3 months later.

I miss you guys.

That seems like the place to start.

This is definitely the longest hiatus I have taken from writing here at my blog since I started it (coming up on 10 years ago), and it was unplanned, but pretty unavoidable.

Since my sister-in-law passed 3 months ago, I've been completely absorbed in trying to make things bearable for my brother and his kids, which basically consists of me living on their couch, making sure they don't starve (or, more likely, perish from scurvy, as their interpretation of fruits and vegetables runs more to the 'by the foot' and/or  'fry/chip' variety), pretending my 2nd major in social work 10+ years ago is an acceptable form of grief counseling, and making sure they don't live in filth. (My brother was ever the slob, and devastating grief did not make him MORE likely to pick up after himself.)

I'm not doing it on my own (there are a lot of us on the support staff) but a lot of times - when my niece is shivering her way through an anxiety attack at midnight, or my nephew is having a mini-breakdown that we're both pretending is all about school, or my brother is upstairs wailing his grief away and I can't go up and comfort him or even leave and give him privacy - it can feel like I am.

Normally, periods of emotional upheaval leave me itching to write, and this last little while was both no exception, and so much of an exception you wouldn't believe. There were times I felt as if if I didn't write, I might explode, and there were times were I felt like any words I could possibly write were too small, too insignificant, too useless. Mostly, though, I've just been too exhausted to parse any words at all.

The amount of spoons that this all takes - physically and mentally - is overwhelming. It's a 24-hours a day position, with no breaks or breathers, most times. My niece needs constant reassurance that everyone she loves is not going to just disappear, sometimes to the point of needing to be near me for hours at a stretch, constantly touching and talking and... that is not a thing I am physically capable of doing, most days, but I do it anyways.  My brother needs someone to run herd on his kids during the days he can't get out of bed, even if they're huge balls of tantruming energy, which is not in my wheelhouse, but I do it anyways. My nephew wants me to help him figure out calculus I forgot three seconds after I learned it 20 years ago, through brain fog so thick I put the controller in the refrigerator the other day. Not a great plan, but I do it anyways.

"I do it anyways" seems to be the motto right now, because shit needs doing and I'm the only one around to do it.

But this mentality (and let's face it, that's always my mentality, no matter how many times I try to change it), as you might guess, does not play well with chronic illness. I've been running on the fumes of fumes for at least two of the four months I've been here, and I keep crashing, but still have to push during the crash, because otherwise - as I previously mentioned - shit doesn't get done. And none of that stuff is optional: it's homework and 'my head hurts' and 'why isn't there any food in the house?' and three solid weeks of blizzard conditions and snow days galore. Decisions, big and small; appointments to make and cancel and try to show up at; rules to reinforce and reinforce and reinforce  - because bickering doesn't stop for migraines, and neither do dishes or meals or any of the other things that normally I would stop because it's just me and who cares, but right now it's not just me, and it doesn't stop, and that's hard.

It's all very hard, is mostly what I'm saying, and for every day I can crawl my way through without winding up in the hospital, I am super grateful.

And everybody else is on me to take care of myself better: which is a thing I want to do, a thing I know I need to do, but a thing I can't quite figure out how to do. Because asking for help is only OK if other people can provide it, and somehow everybody else is already doing the best they can here too. And I've definitely used up as much of my own reserves (ha! as if I had reserves. I had... like.... I don't know: gall? Is that a thing? I think that's the thing I mean.) as I could. I've been sicker here than I have been in years - part of it is exactly as I remember from watching these same kids as infants and toddlers, that every germ in creation is somehow called to them and then transferred to me, but another part of it is just being freaking exhausted in a way I've somehow managed to forget during (relatively) good cycles of illness.

I mean, I'm never NOT tired or sore - 20 years this past fall since that was even an option! - but I HAVE been taking care of myself and managing my illnesses for quite a while, and I've worked out all sorts of cheats to make things easier on myself, and so, I haven't had to be CONSTANTLY DOING anything for years (because I know how it wears me out, and is bad for me, and I don't do that anymore), so now, I guess I'm just remembering why. Oh yes: THIS IS THE REASON FOR ALL YOUR ADAPTATIONS, YOU FOOL. This constant exhausted feeling right here, where your brain is Swiss cheese and your white blood cells have declared themselves pacifists and your red blood cells have noped the fuck out of here, and you basically have all the energy of the lump of pillows you're trying to nest in, but you still need to get up and feed the faces of people who are still too young to manage it on their own. (Not that I don't make them do some of their own meals, but an 8-yr-old should not be in charge of feeding herself 3 meals a day, just take my word for it.)

