Fighting Sleep, and Losing

How embarrassing.

Lately I keep catching myself dozing off during the day. No, wait, I don't catch myself dozing off; I catch myself waking up after I obviously dozed off, head nodding, jaw sagging, oh, sorry, was I snoring? It's bad enough when I'm by myself, just sitting with my laptop in the afternoon. It's mortifying when I'm with Scarecrow and Tuffy in the evening, reading a book or watching a movie. The other evening we were watching a Dr. Who DVD, the final episode of the season, and I woke up at the very end with no idea what happened. Audio books are a disaster. At least with a regular  book, if you fall asleep, you can pick up at the page where you left off. If you fall asleep when you're listening to an audio book, it just keeps right on going and figuring out where you were when you fell asleep is a real pain.

It's such a stereotypically old lady thing to do. I remember being impatient with my grandmother, or my dad, or my mom, when they'd fall asleep watching TV. Scarecrow's dad would fall asleep in the middle of a conversation, practically.

Digression: Scarecrow's dad used to teach at a junior college. When he had an evening class, it was his habit to curl up underneath his desk for a nap in the afternoon. Seriously. Scarecrow's dad could take a nap anywhere. Anyway, on one occasion, an instructor with whom he shared the office was meeting with a prospective student and his parents. As they discussed the merits of the program, they heard an assortment of waking-up noises and Scarecrow's dad emerged from underneath the desk. I love that story. End of digression.

I was such a little snot. There is painful poetic justice in finding myself doing the same thing that once provoked my scorn and ridicule.

It could be an MS thing. Lately I've been really stiff. Any movement entails serious isometrics. It's hard work, and it makes me tired. Maybe it's that. Or maybe it's just getting old. Either way, I don't like it. So, should I try to do something about it? If so, what?

Really, other than the old lady stereotype, what's the harm in falling asleep during the day? It's not like there's anything I particularly need to get done. Why do I need to stay awake, anyway? Mostly, during the day, I'm just trying to find ways to entertain myself. If I'm tired, maybe I should just sleep. That much less time to try and fill. Choosing this option seems kind of nutty, but I'm not sure I know why.

OK, if I don't want to doze off in my chair, what are my options?

The obvious thing to try would be to get more sleep, or better sleep, at night. My schedule here is pretty much tied to Scarecrow's since he has to dump me into bed at night, turn me over from time to time, and haul me out in the morning. I suppose we could give this some thought.

I could explore chemical options. I already take drugs for fatigue, stiffness, nerve pain, depression, and bladder control. After much fiddling, we've got the drugs and dosages balanced so that everything kind of works. Do I want to risk bringing down this house of cards to stay awake through Dr. Who?

Well, it was the last episode of season.

Timing Is Everything

Those annoying highly-effective people tell us to arrange our schedule so we take on our most demanding tasks at the time of day when we're most capable. That always sounded like a good idea to me. There are tasks that require focus and attention, and those I can do on autopilot. Of course, when I had a day job, I often wound up spending my most effective time of day sitting in a meeting, or working on a task I could do on autopilot, its priority inappropriately elevated by an imminent deadline. Still, ordering my to-do list by the time of day I could most effectively accomplish a particular task always sounded like a really good idea, even if I never actually managed to do it.

These days, the time of day determines not so much whether I can do a task well, but whether I can manage it at all. You'd think I'd get it by now. Things I can do easily (relatively speaking) mid-morning will be difficult or impossible in the late afternoon. If I put something off to later in the day, even if I really really really mean to get to it, it ain't gonna happen.

In the middle of the morning, most days, the pharmaceutical soup that determines my outlook and energy level predictably has me feeling as cheerful and positive as I'm likely to get. My physical function is as good as it's likely to be all day. Living in the moment doesn't seem so bad. Late afternoon of the same day can be a very bad place. I'm probably stiff and surly and everything is way too hard and I'm f&%king tired of this sh!t. This is not a moment in which I want to spend a whole lot of time, thankyouverymuch.

At a good time of the morning on a good day, when I'm full of energy and purpose and everything seems relatively easy, I still put off tasks to the afternoon even though I know, rationally, that when the time comes, I probably won't be able to do them. I just can't seem to not do that.

