Saturday, February 23, 2008

Wasting Spoons

Hi. My name is Jeri and I'm a pack rat. I have been all my life and I'm not sure there's any hope for me. I'd really like to change but every time I make an effort to clean a spot in any given area of my home, it ends up becoming a prime location for everyone in the house to set stuff down. This could be solved simply by removing or inclining every flat surface in the house but then it would be hard to eat dinner with everything sliding on the floor.

Even though I have had a predilection for hording stuff and not putting things in their place all my life, (read: pre-MS) I like to use the good old Fatigue Excuse for not dealing with doing something about it now. I can't waste my spoons! I read the story (in which, for people with chronic illness -- lupus in the story, your energy allotment for the day equals so many spoons) and I decided that my spoons are more important than any amount of housework. Finally! I've been given a legitimate excuse not to force myself to deal with the clutter! The only thing better would be a prescription from the doc stating "under no circumstances should this woman clean anything." That would be SWEET.

So now, as I sit surrounded by stacks of papers that should be filed, projects that have been started and abandoned mid-inspiration, and baskets of clothes that have been searching for their long lost birth dresser, I wonder how others with MS are managing. I mean, even though I do have some fatigue and need to take afternoon naps, it's not like I'm on Provigil or something. I don't have it so bad that it has affected my daily routine other than to give me a get out of housecleaning free ticket.

I told myself that I can be happy living like this because it's a waste of spoons to spend all day cleaning. But deep down, I feel like if I really applied myself (and rented a backhoe and a dumpster) that I could have a house that had that minimalist, zen-like appearance that is so calming.

Instead, I clean one section of a room and then put on mental blinders and look only at that clean spot, relishing the idea that if I could encourage clean spots to grow the way clutter seems to my whole house would erupt in plain white walls, polished floors and flat surfaces holding only those indoor sandboxes with the tiny rakes, or maybe groups of black shiny stones that look cool but have no purpose.

I have tried to tackle this problem in the past many times to no avail. I signed up for Fly Lady's email list only to discover my inbox looked like the rest of my house in a matter of minutes. I quickly unsubscribed. Being bombarded with emails telling me I had to get completely dressed every morning including the shoes goes against my philosophy that shoes are footwear for outside the house and my pink fuzzy slippers are acceptable daytime wear when indoors.

I've also bought books over the years to learn how to de-clutter. Last weekend I decided to tackle a closet whose door had not been opened in several years. I found tons of saved gift wrapping paper, empty containers that would be good for holding stuff some day, and paint cans with the remainder of whatever color the spare room had been painted 2 colors ago (in case of needing a touch up). I removed a Lawn and Leaf bag full of useless things I couldn't part with and underneath the stuff on the shelf, guess what I found!?? A book called 500 Terrific Ideas For Cleaning Everything. Honest to God.

All of this is amusing, no doubt, but it's left my mind just as cluttered as my living conditions and wondering if there's a health benefit that could be obtained by sacrificing my spoons for the betterment of my environment. After all, I don't work outside the home and can pretty much take a nap any time I want to. What's it going to hurt to really roll up my sleeves and make a dent in this stuff? Will applying myself bring on a much feared relapse? Does living in clutter cause a mental funk that is conducive to possible exacerbations?

All I know is that Better Homes and Gardens ("than Mine", the cover seems to scream) will never be beating a path to my door no matter how clean I get the joint. Knowing this, what is an acceptable level of clutter? I would really like to get to the bare walls and floor and start over and find out.

I was in a flood once as a kid and we lost a lot of earthly belongings. It makes you realize that "stuff" is NOT important. We had our family and everyone made it through the ordeal none the worse for wear. That was all that really mattered.... so why is it now so hard to part with "stuff"? Some phd guy could probably tell me, but I want a real answer that doesn't uproot my subconscious in the explanation process.

If I fear a relapse so badly that I can't lift a finger to file some papers because I might tax myself, then I'm wasting my good years doing nothing while I'm completely capable of doing lots of things. Sure, if I take the fatigue into account, life has become harder, but I have seen people in wheelchairs who have accomplished more in their lives that I am doing with my body whose legs still get me around. I'd at least like to die with a clean house one day and have my headstone read "She gave up her spoons for a zen-like existence". Better than going out in a blaze of clutter and having my headstone read "if we could have only gotten to her in that maze of stuff, she might have been saved."

It would help if 2 other people in the house weren't also pack rats. They don't even have the moral struggle with it that I do. They are oblivious to the CHAOS (Can't Have Anyone Over Syndrome -- see I'm sure the conversation that goes on in their minds as they lay down their tools from the day's remodeling project or their backpack from school goes something like this:

"Geeze, she hasn't even cleaned a spot for me to set this junk down! What am I supposed to do with it? Oh well, maybe it'll balance here. Man, she needs to do something about this." (big crash behind them as they walk away and don't look back to investigate).