If I've ever doubted that being a spoonie means being a warrior (and I only ever have in my own case, when it seems like the things I do are so little/adaptable in comparison to others), then those doubts are gone now. I could not be fighting any harder just to survive, and to pull these children and my brother along with me, than I am right now.

And, so, the lack of writing.

But I do feel like I'm going to explode without it, so I'm back. Even if I can't promise regularity. Even if the only thing I can promise is that when I show up, I'll have things to say.

I appreciate any of you still out there listening.

Just a little thought -

Third day, and I'm sharing a tip I've seen a few other places, but I've got a different reasoning, so I figure it's fair game.

When I mentioned on Tumblr that I was participating in NaNoWriMo, a couple of people contacted me to give encouragement, ask what I was planning to write, etc.  Given that most of what I post there is chronic illness/spoonie related, it will come as no surprise that many of these private messages came from other spoonies. During one of these conversations I mentioned that I was going to try to front-load as much writing as I could manage in the first week or so, because I will - without a doubt - 1) have low/no spoon days; 2) get sick at some point (to varying degrees of sickness, but hopefully nothing serious; 3) want to spend time doing something other than write - like eat on Thanksgiving, or spend some time with either of my November birthday-girl sisters; 4) have days when writing is just not happening or other things are much more interesting and words are stupid; or 5) days when you have other commitments and just don't see how to squeeze some writing in.

Now, I've seen this tip in relation to issues #3-5 - I won't be the only NaNo participant planning on some turkey and pumpkin pie this month, and a lot of other participants will have a ton of commitments that I do not - full-time/part-time jobs, families that they have to care for every day, travel schedules, kids hockey games they have to sit and watch and freeze at, whatever. And I'm sure we will all be faced with a day when, as happened to me last November, the sum total of our (usable) words will be the ones that are the main characters names - everything else will be a whole bunch of nonsense. (Countable nonsense, as far as word count goes, sure; but I always felt like it was almost cheating if I knew that it would never actually end up anywhere near the finished project.  But that's my inner editor at play, and she's supposed to be on vacation this month.)

But I haven't seen a lot of discussion surround issues 1 & 2, and I realize that for most NaNo participants, they won't come into play: A low energy day here or there for a non-chronically ill person, is not unheard of, certainly, but ... its a different kind of energy when you start talking about spoons.  On a day when I have no spoons, I don't mean that I might be too exhausted to write - I mean that I would (most likely) be too exhausted to eat. To take my meds. To roll from one side of the bed to another. To hold a pencil, or open up the laptop cover, let alone lift the thing that suddenly weighs more than 900lbs. To think through the brain fog enough to remember to brush my teeth after breakfast, instead of before. To try and remember if I took those pills already or if I just pictured taking them (which is why I have a whole pill system, but that's another post).

So writing anything legible or interesting, or valid (in my own opinion) on those days? Even if I keep to the daily schedule that everybody recommends, or force myself to sit in front of the computer during what is my usual writing time? It's simply not an option.  And that's ok: it's not a huge deal.  It is a knowable obstacle for me, because I have been doing this for a long time.

As for #2 and the likelihood that I will fall ill this month? Today is the 3rd of November - yesterday  I visited with three children under the age of 10, and a newborn, and some adults. Today I can't move. It is a very high pain day; and it is possible that it could turn up to flare levels, but I'm hoping it doesn't. Pain is (for the most part) something I can write through (depending) - but if those little lovely ragamuffins also brought me some nice germs, or if my visit to the hospital tomorrow where people are apparently incapable of not coughing on me results in my next bout of strep or the flu, or - god forbid - something more serious; well then, all writing bets are off. It'll be a constant game of who knows.

Which is basically how it's going to be anyways, for all of us: a giant game of "Am I going to write the words today?" "Am I going to make the daily/weekly/monthly goal?" "Can I shut my inner editor up long enough to reach 50,000 words?" - We're all in a limbo here, and that's part of the fun.

But if there's anything I learned in the years of trying to complete college and deal with chronic illness at the same time, it's to get as far ahead on the syllabus as you possibly can, while you can. So, if I can write an extra thousand words today, I'm going to. So that I'll have that little cushion there for tomorrow, if I need it. 

Because, even though the goal is to write everysingleday, and even though I am remembering that the more I write the more I want to write, November is not a month set apart from the rest of my life - it is not going to be some magical oasis of health and vitality and peace and calm and quiet, no matter how much I may wish it so.

So, that's my (completely unoriginal) piece of advice to all you other NaNo writers (and goddamn it, we are all writers!); Spoonies and non-spoonies alike, if you can - give yourself a little cushion, for the hard days, so you'll have something to fall back on.

Ahead, to day 4.