The closest I can come to adapting to the drastic difference in what I can do between the good part and bad part of the day is to consciously set my status by the best part of the best time of day. I need to take note of a moment during the day when life is good and I can do stuff and I'm glad to be alive. I need to be able to go back to that moment during the part of the day when things can look very dark and it can be hard to remember that life is good and I'm glad to be alive.

This all sounds embarrassingly new-agey, not to mention whiny and self indulgent, and I'm not sure what my point was, if I had one. And Dragon Naturally Speaking just crashed. Twice. So I guess I'm done.

Pecked to Death By Ducks

On days like today, I wonder how I ever managed to get any real work done when I had a day job. There are a bunch of tasks that I need to do something about but can't actually finish, so they don't go away. I need to keep all the balls in the air, remember where I'm at on each task, and what I need to do next. My to-do list (my heroic but inevitably futile attempt to keep cats herded and ducks in a row) looks like acronym soup: ING, LTD, FAFSA, IRS, LoC... and sounds like a recipe for disaster. I'm getting pretty darned whiny about it.

Most of these tasks aren't even interesting or fun. One that's a little out of the ordinary involves calling the power company to tell them my bill is too low. According to them, we have used no natural gas for the past two months. None. Imagine that. Since we have an on-demand water heater and a daughter who doesn't get out of the shower until she runs out of hot water, this seems unlikely to me.

After several weekends of nonstop shoveling, Scarecrow and Tuffy have laid bare the entire living room and dining room floor. We kept more junk than we probably should have, but in our determination to make our belongings fit in the available space, we got rid of a lot of stuff, too. There is one item, however, that has us stumped. Where do we put the passenger seat from the van? It doesn't look that big when it's in the car, but it sits on a riser to accommodate the lowered floor, and when you take it out of it's natural habitat it's ginormous. It needs to be someplace relatively clean, relatively dry, and vermin-free (whippets excepted). We don't have a basement or garage. The seat is too heavy and awkward to haul up the narrow pull-down stairs to the unfinished attic-y space. This being Seattle, the carport and outdoor shed are too damp. It's currently looming over the rest of the furniture in our front room. Bareit thinks it's wonderful.

Assuming we can figure out something to do with the stupid seat, the final step in the remodel-that-wouldn't-die will be getting moved into new office. I jumped the gun a little, putting up a sign I displayed prominently in my office before I retired. I still like it.

Springtime in February

We must be having some other place's weather; blue skies, sunshine, the flowering trees getting ready to do their stuff. This is just wrong. It's obviously a mistake. February in Seattle is rainy, chilly, damp, and gray. Mostly gray. Even after living here for 15 years I'm suspicious of spring weather in the middle of February. I fear the bulbs emerging from the soil so early are doomed. I've been permanently scarred by Michigan snowstorms at the end of April. You can't trust this weather. It can't last.

But so what?

The demented whippet is racing madly around the yard, flying through the dog door and into the house with muddy feet, and back out into the yard, sounding like a one-dogpower freight train as he thunders across the deck. Ernie has found a patch of sun. He's trying to get a tan. They're not worried about how long it's going to last. They're enjoying it now. It's good enough for them.

It's good enough for me. I saw a pair of bald eagles out my window this morning. Tomorrow morning I'll bundle up and have coffee outdoors. It may not last, but I'll enjoy it while it does. I didn't want to do my taxes anyway.

Some greyhound friends are planning a walk around Green Lake on the first day of spring. Ironically, it takes forever to make the 3 mile walk with a bunch of greyhounds because so many people stop us with questions, and we talk up greyhound adoption. I'm looking forward to it.

Even if spring is not here yet, for real, it will be here eventually. I'm looking forward to it.

Burger Butt's Birthday

Ernie is 12 years old today. Twelve is not remarkably old for a greyhound, but it's getting up there. He's a little creaky getting up and down, his hind legs are sometimes wobbly, he sleeps more than he used to, and being as how he's a greyhound and greyhounds are world-class sleepers anyway, that means he sleeps a lot. But he's doing OK, considering.

He's had a tough year. Last January his buddy, Iris, died suddenly of a stroke. Then he broke his tail, and had to have it amputated. Twice he's had surgery to remove benign tumors from his thigh, leaving a gnarly-looking scar and saddling him with the name Burger Butt. (OK, I'm the only one who calls him that, but still. It's undignified.) And rather than adopting another laid-back greyhound buddy to keep him company and challenge him to some serious competitive napping, we inflicted a two-year-old whippet on him; a whippet who is cowardly, disrespectful, continually tries to share his bed, and steals his toys. Right out of his mouth.

