Where Do You Fall in the CFIDS/Fibromyalgia Rating Scale?

I have such conflicting emotions towards this piece of furniture.  

Skippy and Lulu don't. 

I was asked to participate in a survey recently and one of the items that we were asked to evaluate was our fatigue levels as measured by the  CFIDS/ Fibromyalgia Rating Scale:

• 100: Fully recovered. Normal activity level with no symptoms
• 90: Normal activity level with mild symptoms at time
•  80: Near normal activity level with some symptoms
• 70: Able to work full time but with difficulty.  Mostly mild symptoms
• 60: Able to do about 6-7 hours of work a day.  Mostly mild to moderate symptoms
•  50: Able to do about 4-5 hours a day of work or similar activity at home.  Daily rests required.  Symptoms mostly moderate.
• 40: Able to leave the house every day.  Moderate symptoms on average.  Able to do 3-4 hours a day of work or activity like housework, shopping, using computer.
• 30: Able to leave the house several times a week.  Moderate to severe symptoms much of the time.  Able to do about 2 hours a day of work at home or activity like housework, shopping, using computer.
• 20: Able to leave house once or twice a week.  Moderate to severe symptoms. Able to concentrate for 1 hour or less per day.
• 10: Mostly bedridden.  Severe symptoms
• 0: Bedridden constantly.  Unable to care for self.

This was an interesting experience. I haven't been asked to rate my fatigue levels in years. I gave the survey a great deal of thought, and decided that most of my life occurs between the levels of 30 - 40.

Hm. Gee. That sounds pretty pathetic, I thought.

I reviewed the categories again......but there was no denying that I seem to be functioning somewhere between 30 -- 40% of what is considered "normal activity level with no symptoms".

Crumb.

I think that at the peak of my rituximab energy cycle, I may have made it to 50-ish, which accounts for all of eight months over the past eighteen months. I loved those months. But the remaining ten months fell firmly in the 30 - 40s. And since it appears that my rituximab infusions are a thing of the past, unless some other treatment modality comes along, I'm stuck there for awhile.

This explains -- maybe a little -- why aside from fatigue, my biggest difficulty seems to be fighting that constant battle against myself to just get up and DO something. It's more than just being fatigued, or in pain. Put simply, I'm tired of being tired. I'm tired of having to struggle against myself to do the simplest of things.  Everything just seems so hard. Everything. I get so tired of fighting with myself for what seems like every time I move this old carcass of mine. I feel as though I'm constantly in a battle with my body to keep it upright or moving at all. Whether I'm doing the dishes or folding laundry or working on the computer, I always find myself wistfully thinking that I'd rather be horizontal somewhere: in my hammock chair, or on the couch, or at worst in bed. Even on my really good days, with hiking boots on and Lulu trotting ahead of me on her leash, I begin a short walk in good spirits but within minutes deflate and find myself searching for Goldie or a bench or a nice flat piece of grass.

I know that my difficulties are minuscule compared to others with more serious health issues, and I don't mean to insinuate that I could even come close to dealing with the same level of challenges that catastrophic illness brings; such as stroke, cancer, severe pulmonary disease and the like, or even the changes in our bodies that accompany normal aging. That being said, the fact still remains that for me personally this disease STINKS. Well, there's lots of facets of this disease that are pretty stinky, but in particular fatigue seems to be more odiferous than the others.

Here's an example: Last evening was just lovely. As the sun was setting along with it's UV rays which seem to zap me even more, I figured I was safe to escape from the house. I watched John zip around mowing the lawn and pruning the fruit trees  and grabbed a hoe almost without thinking and began to chop away at some weeds near a flower bed. It felt so GOOD to have my hands all dirty and my muscles working with a purpose. I pulled weeds and smoothed the dirt and examined the flowers.

Ahh. But it didn't take more than ten minutes worth of work before I knew it was time to retreat to my hammock chair; where I swung and boing-boinged and grumped.

Why should a simple thing like pulling weeds be so hard?

Well, I know why. There's no denying that for me, my particular flavor of autoimmune disease includes life-changing fatigue. Even though I KNOW this, after ten years I still rail against it. I know that I have to rest and listen to what my body is telling me: Julia. You're tired. Don't go too long without a rest or you'll crash big time.

But I also know this: To simply give up and spend as much time horizontal as my body seems to want will in the long run cause more problems than I already have. My muscles would become even more deconditioned, my already big hindquarters would only expand further, and by limiting my sphere of personal interactions to what would be possible from the couch or bed I would suffer psychologically as well as physically.

Not good things.

Which means that I have to suck it up and push to do things that my body doesn't want to do every day. Really big, hard things like walking up two flights of stairs. Or brushing my teeth. Or folding a whole laundry basket full of clothes that John has already put through the washer and dryer, bless his heart. If I allow myself to dwell on all the hard things......they only seem to become harder. I hate that. I hate feeling weak and needy but I also hate feeling as though every day is yet another battle. So I've been wondering what I can do to avoid those hateful feelings. I HATE HATING stuff.

I've decided that while my life is far from perfect, I need to look around and see that I'm not alone in my imperfections. I have a good friend that has juvenile onset diabetes and walks a very thin line between normal and abnormal blood sugars; she has diabetes-induced cataracts, she occasionally wakes up covered in sweat and weak from hypoglycemia, and experiences all the dumb stupid long term effects that nasty disease can heap on her. She's doing everything right: she eats right. She exercises. She maintains an ideal body weight. She keeps up with the very latest in diabetes education and research. But her life is still a challenge and will continue to be so. Every single day is hard for her.

Another friend suffered a debilitating stroke when only in his late '40s. He lost control of half of his body, his ability to speak, his ability to work, and ability to drive. Every single day is HARD for him.

I know a wonderful family that has lost their home and financial security as a result of this crummy economy. They were forced to sell their home and move into a different city to attempt to live on a fraction of what they previously were accustomed to. They worry about those basic things like food, clothing, and shelter. Every day. What hard work that is!

The person that initiated the survey lives in the 10 -- 20% bracket of the CFIDS scale. My goodness.

My friend Bev's mother is dealing with the ravages of Alzheimer's disease. Bev is trying to keep her head above water as she cares for her mother and her husband and her family. (And her chickens and four dogs -- but then that's another story altogether.)

I guess the old adage about "counting your blessings" may be somewhat overused, but still rings true. It's what keeps me from teetering on the edge of depression and self-pity. If I think about even the simplest of things -- like the fact that I have a hammock chair (I've forgiven it for dumping me on my tush three times), and a family, good friends, and a couch to be cranky upon, then I feel better.

30 -- 40%?  Pfffftttt.

If fatigue is part of your Sjogren's syndrome symptom mix, where would you rate yourself in the CFIDS scale?