From Sick Humor
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:
A bad spell (which can last for months) means:
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!
Solitude, from the odd neighbor
[click for larger image]
It's Thanksgiving. I'm alone. It would be a day like any other, except
it's this day; this day to celebrate attachments, family, friends,
community. Any other day, I am grateful for solitude; this wide
emptiness I need for writing.
Not all writers need this; some
seem to be quite social. But I do need it. Empty day after empty day,
in which to explore my insides; in which to watch my narrow outside.
What Abigail calls the vertical: the going down; the going up.
The
Bad Smell is back. Every year or so I have an attack of this unpleasant
smell. It permeates everything. During the first few episodes, I would
drag friends and neighbors through the house, trying to find its
source. No one but me can smell it. Whether it's an ordinary scent that
my brain decides to warp into something awful, or merely a misfire in
the brain itself, I do not know. My doctor says: Wow. An olfactory hallucination. That's weird.
And
it is weird, but I am not alone. A few years ago I was perusing random
blogs, and came across an entry wherein the author spoke of an
appointment to see a neurologist, because of a terrible smell. A quick
review of old posts and her About Page told me that yes, indeed, she had chronic fatigue and fibromyalgia.
I checked back, and as I expected, the neurologist found nothing. So I
know it's just another of the inexplicable symptoms of this
inexplicable syndrome. One that is shared, but not noticed. No
physician has yet wondered; no researcher has yet explored.
In
the meantime, I try to cope. With each new assault, I recognize it
sooner; I know there is no point in going from room to room, looking
for something rotting or dead. Once, during an especially intense
episode, I wrote in my journal about smelling my own death.
We writers may seem staid on the surface, but we can be melodramatic on the page.
I
try to find my way to gratitude, on this day we set aside for that. And
I do, often, feel grateful, and not only in the sense of sprinkling
sugar on lemons. Morning light, the purry, furry greetings of my
companions. The bright red head of a woodpecker in the garden. That I
am sheltered and fed, where others are not; where I could well not be,
if not for a largely fortunate life and the care and love and
generosity of others. For this machine, on which I place my ephemeral
thoughts.
I brush my teeth; I chew on pungent ginger candies;
I catch myself when I begin to wander about, trying to locate that
terrible smell...
The smell will go away. Tomorrow I will share
a meal with a friend. Today I will talk on the phone with another, and
another. The snow will melt, the gate will open freely once more, the
squirrels will be fed. In the meantime, I have this moment, in which to
be thankful.
Abide has been linked to by the CFIDS Association of America, and I am getting lots of new visitors. I feel I should offer you something of substance, but since I am doing both NaNoWriMo (National Novel Writing Month) and, at Watermark, NaBloPoMo (National Blog Posting Month) I haven't much energy to prepare a new, substantive post.
My NaNoWriMo project is a memoir of sorts, a collection of memories. As it happens, I've written a bit about the time I first became ill -- so I'm giving you that, beneath the cut. This is what I have.
If you are new here, I hope you will explore a bit, and find something of use.
[This post was written before I saw Lorelle's Blog Challenge, but I'd say it meets it.]
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