State of the Household Post

[mrissa]

So. I go in on Wednesday to get the results from my sleep-dep EEG. markgritter is only going to be out of town one week this month (and the peasants rejoiced!), and timprov has his own neurologist check-up stuff coming up as well.

We are not particularly well here. We are coping as best we can and trying to figure things out in the medium-term (since we don't have enough information to do long-term). There are many of you who are worse off in one dimension or another or many dimensions -- more of you, in fact, than I'd like. One of the most frustrating things about having two of us feeling long-term crappy around here is not being able to offer as much help and support for other people as I'd like. But, well, we can't. We're doing as much as we can, and I wish it was more, but I only have what I have right now.

There are very few things I can't do that I usually could do. Mostly it's a matter of costs instead. Things that used to be a normal part of the day will knock me flat if I insist on doing them. (Going out running errands at Target and the grocery nearly always requires a nap, for example.) Also, if I misjudge when I need to go home by even five minutes or so, people end up alarmed by me standing there shaking like the proverbial leaf as I get my coat on. (This is even more of a problem if I'm the driver -- and when markgritter is out of town, I'm the only driver here.) I just run out of Mris, and then there really, really is no more. It's not a matter of cutting into reserves. The reserves just aren't there. It highlights for me how much I used to rely on those reserves.

The above paragraph is not true for timprov: there are many things he just plain cannot do. This is not always predictable. If you hear that he went out for a walk and then went to dinner and even dessert with some other people, and yet we said he couldn't grab a quick coffee just the day after, both can be true. Both have been true in recent memory. But there have been days when he could not go up and down the stairs safely: in addition to normal activities often having high costs, there are times when can't means can't, not costs-too-much-energy. (Well, I suppose you could categorize "likely to fall down stairs" as "costs too much.")

One of the things this means is that any travel involving me is somewhat suspect right now, and any travel involving timprov is extremely dubious. Going to Omaha and Milwaukee wiped me out pretty thoroughly. It simply would not have been possible for timprov. And if you are in the small group of people he has offered to buy plane tickets for a visit, please please remember that he would fly to see you if he could, but he can't, so this is the only way he can cover the cost of seeing you. So those of you who asked about visits from various combinations of my household monkeys, in the random question post: not soon. markgritter is not keen to travel more when he's spending 50% of his time out of town, and timprov and I are just not physically up for that much of it.

I know that some of you are getting frustrated with me not calling or e-mailing to do stuff as much as I used to or as much as you'd like me to. I'm really sorry about that. I'm trying to see those of you I haven't seen in ages, but by the time I manage to schedule something with one such, another two or three have joined the "haven't seen in ages" club. It's a very frustrating problem, and I suppose the long-term solution is that some of you will just stop wanting to spend any time with me at all. I can't bring myself to recommend this solution, but it certainly seems practical in some ways.

The new pill I'm on does not seem to be helping with what it was supposed to help with, but we'll give it another two months.

And onwards.

Comments

[poeticalpanther.livejournal.com]

Chronic disability - of whatever sort - is, in the vernacular, a gigantic pus-covered boil of a pain in the ass.

The change from day to day - from morning to night - is one I'm all too familiar with from my back pain, while the Beloved's migraines have a similar disabling effect. I cannot imagine anyone you'd keep as a friend being really unhappy with your quietude, in the circumstances.

Thinking warm healthy thoughts for you both.

[mrissa.livejournal.com]

Thanks.

I think the problem is that some people don't end up with a consistent picture of how we're doing. It's very easy to think that the report of a bad day must have been isolated and surely people must be feeling better by now.

[brithistorian.livejournal.com]

After reading this, I'm even gladder that we got to see you this weekend, and understand better why you left as early as you did.

Hopefully you'll get some good news on Wednesday. Or at least not bad news.

[timprov.livejournal.com]

We would probably not have left any later had we been feeling OK; mrissa hasn't been able to stay up much past 10:00 since college.