It really doesn't seem right, somehow.

You shouldn't have to put up with so much, old friend, but we appreciate  that you do. Happy birthday, big guy.

Of Mice and MS

I usually use voice recognition software to interact with my computer. It's not the easy way to do it, but for me, at this point, it's easier than the alternative. For a while this morning I was stuck using only voice recognition, and was reminded that there are some things it does only awkwardly, and other things I haven't figured out how to do at all without some recourse to keyboard or mouse.

The keyboard part is easy enough. I use an on-screen keyboard program called Click-N-Type, but there are several others, both shareware and commercial, to choose from. The Windows operating system includes a rudimentary version.

OK, so now I'm relying on the mouse to be both the mouse and keyboard. If I could use a conventional mouse, I'd be all set. Of course, it's never that simple, is it?

I haven't been able to use a conventional mouse for years. I tried switching hands, reprogramming button functions, using different shapes and sizes including several trackballs. Using a mouse was somewhere between awkward and impossible. What I really needed was something I could operate by whacking it with my fist.

After limping along with a series of painfully inadequate solutions, I borrowed a Kensington Expert Mouse from the library. (The King County Library System and Washington Assistive Technology Alliance has a bunch of vision, hearing, mobility, and communication tools that they loan out, so you can try them and see how they work for you before you buy them. How cool is that? Have I mentioned that I love this library?)

I don't know why Kensington calls it a mouse when it's obviously a trackball. I guess that's why I'm not in marketing. Although it's not intended for disabled users, it looked like I might be able to operate the trackball with the heel of my hand, and click buttons by whacking them. I didn't want to spend $99 just to try it -- my hopes had been dashed by promising solutions that didn't pan out far too often for that -- but I was sure willing to check one out from the library, free for nothin'. I tried it for a couple of weeks, it worked pretty well for me, so I bought one.

It's not perfect. The two rear buttons are kind of awkward to reach without functional fingers, and the scroll ring is not as useful for me as I had hoped. The buttons aren't effectively as large as they appear, since you have to hit a fairly small area or they don't click. On the other hand, I can use it in ways I hadn't anticipated. Lately I started putting it in my lap, so I don't have to reach for it. Couldn't do that with a mouse.

I don't intend this as an advertisement for this particular mouse/trackball. Everybody has a slightly different set of abilities and limitations; this solution just happens to fit what I can do. Today. Tomorrow I might be back to looking at what's out there, trying to imagine how I might use it to do what I need to do.

I guess my point is that sometimes that works.

I'm Sure This Makes Sense to Somebody

My long-term disability insurance policy requires me to apply for SSDI, and reduces my monthly benefit by the amount I get from Social Security. OK fine, I get that. I applied for Social Security disability, I had my approval letter before my long-term disability kicked in, and they started paying benefits in December. The company that carries my disability policy ought to be pretty happy about that, because it's that much less they have to pay each month. Maybe they are. Hard to tell, with insurance companies.

Anyway, in the course of getting all this coordinated, the insurance company paid more than they owed me, and I have to pay it back. OK fine, I get that. But can they straighten this out by withholding what I owe them from my next benefit check?

Noooooo...

I have to send them a check for the amount of the overpayment. "Future benefits will be withheld until [my] full reimbursement is received."

"A pre-addressed envelope is provided for [my] convenience."

So thoughtful.

A Chat with Your Mother

Well, I guess that went about as well as could be expected.

I talked to my mom and dad on the phone this morning. In addition to the usual status updates, I meant to have a chat about their transportation problems. After years of being able to go wherever they want whenever they want, mom can't drive, and dad shouldn't. Their public transportation options are very limited. They find this frustrating. Infuriating, even. I understand that, I really do. But they can't go taking it out on my brother and his kids, who are only trying to help. The plan was to talk about all that.

I wouldn't say the conversation was a total failure. I got an opening when my dad mentioned his visit to the ophthalmologist. Apparently his vision is not appreciably worse than it was at his previous visit, which is not saying a great deal. Apparently the ophthalmologist feels dad's vision is borderline for driving, although the DMV seems to think he can see just fine. Dad told me he only drives around home, he doesn't drive at night, he doesn't drive in the rain (not reassuring -- this is Southern California, it's a desert), he only goes "over the hill" to shop at Costco (a trip of 15 miles each way over a windy canyon road). If I was waiting for the opportune moment, this was it.

