Down and Ow

June 9, 2008

I’m having a horrid flare. You know the drill– insomnia, pain screeching through every nerve ending, exhaustion, fogginess. I’ve given up on trying to figure it all out. Well, actually, I’m lying– I’m still trying to figure it all out.

I was up at 4:30 this morning, hurting and sleepless, so I did some searching for fibro information on the Web and found this great site— 100 tips for coping with fibro. I like the author’s route of changing diet and nutrition, and of going “au naturel” as far as medications. I’m going to start taking OPCs, which are a type of antioxidents, and I’m also going to try cutting out foods from the nightshade family for a while to see if it makes a difference. This includes tomatoes, potatoes, green peppers and eggplants. Sigh…no more baba ganouj.

I’ll keep you posted on this. In the meantime, I’d love to hear anyone and everyone’s best tips for dealing with fibro. Here are some things that I can’t do with out, and one thing that I want really, really badly.

Bath Therapy Bath Salts: You can get these at any drug store, at Target, Wally World, etc. A long soak in a bath of this stuff really does help me.

Heating Pad: I named my heating pad Antonio Banderas, which makes me feel a little less old ladyish when I lie on it. I really hate heating pads, but it does bring relief.

Lidoderm Pain Patches (by prescription): Make sure it’s Lidoderm, as some of the others have um, killed people. This is great for dulling pain in a localized area. You’re only supposed to use one at a time, but I often cut mine in half so that I can get relief in more than one place at once.

Massage: Can’t afford this often, but a really good massage therapist can work wonders sometimes. One day, when I’ve one the Mega Millions Jackpot, I’ll hire a live-in personal masseuse. I’ll call him Antonio Banderas, and change my heating pad’s name to Bud or Mac or something.

Love: Being around kind and loving beings makes my life gentler, and often eases things. My boyfriend and my cat make me feel all warm and fuzzy inside, and I’ve recently gotten a new little puppy that sits on my lap and warms my heart. Gentleness really does help combat the harshness of daily life.

Memory Foam Mattress Topper and Pillow: These haven’t helped so much lately, but for a few years there, I would not have been without them.

Osim IMedic Massage Chair: At about $2000, I simply can’t afford one of these, but this chair is amazing. It’s available at Brookstone, and I recommend that you try one out if you have a store nearby. Honestly, it’s fantastic, and I’ve actually driven to Brookstone a few times to use one when I’ve been hurting badly. My reason for this has been to experiment, to see if it makes a difference when I’m hurting a lot. It does make a difference– it really does. Now, if Brookstone would just gift me with a chair in exchange for this plug, I’d really appreciate it.

If I think of any other things that you haven’t heard a thousand times, I’ll let you now. In the meantime, what helps you?

Thing One and Thing Two

April 19, 2008

There are two things I want to share with you.

Thing One: Ruby Shooz over at  A Piece of Peace has written this gorgeous post.  I found it so beautiful and so true that I printed it off and hung it above my desk. Thought you might enjoy it too.

Thing Two: Kendall left this comment on my other blog:

I just wrote on my blog about my new-born theory that migraine (the bane of my existence) might be a result of over-stimulation…and that led me to wonder if fibromyalgia, CFS, and similar difficulties might also be. I will stick with what I know, which is migraine, but I’d be very interested to have you check what I said on my blog (which is Kendall’s Quest) WHEN YOU HAVE TIME (no hurry!) and see if it resonates for you.

It’s a very interesting post, and I think that there is a lot to what she’s saying. After I read this, I thought about how much worse my fibro has gotten since I’ve been at work. I started pondering how the work itself isn’t stressful at all right now. They are being so good to me there. I’ve been given light work, I stay at a place that is peaceful and has wonderful energy, and I’m getting plenty of rest. Still, my body has been screaming, my exhaustion level is off the charts, and my brain’s been pretty foggy.

After reading Kendall’s post, I realized that what’s different is the amount of stimulation. I commute in rush hour traffic for almost two hours each day. Our office is full of noises, lights, technology, people, hustle and bustle, and although my work is not stressful, I push myself to get a lot done. What’s changed is the amount of stimulation, and I believe that what Kendall’s saying may be a factor here.

A couple of days ago, I was driving home in tears. I was hurting, mentally exhausted and semi-depressed, because when I’m feeling this way, I worry about how I’m going to get through all of this– not just this particular job, but earning a living in general. My supervisor had said earlier, “You’re pushing yourself too hard. You even have a doctor’s note that specifies that you should be working less hours than you have been. Why don’t you come in at eleven tomorrow?”

