WATERMARK

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?