Weight Loss and My MS

Ever since I quit smoking in 2007 right before entering the TRANSFORMS clinical trial for Gilenya (Fingolimod), I have been (at least in my eyes) overweight. I gained probably 15 lbs. after quitting cigarettes. For the sake of full disclosure and honesty, I'll say I started out at 115 lb. and ended up at around 129-130 lb. Over the last few months of trying first one thing then another I had gotten down to 124 lb.

Now I know a lot of people who struggle with their weight will look at that and scoff, telling me I should be happy when I weighed 130 and that it's still "thin" compared to their own weight. While this may be true, one's own body image is a matter of perspective with one's own perception often distorted. I have always been thin all my life, so having any "muffin top" or extra padding in places not formerly occupied by fat is unnerving -- and uncomfortable -- to me.

I have noticed that just the addition of 15 lbs. has made a real difference in how my body responds to the residual MS symptoms I have always had since my very first, and most acute, MS attack way back in 1999. My left leg has always been weaker than my right, and my legs seem to tire faster when transporting the 3 seemingly permanent 5-pound-sacks-of-potatoes I've acquired since giving up the butts. Just getting myself up from a sitting position takes more effort.

Bending over to tie my shoes can leave me struggling and out of breath. I feel greater fatigue. And refusing to give up the "skinny" jeans, shoe-horning myself into pants meant for a younger, trimmer me, adds nothing to my comfort.

I can't afford new clothes and I'm tired of seeing myself staring back from what obviously must be a fun house mirror because NO WAY can that be my stomach, hips or thighs. So I'm doing something about it.

I am all about taking control of your health. I have spoken on that very topic many, many times. I think a person should be their own advocate, make changes for the better wherever they can, and enlist the help of others when they need to. So it's only natural that, while I'm preaching self-advocacy, I need to DO something about this body that's making me unhappy.

When I was a small child my mother took me to the doctor and asked "how can I fatten her up?" I was painfully thin, twig-like and appearing so fragile a good wind might snap me in two. The doctor, a man from eastern Europe, told my mother quite matter-of-factly, "Fat is not healthy." And that was that.

I remained thin into my adult life when I only broke into the triple digits after becoming pregnant at 98 lbs. with my first son. I ballooned up to 160 lb. at the peak of my pregnancy and then by all rights I should have whizzed around the room like a unknotted balloon the way I reverted to my near starting weight, stopping at 105 lbs. after giving birth.

Even though I had quit before during both of my pregnancies, I had resumed smoking once I was done breastfeeding as if only another's health were worth quitting for and mine was either immune to the documented effects of smoking or not worthy of protecting.

But everything changed when I read the Informed Consent. This is the big, thick, War & Peace size document that outlines all the possible things that can go wrong in a particular clinical trial, informing you of every side effect or adverse event that *might* pertain to the study medication as revealed during earlier testing. No matter whether it was at a higher dose, or given to a different group of patients with other health issues or not, they have to fully disclose anything that remotely resembles a possible side effect or adverse event.

That is to what the "informed" part of the Informed Consent refers. You only sign on the dotted line and agree to become a test subject if you have read and understand all the things they tell you about what they know thus far about the medication.

When I read that there was a possibility of a mild "asthma" like condition that occurred at much higher doses with not MS patients but rather kidney transplant patients in an unrelated study, I still worried that twenty years of smoking might place me at greater risk. I'm a hypochondriac after all. Worrying is my job.

So I put down the cigarettes on the 4th of July, 2007 and never picked them back up again. Cold Turkey. Just like that. Knowing that every year, on my anniversary, the whole country would celebrate my milestone with fireworks, I found the willpower (buried in sheer fear, it turns out) to give them up.

That's the beauty of smoking cessation: to stay quit, you just simply never put another cigarette to your lips.

I have discovered, much to my horror, that losing weight is MUCH harder. The same philosophy does not apply. I have to make conscious food decisions every waking minute of my day now that I am facing these potato sacks and trying to rid myself of them. How does one find the courage on a daily basis to do that?

I read the South Beach Diet book the same way I read science fiction: I got to the end and thought "Well, THAT ain't gonna happen."

I tried Slim Fast for a week but decided that wasn't a long term solution either. I needed to learn better eating habits and replace the old ones. Meal replacement shakes weren't the answer.

Then I decided to sign up for Weight Watchers. I'm only on week two and I don't get the whole Points Plus way of assessing foods, but whatever it means, I'm starting to lose weight finally. Plus, without even trying, I'm being tricked into eating healthier. Fruits and veggies, being "free" as they are worth 0 points, are now a major part of my daily intake.

I can't quite put my finger on it, exactly, but I'm sensing that the point system satiates that part of my brain usually occupied by shopping. Getting a free snack of raw baby carrots almost leaves me happy in the same way a BOGO sale does. I got something for free. Yay me!

And so I can see this working. I have a daily budget of points which I can dole out to myself however I like, plus extra points I can dip into during the week if necessary. I have only used up my daily points one time so far, and that day ended with me feeling bloated and uncomfortable anyhow, so it's not likely to happen again.

The only thing is, I signed up for the whole she-bang -- meetings and online tools. So far I have only used the tools (there's an app for that) and have not attended a meeting. I fear going to a meeting and being "judged" by those who think I have no business being there. I know that lots of people need to lose more than I do, and these meetings are their place to commiserate in safety among others who also need to lose an obvious amount.

I am scared they will give me looks that say "how dare you call yourself overweight!" or "How dare you insert yourself into our sanctuary, you obvious outsider!"

Just as fear keeps some overweight folks from doing things where they feel their appearance might matter, I'm feeling that same thing myself. So I won't attend a live meeting because I'm too self conscious.

After a week I have lost 2.5 lbs. and just that half-a-sack-of-potatoes feels so good to set down! I definitely feel a difference in the impact the weight has on my MS symptoms. My legs feel less burdened and tire less easily. I'm not napping all the afternoon away. Maybe it's got something to do with snacking on those fruits and veggies that keeps my sugar level steady, but I feel evenly energetic all day.

No marathon in my future, don't get me wrong. I feel as energetic as your average 50something woman, and that's fine with me.

I will continue to share what I think of Weight Watchers and how I feel my MS is impacted during this journey, but I really think weight loss, however minimal, can have a major impact on how your MS treats you, if you are starting out over weight. You don't realize how bad you feel until you start feeling better. Let's face it, if you have MS the last thing you want to do is lug around unnecessary extra bags of potatoes.

And that's just food for thought. Mmmmm foooooood....

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 FlyLady.com). 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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