So yesterday, I did just that. I spent a leisurely morning drinking coffee on the patio of the person I’m staying with. I did my bird/ tree/ sky watching thing. I read a little. I took it very slowly. I slowly packed my things for my weekend return home. Then I went to work, and as soon as I started hurting, I told my boss that I was leaving. I wanted to get home before my pain overwhelmed me, and before the rush hour traffic commenced. I worked a grand total of four-and-a-half hours.

It made all the difference in the world. When I got home, I was tired, but not pummeled. I was not hurting at all. I slept well. And today, I feel pretty good.

Of course, I will never be able to do this type of thing in the “real world,” but this has given me a wonderful opportunity to experiment. I’m going to really start paying attention to overstimulation, how to pace myself, how to start noticing these sensory overloads to see if there’s a connection. I also have to get this balance thing down better.

I won’t be able to do the four-and-a-half hour work day regularly, but maybe I can on Fridays, so that my entire weekends aren’t spent recuperating.

Anyway, it’s definitely food for thought (which has no calories by the way). If anyone has noticed a similar link, I’d love to hear about it.

Today…

April 17, 2008

…I feel like a human shin splint.

Well, if I wait until I’m feeling better, it will be a long time before I post anything, so I’m going to write a little here, just to stay in practice.

For some mysterious reason, I’m feeling pretty down right now. There’s no explanation for this that I can come up with, so I’m just trying to ride out the storm, and act as if everything’s okay, because the reality is that, well, everything’s more than okay.

The past week or so has been extremely frustrating. My thinking’s been foggy, my body hurts, the mood’s been low, and I feel sort of disconnected. I’m not sure if it’s the fibromyalgia, menopausey stuff, our tenuous financial situation or just plain old depression, but it’s frustrating me to no end. All I want to do is feel like myself again.

I have so much to be thankful for. It’s Christmas, and I’ve got a loving, supportive boyfriend, a wonderful family, a roof over my head and twinkling lights on the tree. These feelings have nothing to do with anything external, and I’m anxiously awaiting a return to my “normal” self (which, if you read this blog, you know is anything but normal).

Tom says that I need to “get it out,” and talk about it. He says that I tend to go inward when I feel this way, and he’s right. The reason is this: I have absolutely nothing to complain about. When I look around and put this into perspective, the mountainous hardships that others face make mine seem like tiny little dust motes in comparison.

I know this is a really downer post. I don’t mean it to be. But here’s how I’m sort of feeling right now. As I internally whine and complain about my less-than-stellar mood, my aching body, or my dire straits, I’m staying mindful of those who have nothing. As much of the world fights over parking spaces, argues with sales clerks, and complains of shopping yet to do, or of presents still to wrap, I think about the people in New Orleans who are still displaced. I worry about those who live in parts of the world where they can’t even leave their homes and feel safe, and those whose wish lists consist of nothing more than food, shelter, clothing, and peace. When my body hurts, I think about people confined to wheelchairs who’d kill to be able to do the things I do on any given day. As I sit here missing friends and family, I feel so exceedingly grateful for the kind and loving people who are in my world, regardless of the number of miles that separate us.

Recently, I came upon an article about Kwanzaa and its traditions. There are seven guiding principals, which I think are quite beautiful. Here they are:

  • Umoja (oo-MO-jah) Unity stresses the importance of togetherness for the family and the community, which is reflected in the African saying, “I am We,” or “I am because We are.”
  • Kujichagulia (koo-gee-cha-goo-LEE-yah) Self-Determination requires that we define our common interests and make decisions that are in the best interest of our family and community.
  • Ujima (oo-GEE-mah) Collective Work and Responsibility reminds us of our obligation to the past, present and future, and that we have a role to play in the community, society, and world.
  • Ujamaa (oo-JAH-mah) Cooperative economics emphasizes our collective economic strength and encourages us to meet common needs through mutual support.
  • Nia (NEE-yah) Purpose encourages us to look within ourselves and to set personal goals that are beneficial to the community.
  • Kuumba (koo-OOM-bah) Creativity makes use of our creative energies to build and maintain a strong and vibrant community.
  • Imani (ee-MAH-nee) Faith focuses on honoring the best of our traditions, draws upon the best in ourselves, and helps us strive for a higher level of life for humankind, by affirming our self-worth and confidence in our ability to succeed and triumph in righteous struggle.

Nice, huh?

This mood will pass, and when it’s gone, I’ll still be left with the amazing gifts that are a daily part of my life (this includes you, dear reader). In the meantime, I wish you all truly beautiful holidays, no matter what you celebrate.

