hypersensitive, so a normal touch feels like someone punching you directly on a bruise. Things I wasn't prepared for. The doctor was doing his check-over and hit the one on the knee and I screamed. I've always just thought bodies were sensitive there. Things I wish I'd known years ago.)

So I'm being taken off the escitalopram (anxiety med) and put on Cymbalta. The Cymbalta should be able to take the place of the Lexapro with regards to anxiety, and additionally will help deal with the fibro pain and sensations. I do get to keep my trazodone -- you can pry that sleeping pill from my cold dead fingers.

I'm on a starter dose for now, which will be increased if/as needed, and if Cymbalta doesn't work Lyrica's next.

As part of the prescription, I've also been "prescribed" exercise. The doctor says that mild (no strenuous weightlifting or sprinting intervals) exercise will help the fibro and, even though it hurts, will also help the Cymbalta work -- basically adding some exercise activity will give the drug the best chance to be effective as time goes on. As I would really like (one of) these drugs to be successful, I'm going to go back to the gym and just be gentle with myself until/as the drugs start to work, and then go from there. I'm thinking of restarting yoga in addition to that.

I am sure it won't be easy, and adding something else to my to-do list and daily schedule is moving in the absolute wrong direction, but I'm at the point where I've needed a reminder that my health is important even though it's complicated to care for.

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