I guess I just found the reason those clean spots don't grown. I'm going out to buy a new set of spoons and roll up my sleeves. The only way to test out the theory that a clean house is a health benefit for your mind, body and soul is to actually put it to the test.

I will watch a marathon of Clean Sweep shows where people whose homes are way worse than mine have a make over and get de-cluttered, then pump myself up saying "you can do this! You can throw out that pair of jeans you haven't worn in 10 years or that packing slip from something you got in the mail 2 years ago!" But then I get suspicious that Clean Sweep never does follow up stories 2 months later to see if the newly decorated space is chock full of clutter again. All they did was give the pack rats a whole new set of flat surfaces that invite the full arms to empty spontaneously.

Whew! Just writing about it has warn me out! Maybe I and my spoons will go curl up in the easy chair and gaze at that clean spot over in the corner and drift off into a blissfully uncluttered dream. I hear Fatigue calling. Gotta go.

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Tuesday, February 19, 2008

From the Novartis Archives

I came across a very interesting PDF file when checking my site stats today. Seems someone came to my site from a search for FTY720 at Novartis' site. Of course I got all side tracked seeing what the other search results were and I found this really interesting, informative and engrossing article.

Full Article in PDF format
(you'll need Adobe Acrobat Reader to read it)

Some highlights I found interesting were

  • A compound that may lead to a safer class of immune system drugs can trace its roots to a parasitic fungus (Isaria sinclairii) that preys on insects and eventually grows out of their dead carcasses. And while the practitioners of ancient oriental medicine may not have understood the fungus’ complex life cycle when they named it ‘insect in winter, plant in summer,’ they did understand the powerful health effects bestowed by a broth made from the fungus. Modern molecular medicine studies have shown that the traditional remedy practiced for thousands of years contains several chemicals that potently modify the body’s immune response.
  • FTY720 was first made by a Japanese company, Yoshitomi Pharmaceutical Industries (now Mitsubishi Pharma)2, while they were looking for new cancer drugs. FTY720 instead of anti-tumor activity, showed immune activity. That, along with its somewhat unusual chemical structure, stirred the interest of researchers at Sandoz—the company that merged with Ciba-Geigy to form Novartis in 1996.

For anyone interested in Fingolimod and the science behind it, it's worth the read.

Personally, I still say I'm glad it's in pill form and I don't have to gag one of those down...especially now that I know the fungus preys on insects and springs from their carcasses.

Excuse me while I go gargle.

Is it MS or is it OA? (Old Age)

It's so easy, when you have had MS as a companion in your life for several years, to blame everything that happens health wise on the misbehaving beast. But I have wondered more and more as I slide down the backside of the hill on that slippery slope to Old Age, if maybe some of this stuff would have come along anyhow.

For instance, my hips give me grief. Not the size of them, because fortunately I'm not overweight at 120 lbs. and 5'3" tall, but the creakiness (for lack of a better way to describe it). I get up in the morning and with my first Frankenstein, stiff-legged steps, I try to shush my joints from waking the entire neighborhood as I snap, crackle, pop my way to the bathroom.

I blamed it on the MS for causing me to need the steroids since every time I am on them I have incredible joint pain as I am tapering off the prednisone. My last bout was in May of '07 and it took forEVER for my hips to let me sleep through the night again. I thought I was doing fine -- I even spoke with my PCP and we mutually agreed that I could forgo the X-rays he had written me an order for since I was not in any more pain.

Then we went to Georgia at Christmas to see the closest thing to in-laws that I have -- my boyfriend (of 13 years)'s parents. It was downright cold up there where it's closer to a non-tropical kind of climate than north Florida is. Plus I slept in a strange bed that felt suspiciously like a cereal box full of cement with a sheet over it.

After 2 nights of agonizing torture, I was left waddling around wishing I'd brought the cane. We always go up there and wish we'd brought something you would think no person in their right mind would leave home without... like our son's nebulizer (breathing machine for asthma) the last time we went up. Turns out the "in-laws" had a couple new dogs and our son, whose asthma has been dormant since forever, started wheezing. We cut that trip short and high tailed it back to Florida.

Anyhow, here I was waddling around and explaining that my hips act up now and then due to the MS and so it's just something I'll deal with and get over, no doubt. The 3 hour ride home didn't help matters. I was so stiff I was practically stuck in a "sitting" position for days after that. It was a full week before the pain subsided.

Now I have figured out, to an exact science, the position my body must be in during sleep. Almost a fetal position with a pillow between the knees to keep legs aligned with hips, and always starting out on my right side. No matter that I wake up twisted at the waist, pillow on the floor, one knee in the air and the other leg flung out to my side at 90 degrees. works for me.

But as I creak around the house in the mornings I often wonder if the noise, pain and stiffness should really be treated as a product of my MS or is it just Old Age. For some stupid reason if I blame it on the MS it makes me feel better. I like having one fear to face. I'm not ready to face Old Age on top of everything else....there's no cure for IT either. Well, technically there is, but it's the same cure for MS and that's not an option at this moment.