Roll With It

September 8, 2007

stormI’ve come to dread the rain and the cold. Just knowing that winter is around the corner is filling me with fear, because as bad as the Fibro’s been this summer, I know from experience that it’s going to get worse.

This is a new phenomenon with me, this weather-phobia. I’m also becoming a little activity-phobic, knowing in advance that a long bike ride or a strenuous day of yard work will do me in. If you knew that every time you walked out the door, a giant lion was going to leap from the bushes and bite you…well, eventually you’d just subscribe to Netflix, make some popcorn, and happily settle in to being agoraphobic.

I refuse to give in to it completely, so I compromise with it. A little less yard work, a shorter ride, canned soup instead of the big dinner I was planning. But the weather, well… I haven’t learned how to control that yet. If I find out, I’ll let you know.

Today I heard the roll of thunder announce an approaching storm. I used to love thunderstorms–the sounds, the blazing lightening, the rain against the windows. Now all I can think of is, “Arghhhhh! More body pain!” And it’s true. The weather makes me ache like crazy, all the way to my bones. This time, however, I decided to get all happy about it. I said to myself, “Oh boy! A thunderstorm! Yippee!” I got a book and curled up on the sofa, snoozed a little, and listened to the beautiful sounds of the great outdoors. I tried everything I could think of to roll with it, and to see if positive thinking and self-nurturing would help. The hardest part was pushing away the programming within me that tells me that I’m lazy and self-indulgent for not “DOING.” I wrestled with that for quite some time, but it’s realizing all of these things that are a part of the process for me.

In the end, I hurt just as much as ever, but it actually did help a bit to keep the dread and fear at bay. Soon, I’ll practice saying, “Minus twenty degree weather! Snowflakes! Yippee!”

I’m going to learn to roll with all of this. Like thunder.

Ode to My Algia

September 7, 2007

thedaOh woe is me,

Alack, alas

Fibromyalgia’s a pain in the ass,

And the neck and the knees and the hips and joints;

It makes you cry, it disappoints.

No one can see the way the pain,

Effects your mood and fogs your brain.

It hurts your pride and makes you whine;

Doctors think you’re Frankenstein.

Charlatans will take your money-

Just stay strong– hang in there honey.

You may just be the one who finds,

You had the answers all the time.

A Momentous Occassion

August 24, 2007

paintToday is the day that I finished painting the bathroom. It’s now marked on my calendar, and I will celebrate this date on a yearly basis. Hopefully, I’ll get lots of presents. I’m going to Hallmark to see if they have some announcement cards that I can send out.

This may not sound like such a feat for a bathroom the size of a Saltine box, but for me, it’s the equivalent of performing open heart surgery using only a nail file and some Elmer’s glue. My body isn’t cooperative these days, so I had to work slowly and kind of schedule painting around my energy and pain levels. Also, I’m really bad at the whole wall painting thing, so it took almost ten days to complete this task. Seriously, the room is only about 4.5′ x 5.5′, but for me, it may as well have been the Taj Mahal.

At first, I decided to cheer it up by painting it a sunny yellow color. I didn’t realize how different it would look when I got the paint home, but when I finished, it looked like someone had urinated on all the walls. Ugly and depressing. Tom got the idea of trying topaint roller sponge paint over it, so I tried that. The result was that it looked as though someone, after peeing on the walls, decided to throw blobs of Crisco at them. That Crisco that’s semi-mixed with chunks of fake butter. They haven’t invented the term for this effect, but “vomit-inducing” is close enough.

I went to a different paint store. This one had a little light box where you could hold the sample up to different types of lighting to see how it would actually look. I settled on this blue color. Not something I would normally choose, but it looked really good under the light.

I went home and restarted the project. Here’s how I did it.

  1. Spackled holes in walls.
  2. Taped towel holder, toiler paper holder, cup holder, and toothbrush holder.
  3. Painted walls urine yellow- two coats.
  4. Sponge painted walls with lighter yellow and white.
  5. Painted ceiling white. Two coats.
  6. Painted walls blue, three times to cover the yellow.
  7. Painted trim. Twice.
  8. Repainted places on walls where trim paint got on them.
  9. Repainted trim and ceiling where I splashed blue paint.
  10. Cleaned sink and floor where after poured white paint into a pan that had a hole in it.
  11. Repainted parts of wall where I once again got trim paint on them.
  12. Taped walls next to trim and painted trim again.space saver
  13. Painted door a couple of times.
  14. Sanded medicine cabinet and repainted.Removed tape.
  15. Took a putty knife and removed paint dots from floor, sink, windows.
  16. Scrubbed bathroom.
  17. SINGLE HANDEDLY put together a space saver for over the potty.
  18. Hung one of my paintings over space saver.

