Mind Racing, Body Paralyzed

December 10, 2009

I used to be a sort of even keel, calm person by nature.  I used to feel pretty much the same everyday.  Not including big life changes (but even then, sometimes), I managed stress well.  My moods didn’t fluctuate from one day to the next and I didn’t feel like I was riding a roller coaster in the dark.  Which is exactly how I feel now that I have Fibromyalgia.

So far this week I haven’t experienced much calm.  Period.  The closest I came to it was yesterday when I was working from home and I had some Wilson Phillips music playing softly.  But instead of calm, I felt extremely energized and rushed around doing all kinds of household duties while I had that energy.

Usually I’m in bed resting when my husband gets home from work and he has to rant a bit about “what’s for supper” and “where’s Mom” before I drag myself up.  Yesterday I started supper: putting on the rice, cutting vegetables for stir fry and defrosting the chicken so it was almost ready by the time he got home.  I could tell he was surprised. :)

Today, my brain is racing but my body feels lethargic.  I truly would love to crawl back in bed and sleep until I wake up naturally, as in, without an alarm.  My back was sore when I got up today, and it was a real struggle to wake up when the alarm went off.

Yesterday my Dr. Frank’s Joint and Muscle relief spray came in the mail.  I squirted four times under my tongue last night and again this morning.  Also got a new pill container to separate my pills for each day of the week.  That’s only to make it easier on myself—instead of opening and closing three different bottles of pills every night I can pop open one lid and dump them all out. My twelve year old daughter was watching me sort out pills for my new container last night and she said, “Wow, it’s like you’re really sick or something.”  Yeah.

I’m hopeful the small adjustments I’ve made in my medications will be effective, and that the nutritional changes I’m about to make will help, too.

But what I’m frustrated with is this roller coaster from one day to the next.  Not only does it make it impossible to set plans, it makes me feel like I’m walking on egg shells.  Normally you’d feel that way toward someone else whose moods you can’t predict, walking lightly around them not to set off that invisible switch…but when that person is yourself it’s very unnerving!

I never in my wildest dreams would have thought this was possible.  That I couldn’t control my moods from one day to the next; that I couldn’t count on myself to be patient and pleasant with my coworkers or my precious children when they’re not doing anything out of the ordinary to cause me to explode inside; that I would have the desire to organize that basket full of junk (bills, letters, magazines…the catch-all basket that holds everything no one wants to deal with), but that I would sit and look at it without having the least bit of energy and drive to get up and actually organize it.

I’ve connected with several other FMS sufferers on Twitter and read some of their blogs since starting my own a couple weeks ago.  I know there are things we can learn from each other.  The way this illness manifests itself so uniquely in each person drives me batty though!  No wonder doctors find it difficult to get people on exactly the right meds to treat their symptoms.  And the day I see my doctor I might be experiencing more depression than fatigue, or more pain than depression (it’s like a tossed salad!), and so he treats me for how I’m feeling on that particular day which might not really be so helpful in the days to come.

I’m thinking about trying to start meditation.  Does anyone have any tips on how to go about starting?  My goal is to sit still for five minutes every morning and again for five minutes in the evening when I’m alone.  Just sit and try to clear my mind of all worries and anxiety, and try to forget about pain.  I’ll keep you posted on how this goes.

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Categories: Depression, Energy, Fibromyalgia, Finding Balance.

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Heading Downhill Fast

December 7, 2009

Well, the last few days have been really bad for me.  But I have a plan.  So, I have something constructive to look forward to, and I’m hoping that it will work for me.  Basically, I quit taking my Gabapentin because I’ve gained weight on it.  Being in pain keeps me from getting the exercise that I know I need, so it’s a vicious cycle.  When I first started taking Zyprexa it helped my depression so much, but that has been about 8 months ago and I only take 1/4 of a tablet because otherwise I can’t wake up in the morning.  I had a really hard weekend (not that I did anything to make it difficult, it just was), and ended up going to bed at 7:00 last night and waking up still feeling tired at 7:45 this morning.  My daughter was very upset that I didn’t make supper last night, but I just didn’t have the energy.

This morning my mother-in-law came to get my son, as usual, and made me a cup of tea before I sat down to work from home.  I told her I’d been asleep since 7:00 last night and that I’m having a bad episode of depression.  She thinks I need to get back on my medicine and take more Zyprexa, and said that she would help me with meals if I agree to see a friend of ours who is a nutritionist.  This friend does it for a living, so we made an appointment for next Monday to meet with her.  The first meeting is 90 minutes, and the second one is 60 minutes—where she helps you actually lay out a plan.  My mother-in-law called my husband and he thinks it will be great, and that the whole family can do it.  If they don’t like it, they can make something else to eat.  Hmmm, not sure how that will go over, but it’s worth a try.

