What does this have to do with the purported topic of this blog?

Well, fifteen years ago, when I was first diagnosed with fibromyalgia and chronic fatigue, I made a commitment to myself: get dressed every day. I might not brush my hair; I might not even brush my teeth; I might just go from my bedroom to the daybed in the sunroom; but I would get dressed.

Aside from a couple of times that I had the flu, I've kept that commitment.

The last few days, fatigue has been heavier than usual. I slept some of yesterday, and again today, and when I got up today I thought, why not just stay in pj's? It was already 5:00 pm, and it's not illegal or anything.

So, after a year of silence in this place, and after fifteen years of keeping to a standard -- here I am, blogging, in my pajamas.

Those look like mystery tracks, don't they?

Those are Lucy's front paws and nose, as she reached up to eat the snow. I was there, so I could read them.

The mystery tracks of this illness are not, apparently, so easily deciphered. There they are, for all to see -- but what made them?

This landed in my Google Alerts folder:

Nine-Year Follow-Up of Danish Chronic Fatigue Syndrome (CFS) Patients Impact on Health, Social, Vocational, and Personal Lives – Source: Journal of Chronic Fatigue Syndrome, vol. 14, #2, 2007, by MM Anderson, et al. ImmuneSupport.com 01-27-2008

Objective: To determine quality of life (QOL) and health in Danish CFS patients 9 years after diagnosis.   

Methods: Thirty-four adults with CFS responded to questions regarding QOL at diagnosis, and again 5 and 9 years later. At 9-year follow-up patients also responded to questions regarding health, fatigue, use of Health Care system, alcohol and exercise.

Results:
   

Two patients (6%) had recovered and 3 patients (10%) had received secondary diagnoses.

Overall, there was no improvement, except with depression/anxiety.

The order of severity among disabilities remained the same.

Work had the highest disability score, followed by post-exertional malaise.

Patients slept and rested 13.6 hours a day (mean).

Self-reported physical health correlated with hours sleeping and resting.

Rheumatic symptoms dominated the health symptoms.

Alcohol consumption was low, and the use of the Health Care system was modest.

Conclusion: After 9 years QOL was the same as at diagnosis, only mental health had improved.

It's been about eleven (twelve?) years for me, and this is mostly true -- though I'm 'resting' even when I'm awake. I catch myself, every so often, saying out loud I'm so tired...

I try not to do this. Not talking to myself -- that seems perfectly OK to me, under the circumstances -- but paying attention to how tired I am seems pointless. If I'm going to say something out loud, I'd like it to be something more interesting.

Like this:

Any idiot can face a crisis; it is this day-to-day living that wears you out.

Chekhov -- heard on Writers' Almanac.

So, suggestions for that day-to-day. You may resist these -- I certainly did.

First, a handicapped parking permit. When my doctor suggested this, I refused it for a long time -- after all, I can walk.  A hard winter finally persuaded me. It's been helpful in two ways.

No more anxiety when I must go somewhere: will there be a close parking spot? And -- it made looking for a spot a game, rather than an exercise in necessity. I win (and I usually win) when I find a usable spot that is not reserved for handicapped parking. You don't have to get a permanent one; you can get a temporary permit and just renew it as needed.

Second, Meals on Wheels. I really resisted this one. And, if you are a food snob of any kind (organic, gourmet, etc.) this is unlikely to work for you unless you live in a very unusual place. We're talking basic meat and potatoes, here. But also -- every day -- fruit and vegetables. Also dessert! Perfectly acceptable, palatable food -- just like I was fed as a child.

No energy boost resulted for me (it's been just a month now) -- but, I'm eating a balanced diet. They even bring apples and bananas. Fresh fruit is a treat for someone who can't go grocery shopping often.

The surprise for me was the discovery that I spent a fair amount of energy just figuring out what I could manage to feed myself from the fridge and cupboard every day. Now, I don't have to think about it. There it is, delivered to my doorstep.

The tough part, of course, is moving through the crisis of diagnosis and accepting the consequent limitations. That's taken me years.

It needn't take so long for you. My advice is this: face it, accept the help, and figure out how to live a good life with what you have now, limitations and all.

Easier said than done, eh?

The other day on BBC Radio news, I heard a piece about small pleasures -- that these are the only ones that last, that can be counted on. This is so true for those of us who live, almost entirely, in our own houses.