"Dad," I say, "I'm with my brother and the kids on this one. I really think you need to stop driving."

He didn't get mad. This is good, we're still talking. He didn't tell me I'm an idiot, which is usually what he tells my brother. We talked about how he hates to impose on family and neighbors for rides, but acknowledged that sometimes letting people help you is a good thing for both of you. We talked about his trip to the doctor yesterday, taking dial-a-ride on the way in and the bus on the way home. It was a nice day, the trip went mostly as planned, and cost $.35. We talked about using the power scooter he bought for my mother to get to and from the bus stop, and about taking the scooter on the bus. He hadn't thought of that, and sounded intrigued by the possibility. The upshot of the conversation was that he said, in the nicest possible way, something like "I know what you think. Thanks for your concern." All in all, I am not feeling like I accomplished a great deal.

My conversation with my mother was even less helpful. When I brought up her problems getting around, she said she'd let me talk to dad about that. When I said it sounded like it was a real problem for her, she said she'd let me talk to dad about it. OK fine. I know this whole situation really makes you mad. But Ma, you've got to stop taking it out on my brother and the kids. They're just trying to help.

"How is Tuffy doing in school this quarter?"

A Chat with Your Mother. I couldn't find a clip of Peter and Lou Berryman, or Cathy Fink and Marcie Marxer, but this rendition is interesting in its own way.






A Chat With Your Mother
(Lou & Peter Berryman)

There are pirates in their fetid galleons
Daggers in their skivvies
With infected tattooed fingers
On a blunderbuss or two
Signs of scurvy in their eyes
And only mermaids on their minds
It's from them I would expect to hear
The F-word, not from you

We sit down to have a chat
It's F-word this and F-word that
I can't control how you young people
Talk to one another
But I don't wanna hear you use
That F-word with your mother

And the lumberjacks from Kodiak
Vacationing in Anchorage
Enchanted with their pine tar soup
And Caribou shampoo
With seven weeks of back pay
In their aromatic woolens
It's from them I would expect to hear
The F-word, not from you

There's the militant survivalists
With Gucci bandoleros
Taking tacky khaki walkie talkies
To the rendezvous
Trading all the latest armor
Piercing ammo information
It's from them I would expect to hear
The F-word, not from you

There are jocks who think that God himself
Is drooling in the bleachers
In a cold November downpour
With a bellyful of brew
Whose entire grasp of heaven
Has a lot to do with football
It's from them I would expect to hear
The F-word, not from you

There's unsavory musicians
With their filthy pinko lyrics
Who destroy the social fabric
And enjoy it when they do
With their groupies and addictions
And poor broken-hearted parents
It's from them I would expect to hear
The F-word, not from you

Copyright Lou and Peter Berryman

Let This Be a Lesson

When my brother calls and leaves voicemail messages on two different phones, it makes me anxious. My parents are in their late 80s, with their share of health problems. My brother and his three adult kids live close enough to help out, and they do. If something bad happened to my parents, I would hear it from him first.

So when he called this morning and left messages on two phones, I figured either my dad is in the hospital again, or my mother is driving him crazy. This time, it's option two.

My mother is a very angry woman. I guess she always has been, although I didn't realize that when I was growing up. In her defense, she has had to deal with some crappy stuff the last few years. She underwent the colon cancer torture -- chemo, radiation, surgery, perhaps not in that order. Her vision has deteriorated to the point where she's virtually blind. My dad's GI problems landed him in intensive care for almost a month. Although his recovery has been remarkable, since no one expected him to live, it has been slow.

I don't know what they expected their life would be like at this age, but I'm sure this isn't it. They live in the house they bought in, I don't know, maybe 1953? At the time it was in the middle of nowhere, but now it's the 'burbs. They have always been fiercely independent, accustomed to jumping in the car and going where they want, when they want. Mom can't drive at all now, and dad shouldn't. They live right off PCH in Southern California. This is no place for an 89-year-old man with dodgy vision and reflexes to be driving, even if he has been driving it for the last 50-some years. There is not much public transportation where they live, and let's face it, even if there were, it's never as convenient as grabbing the keys and heading out the door. My brother, who has a day job by the way, has made it clear that he will happily drop everything and take them where they need to go, if they would only ask -- but they need to ask a day in advance. I don't know if transportation issues are really the most critical thing for them, or just the most obvious target, but that's what we usually hear about. Miscommunication about transportation to a doctor's appointment, when it's often not entirely clear who misunderstood whom. Some absolutely essential item forgotten on the previous day's trip to the grocery store, that can't possibly wait for my brother to bring it by after work. It's always something.