Ta-da!!!! It’s done!

To do this project yourself, here’s all you need:

One gallon pee-yellow paint

One gallon white ceiling paint

One quart white trim painthat

One gallon ice blue paint

Spackling paste

Paint rollers: 1 large, 1 for trim

Sea sponge

Corner sea sponge roller

Brushes: Large, small, angled, tiny

Painters tape

Naps

Lidoderm Patches, for muscle acheslidoderm

Newspapers for floor

Paint pan: check for holes

Stirring sticks

Screwdriver to remove faceplates. Note: if you paint the wall sockets (as I did) make sure you don’t gook up those little reset buttons (as I did)

Sandpaper

Lots of paper towelspills

Various cleaning products

Expendable pants and shirts (several of each)

Baseball cap– (I learned this a little late)

Tranquilizers, alcohol, Tylenol (I didn’t use these, but in hindsight, it may have helped)

Seventeen spare hours– to put together the space saver cabinet.

Total project time: 406 hours

Follow instructions above, and most importantly– have fun!

August 23, 2007

tree My self cure for Fibromyalgia is harmony. As soon as I attain harmony and balance in most facets of my life, I expect that this will go into permanent remission. It’s a plan, anyway. I’m not there yet, but I’m getting closer…

lichtensteinYes, I’m being sarcastic. I hate this &*%@!# syndrome, disease, illness…whatever it is.

Today, I found out that my short term disability claim had been denied due to “lack of medical evidence.” What bullshit. My medical history looks like the Encyclopedia Britannica. I can appeal it, but I am so mentally and physically exhausted that I want to give up. And I’ll bet that’s just what they’re hoping I’ll do, so I’ll have to fight it.

I also called the FMLA people. FMLA only lasts for 12 weeks, max. That means that on September 22, I’ll either have to go back to work, or be fired. This makes sense to me, actually– after all, they do have a business to run.

As winter approaches, I find myself filled with dread (of the pain) and fear (of the future). In the past, my fibro really only kicked in to an unbearable level in the winter. This year, it’s much more random. I’ve been hurting off and on all year, and have reached a new level of exhaustion. This causes the depression to become worse, my stress level to go up, etc. You know the drill.

What do I do? How do I support myself? I can’t afford to keep insurance. I can’t afford to keep going to doctors looking for a miracle. I’d really like to go back in time and be the peppy, workaholic gal that I used to be. Since that’s not possible, I think I’ll go and take a nap. I’m so tired.

Fibromyalgia Cease-Fire

August 19, 2007

Today, I’m having a Fibromyalgia cease-fire. That’s the point I reach after a brief cycle of sadness, frustration and fighting the flare-up that I can feel burning inside of my body. I ache, I cry– internally, I’m screaming, “NO, NO, NO! Go away!” Exhaustion, pain and depression win out, but I’m fighting a little less now, and sort of learning to bend with it.

It’s like when my kids were babies– you know that a baby is going to do what a baby is going to do, despite your best laid plans. You carefully arrange the day– make the bottles, pack the diaper bag, dress Junior in his cute little outfit and set out for some activity. As soon as you reach your destination, he poops all over the place, and you have to leave. Plans are scratched, and you have to just go with the flow. With a baby, you understand. You treat him with love, no matter how much he may have screwed up your plans. With Fibromyalgia, my tendency is to want to spank the baby, yell at the baby, punish the baby, etc. I have no compassion for this syndrome.

That was how yesterday was. I was supposed to go bicycling, and I wanted to paint the bathroom. Instead, my body began screaming for attention with all of its aching, my mood started spiraling downward, and I was overcome with fatigue. At first I resisted it. Then I grudgingly succumbed to it. I napped, wrote in my blog, and cried to myself a little. I asked Tom for a hug. Later, we watched Gods and Monsters and went to bed. I felt awful for changing the day’s plans.

I really get trapped into this feeling of wanting to climb out of my body, wanting to die, wanting some sort of magic feeling to wash over me to make this all go away. It’s like slipping on a banana peel…I’m flailing about, trying to regain balance, dreading the impending fall. It’s always two steps forward, ten steps back.

So, today I’ve called a truce. I will be kinder to the enemy (Fibro). I’m going to learn how to actually befriend this unwelcome visitor. I’ve watered the garden (it relaxes me), made breakfast (a small, no-cooking one), postponed my big projects, and for the past couple of hours, I’ve been listening to music and painting–a picture, not the bathroom. Now, I’m tired, and I’ll rest. Tom wants to go cycling later, and I’ll try again.

(Reading over this, I realize that it all makes me feel so *gasp* middle aged.)