[brithistorian.livejournal.com]

Okay. Well, I'm still glad we got to see you. :-)

[one-undone.livejournal.com]

I was quite thrilled that the three of you showed up at all! I know from personal experience how taxing the whole socializing thing can be when one is dealing with a medical condition. It was good to see you guys again. I'm glad you made it to the party :)

[mrissa.livejournal.com]

True, but I used to be able to push it a bit more than I can now.

[ckd]

Unfortunately, the corollary to the spoon theory is not "go to the wholesale club, buy a pallet-load of extra spoons, and distribute them to all your friends who need more spoons", dammit.

Because, y'know, I'd be doing it.

I know, a comment saying "hey, I hear you, I hope you(pl) find some way to have things be less difficult for you(pl), and I wish I could do more" isn't much. I'm sending you(pl) what good energy I can, and hoping for good news on Wednesday and, I would wish, for many other days to come.

I do appreciate knowing how you(pl) are doing, even when it's not nearly as well as I want you(pl) to be doing.

[alecaustin.livejournal.com]

ckd has said very eloquently expressed my sentiments, but at the risk of being repetitive: Best wishes. I hope things get better for you both.

It would be a simpler universe if distributing spoons to friends was all that one had to do to help them feel better and have more energy.

[mrissa.livejournal.com]

The spoon theory is not fine-grained enough for my experience. My experience is more like dollars than spoons: things that cost a quarter or even a penny have to count, because they add up, but they don't have to count as a whole dollar (spoon).

Anyway, good wishes are much appreciated.

[scottjames.livejournal.com]

My experience is more like dollars than spoons: things that cost a quarter or even a penny have to count, because they add up, but they don't have to count as a whole dollar

It's good to know your talent for complicating stuff still works.

I'm thinking 'bout you-all, even on days that I don't e-mail.

[mrissa.livejournal.com]

My talent for complicating stuff will be the last thing to go. I could lose memory, mobility, whatever -- I could be in a coma, but dammit, it would be a very complicated coma.

[scottjames.livejournal.com]

I have no doubt that this is true.

[ckd]

Perhaps it's more like the beer theory? Or maybe not. I did find that one amusing, though, and beer's even more finely-grained than currency. ("Two sips!")

The spoon theory is a massive oversimplification, but the general idea is useful, particularly for letting the temporarily-able-bodied have a better grasp of what it might be like to have an invisible disability or other similar condition.

[mrissa.livejournal.com]

Heh. Yah.

I don't know, though. The thing is, I think that the people who understand this the least are the "temporarily-able-bodied" who don't have very many projects. Because less energy than stuff to do has been my life since...um...has been my life. It's just that now it's much less energy.

I am very good at finding as many projects as I have dollars/spoons/beers/any other analogy you care to name. I am just plain good at finding projects.

[callunav.livejournal.com]

Good luck.

[cadithial.livejournal.com]

Remember, I'm on that end of town almost every weekday. If you need something, feel free to ask.

[mrissa.livejournal.com]

We do appreciate that.

[rachelmanija.livejournal.com]

I know this is a totally random question, but in case shiny things might provide some cheer... do you have pierced ears? If so, what types and/or colors of earrings do you like, and can you wear silver? (I have a gift certificate, but I don't wear much jewelry myself, even though I sell the stuff.)

I really hope the EEG results or something else prove helpful.

[mrissa.livejournal.com]

Oh, um. I do have pierced ears, and I can wear silver, and I don't wear extremely large earrings or very much of the color yellow.

None of these facts creates in you an obligation, however.

[rachelmanija.livejournal.com]

Do you prefer garnets or aquamarines?

[mrissa.livejournal.com]

Umm, goodness. Garnets.

[talimena.livejournal.com]

Best wishes to you all.

[allochthon.livejournal.com]

I too hope the EEG results are useful.
*hugs*

[mkille.livejournal.com]

Good luck, best wishes, prayers, etc. And as much fussing as you and yours are likely to find tolerable.

[greatestofnates.livejournal.com]

I hope things get better.

[buymeaclue.livejournal.com]

Having to say "I can't" is one of the most frustrating things that there is. ::loffs the Mris::