If you are struggling to decide what to give someone who is ill this holiday season, this idea would be a good guiding principle. First, of course -- ask. We each have different preferences and needs, so the best pointers will come from the recipient her/himself. My ideas will not suit everyone; they come from my own inclinations.

I am, by temperament, a person who values small luxuries. Others may not be so frivolous, nor able to afford -- even as gifts -- unnecessary indulgences. So, ask. Perhaps your friend would most appreciate a gift certificate from the grocery store, or a payment on an energy bill. At the end of this post, I'll direct you to some other lists that are, perhaps, more practical.

These are a few of the things that make my life easier, more pleasant, and more fun:

Sensa pens: These aren't cheap ($30 and up) but they are oh so lovely. Beautifully balanced, and soft to sore hands. I have both the rollerball and the fountain pen. For anyone who writes often, and finds it tiring, these are a very special pleasure.

Dagoba Organic Authentic Hot Chocolate: Most certainly a luxury (and currently out of stock, I see) this is nothing like the powder one mixes with hot water. In fact, after tasting this, I've been unable to enjoy the supermarket kind. It's glorious, and comforting. It must be made with milk, which can be difficult for those unable to stand at the stove for a few minutes, in which case one also needs:

Electric hot chocolate maker: Mr. Coffee Cocomation is the one I have, and I'm linking to WalMart, yes -- because, it costs half as much here as elsewhere. This is the only thing I've ever purchased from WalMart. I wish they had a one-cup one, but I've never seen one. When I can afford the cocoa, I use this almost daily in the winter; for some reason, cocoa helps me sleep. I know it's not supposed to work that way.

Moist heating pad [warning - pop-up]: Mine was purchased over ten years ago, at a local medical supplies company. It stays on as long as you are awake enough to hold the switch on, and then turns off as your hand relaxes. I find it very helpful for easing pain and inviting sleep.

Steering wheel cover: Though I don't drive often, I do sometimes. My car doesn't have air conditioning, and this summer was so hot that I couldn't touch the steering wheel when I got in the car, so finally purchased one of these. It was not expensive -- under $10, as I recall. Nothing fancy, just some kind of cushy fabric. But what I did not expect was how comfortable it is -- it makes the steering wheel bigger, easier to hold, and soft. It has made driving easier, even in the cold. If the recipient has difficulty with their hands, they will need help stretching this onto the wheel.

A comfortable dog leash: My poor dogs haven't had many walks lately, but when they did, this was the discovery that made it more comfortable for me. You wouldn't think it would make much difference, one retractable leash from another, but it did.

Here are some more ideas:

• Top Ten Holiday Gift Ideas For People With Arthritis
• Top Ten Gift Ideas for Someone Who is Sick
• Better Get-Well Gifts

And of course, there are always the best gifts: your company, your thoughts, your assistance.

And books.

May this season bring you giving and receiving in the best of spirits!

A bad spell (which can last for months) means:

• Energy to do only one or two things per day. Taking a bath or shower counts. So does cooking a meal. So does writing a blog post, or talking on the phone with a friend. Take your pick.
• Neglecting the pets. Not walking the dogs. Insufficiently petting the cats. Ignoring the parakeets. Being a bad pet parent.
• Beginning, setting down, forgetting, several books at once.
• Sleeping at least twelve hours per day. Not quite being awake the other twelve.
• Wearing the same clothes, unwashed, day after day after day, because doing laundry is too difficult.
• Eating rather too much pizza. Cheap, filling, delivered.
• Stepping carefully around piles of books, magazines, unread mail.
• Leaving phone calls, email, paper mail, blog comments -- unanswered.
• Wondering how one prioritizes long procrastinated tasks.

Of course, the fact that I can write this means that the bad spell is easing; it's only in looking back that I see how bad it's been.

I saw the doctor today. He suggests -- tentatively, as it's spendy -- a drug called Provigil. It's meant for the treatment of narcolepsy, but apparently has showed some effectiveness in patients suffering severe fatigue. He's seen patients respond with increased energy and mental acuity.

Sounds like heaven to me. I remind myself, keep hope within bounds. I've been there before. First task, investigate drug. Next task, ask you: have any of you tried this?

PostScript:

A quick note on new features!

TypePad has implemented pagination, which means that you can now navigate Abide from links at the bottom of post and category pages; and category pages won't be so long and slow to load. And, we now have feeds available for comments on specific posts. Yay!