Sunday, January 29, 2012

Getting the good days to 10+ tips for surviving fibro

With fibro, I don't have a lot of control over how functional I'll be from one day to the next.

But I'm starting to discover I do have a little control.

There are certain things I can do that help me be MORE functional (and, surprisingly, not eating sugar is not as high on the list as I thought).

Here are the things, in order of importance:

1. Sleep enough. If I don't get enough sleep, none of the rest of these will help me at all. Sleeping enough means I have to sleep when my body wants it (not when society says, so for me at 3:00 am) for as long as my body wants it (so no alarm clocks allowed). I usually need to sleep a minimum of 9 hours to have a good day. If I don't have a vivid dream that I remember when I wake up, I didn't sleep long enough.

2. Take vitamins. At night before bed, I have to take a prenatal vitamin or multivitamin, 2 calcium, and a magnesium. I can skip the prenatal vitamin, but not the calcium and magnesium. In the morning, if I remember, I take potassium and fish oil. I can take the fish oil at bedtime, but if I do it too many nights in a row, then I can't fall asleep. I'm still trying to figure out how to get the fish oil worked out right, but it definitely makes a difference.

3. Make myself get up and move around. It's so SO tempting to sit in my comfy chair all day every day, but I really feel better when I get up and do very gentle exercise every day. The key is that it has to be easy, gentle exercises that don't stress my body at all. No impacts, no tensing muscles, no breaking a sweat or getting the heartbeat going. A nice gentle walk in cool weather works wonders. Hiking, calmly and in a relaxed way without carrying anything, is also great--I think because the mountain air keeps me cool, but I'm not sure. Maybe it's because I love being out in nature and that makes the exercise more relaxing--it's kind of the opposite of a gym. Gym=evil for me.

4. Eat and drink enough. Drink only water. ONLY. Healthy food helps a lot, but sugar has less impact than I thought it did if I'm doing the previous three things. If I'm not, then sugar is really bad stuff. Mostly, though, I find that the advice in the Word of Wisdom works well: Lots of fruits and veggies, lots of grains, meat (but sparingly), and then don't worry too much about the details of it. Often, when I'm already hurting, drinking hot cocoa, hot postum, hot cafix, hot cider helps immensely. I think it's the holding the hot cup more than anything, though, not what's in it.

5. Control my movements, especially avoiding holding a position (doubly especially with any muscle tensed). Never repeat a motion more than 5 times without changing the activity a bit, never hold my arms out or up, especially with anything in them (holding a cup half full of water out to a child has been known to make me lose my temper because it causes pain). Never tense a muscle and hold it that way. I read once that people with fibro should imagine an old fashioned hoop skirt hanging from their shoulders and never move their arms outside that shape. It really does help. I have to be careful to let my body "float"--not let my wrists and hands push down into the keyboard, not hold the steering wheel tensely when I drive, not hold things tightly or move with any kind of jarring motions. I can't carry heavy things because that requires me to "tense and hold" my muscles, and that's bad. Standing (like in line) for too long is very bad because it is a whole body "hold," and holding a position is painful. Sitting in a car for a long time is the same.

6. Avoid impacts. Kids banging into me, bumping into objects, walking hard (stomping my feet, for example, or jumping), getting hugged or kissed too suddenly--all are not good. This includes all kinds of sensory impacts, not just touch impacts--sudden bright lights, sudden strong smells (like from perfumes and lotions) and sudden noises are impacts, too. Emotional impacts are also on the "out" list--no fighting, no getting yelled at, no emotional extremes without any buildup or let down--I try to stay as level as possible. My lucky kids--I pay if I get mad at them, so I try not to. (Sometimes this is inevitable--I do have six kids, after all, and sometimes they get in trouble; often, though, if I'm losing my temper it's because I'm in pain, not because of something they did; pain is common, so I ignore it until it must be dealt with, and then I often experience it emotionally first, through anger, and physically afterward, when I realize I'm hurting all over). This one is the hardest to control--by nature, impacts are not expected.

7. Stay away from tight and bulky things--especially things you wear that are tight or bulky. Anything that squeezes at all is too tight--nylons squeezing my legs, socks squeezing my ankles, skin-tight shirts squeezing my arms, waistbands squeezing my waist, earrings pinching my ears, hats squeezing my head--all are bad. Even gentle squeezes from clothing can make a whole limb ache. And I can't stand to have shirts (or anything else) tight around my upper arms, or have anything touching my armpits. It's just bad. I can barely stand to wear glasses because they squeeze my nose and ears (or else fall off). I am very limited in hairstyles I can use because I can't blow dry my hair (that's a tense-and-hold position) or put anything in my hair that makes it squeeze my head. Interestingly, I find it especially important to not have anything pushing on my toes. I can't wear nylons because they squeeze my toes. I can't wear shoes that touch my toes almost at all (shoes, in fact, are a serious issue for me--finding shoes that don't make my whole body hurt within a few minutes is very difficult, and when I find them, I wear them until they literally fall apart and can no longer be worn. My shoes have to be easy to get on, not touch my toes, soft to wear, loose but not take any effort to keep's tricky!). Also, no layers (too bulky).

8. Sit when I get the urge to sit, and then only on my soft chair that reclines a little too far and cradles my back in just the right way. Sometimes I only have to sit for 5 minutes and then I can get up and get moving again, but when my body says, "Sit now," I HAVE to sit--right then--or I pay for it. Sitting on hard chairs, benches, the floor, or even the wrong kind of "soft" chair is a nightmare that makes my whole body hurt. Church is especially hard because of this.

9. Avoid temperature extremes, but especially cold. Getting too cold makes my whole body ache. Ironically, though, the things you usually use to bundle up and stay warm are all tight or bulky, and both of those are bad. My husband got me a pair of leather gloves lined with something soft, and those have been heavenly--they're a size too big, so they don't squeeze anywhere, but they keep my hands warm when I drive. I wear coats that are a little big, and my mom got me a scarf that has a hood sewn into it, so I can keep my head warm in the winter without anything ever squeezing it. I also very much enjoy the hot wax bath for my hands that I "adopted" from my mother.

10. Avoid medications as much as possible. The side effects as so much worse, usually, than whatever I'm dealing with that it's just not worth it.

11. Get in the sunshine often, but without getting hot. Sitting in the sun and getting hot doesn't help, but sitting in the sunshine when there's a cool breeze, or when I'm eating a popsicle--that helps. Sitting in the pool DOESN'T help. I'm not sure why. Perhaps it's because the reflection of the sun on the water is too bright, or because a pool is rarely quiet, and calm, or maybe because I don't like getting my face wet, so being around the threat of getting my face wet is too tense, or maybe it's too much chemicals. I try to avoid chemicals.

What doesn't work? Exercise (other than the extremely gentle ones I mentioned before), high anything diets (for me, fibro control is all about balance, levelness, gentleness to myself), massage (feels so nice when I'm getting one, but my whole body hurts for a week after), "toughing it out," pushing my way through the pain, walking it off, working when I'm tired, getting 8 hours of sleep on a regular schedule,

Interestingly, if I can a) get enough sleep, b) get my vitamins, and c) control my environment to adjust to all the rest of these, then I am a fairly functional person. I still can't pick up toys, but I can get a lot of things done, can have meaningful interactions with my kids, can avoid taking any medications (for sleep, for depression, for anxiety, or for pain, all of which most people with fibro need). What more could I ask?

I have a lot of friends and family with fibro, and as I write this, I'm curious: What do you do to survive? Any tips or tricks that work for you?

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