Suggestions that this is just the way it is, and it's never going to go back to the way it was before, just make them mad. That's OK. I don't see the sense in it, but if they want to be mad about things they can't change, it's OK. But they take it out on the people who are trying to help them. That's not OK.

Two things have come out of this. The first is that I'm about to have the "You Think You've Got It Bad" chat with my mother, and I'm going to win. I've never talked about my MS symptoms with my parents because, well, what would be the point? They can't fix them, it would just make them feel bad, and they have their own health problems to deal with. But Ma, if you think you are put upon because you can't grab the car keys and go get your nails done, imagine what it's like to sit at your desk with a piece of paper in front of you, and not be able to move it. My brother is doing the best he can to come up with solutions that will work for you. Don't beat him up because he can't turn back the clock.

The other thing is that I must remember not to take out my frustrations on the people who help me. I understand the temptation to do this, believe me I do. My mom is not a bad person, but she is setting me a very ugly example.

Is That a Question You Really Want to Ask?

There are questions you shouldn't ask unless you're really sure you want to hear the answer. You know the kind I mean:

"How much worse can it be?"

"What else can go wrong?"

"Could this be any more confusing?"

Really. You don't want to know.

As I struggle to keep my power chair from plowing through our newly sheetrocked and painted wall, there are questions I'm tempted to ask my neurologist when next we meet.

What will I still be able to do this time next year?

What will I be capable of next month? Next week?

What is going to happen to me?

That's right up there with, "Do these pants make my butt look big?"

I won't ask, of course. My neurologist is very knowledgeable, but these are questions for which I know she has no answers. And even if she did, I'm pretty sure I wouldn't want to hear them.

"There is no time but the present."
-- Terry Pratchett
-- A Thief of Time

A Welcome Anticlimax

I was all set for an argument. For three months I've been more-or-less happily paying $266 for COBRA continuation insurance coverage, with the ARRA subsidy covering 65% of the cost. Then, browsing around the website for the company that administers the coverage, I see that next month my premium is going up to almost $800. Obviously a mistake -- in December legislation extended the ARRA subsidy to 15 months, and I'm only three months in -- but getting these mistakes straightened out is never easy. Are you kidding? Near as I can tell, this is a company that handles red tape for insurance companies! So I went into this loaded for bear. You know how you get? You've been over and over the argument in your head at three in the morning, getting wittier each time. (Am I really the only one who does this?) I was ready.

It doesn't help that the recent legislation has generated a lot of calls, so I get to wait on hold. Not all that long, truth be told, but still. A cheerful representative, who sounds like she can't possibly be old enough to solve my problem, finally answers. I give her the scoop, and brace myself for the inevitable hassle.

No problem, she explains cheerfully. It's not a mistake. The website doesn't show the subsidized premium, but your invoice will be correct. Then she asks if there's anything else she could help me with today.

No, I say. That will do it. Thanks.

An Old-Timey Groundhog Day

To commemorate Groundhog Day:



And a bonus verse:

The meat'll do to eat and then the hide'll do to wear
The meat'll do to eat and then the hide'll do to wear
The meat'll do to eat and then the hide'll do to wear
I like to say that

Old-timey music is not intellectually pretentious.

And a bonus tune, while I'm on a tear. Devil Eat The Groundhog is my current favorite old-timey tune of all time, and it just happens to have a groundhog in the title. How cool is that? Scarecrow and I used to play it for the Eclectic Cloggers, but this looks like a lot more fun. It's such a typical session at a festival. I love the way the guitar picks it up and joins in partway through. Needs banjo, though.



There are buds on the rather forlorn-looking star jasmine by our front door. It was looking so puny last fall that I wasn't sure it was going to come back this year. I'm happy to see signs of life. It blooms early and smells wonderful. Whenever the groundhog says, spring will be here eventually.