I do think what we eat has an effect on our brains.  The main reason I’m interested though is for weight loss.  I just can’t feel good about myself when I’m overweight, plain and simple.  I know it sounds superficial and nutty, but it’s the truth.  In my youth I was a ballet dancer, and I’ve already given up so much of that life by taking a job working in a bank and giving up teaching, I can’t stand looking at my pudgy self in yoga class either.  Hopefully this will help me out.  And my husband agreed to go to aquacise with me tomorrow night!

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Categories: Depression, Fibromyalgia, Support.

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Fibro Fog

December 5, 2009

Along with depression, fibro fog is the part of this illness that interferes with my life the most.  I found this article on brain fog and it spoke to me.  I could relate so well to many of the symptoms.

Brain Fog Symptoms

Symptoms of brain fog can range from mild to severe. They frequently vary from day to day, and not everyone has all of them. Symptoms include:

  • Word use & recall: Difficulty recalling known words, use of incorrect words, slow recall of names.
  • Short-term memory problems: Forgetfulness, inability to remember what’s read or heard.
  • Directional disorientation: Not recognizing familiar surroundings, easily becoming lost, having trouble recalling where things are.
  • Multitasking difficulties: Inability to pay attention to more than one thing, forgetfulness of original task when distracted.
  • Confusion & trouble concentrating Trouble processing information, easily distracted.
  • Math/number difficulties: Difficulty performing simple math, remembering sequences, transposing numbers, trouble remembering numbers.

My job requires a lot of time in conference calls on the telephone.  Often I’m not 100% sure what is going on because we’ve been reorganized and I’m “new”—how long will that excuse work?  I experience a lot of confusion and am easily distracted.  I take notes as best I can, although usually my notes only create more questions than answers.  Then comes the short-term memory problems…someone asks me about the meeting and I can’t even summarize what it was about.  Sometimes I can’t even recall what meeting they’re asking about, and I stand there looking stupid.  It takes going back to my desk, finding my notes, letting my mind relax a moment until it can sift through to the right meeting and (hopefully) come up with something semi-articulate to relate.

The thing that scared me more than anything was the directional disorientation.  I’d be driving home from work on a road that I knew fairly well, but it looks like any number of roads I’ve driven on in the different states where I’ve lived: just trees on either side of the two lane road, twists and turns and no real landmarks to speak of.  It would suddenly strike me that I wasn’t sure where I was.  I could be in Kentucky, or Indiana, or was I in North Carolina?  Yeah, scary stuff.  This would happen within the space of a couple of minutes and I’d remember exactly where I was, but during those few seconds it was like I’d gone out of my mind.

Fortunately I’m able to work my job and get things done on time.  I don’t know if anyone is aware of my confusion.  I don’t think they are.  But it scares me knowing that this has progressed over the last couple of years and that it could get worse.  What would I do if I couldn’t work?  My family depends on my income and mostly on the health insurance I get from my job.  I think we’d be okay financially with my husband’s job, but my girls will be wanting to go to college in the next four years and I know that’s not cheap.  My older daughter needs surgery for her jaw, and she wants to take a trip to Africa this coming summer (that I want her to take, too).  We’d have to cut back on some of these things if I weren’t able to continue working.

I just wish I had more passion for what I’m doing.  I know I’m lucky to have a good job in this economy so I shouldn’t be complaining and wanting more, but I hate feeling inadequate at what I do, and the confusion makes me feel inadequate 75% of the time.  How do other people with fibromyalgia manage this aspect of the illness in their professional lives?  Any insights would be gratefully considered.

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Categories: Fibromyalgia.

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Support from Extended Family

December 4, 2009

I’m very fortunate to have family nearby.  We moved to North Carolina to be near my in-laws, and a few years after we arrived my father-in-law was diagnosed with a brain tumor.  He passed away at the age of 60 in 2005.  My parents moved out here shortly after we did, and so did my sister and her family.

I know some people have a lot of issues with their in-laws, but my mother-in-law is an angel (just like my father-in-law is in the next world!).  She picks up my son every morning, packs his lunch, and takes him to a half day preschool, then picks him up from there and takes him home with her for the rest of the day.  At the end of each day she brings him home to us!  He’s only been going to this new school for about a month, and he has homework that’s due every Thursday.  This week on Wednesday night I asked him about his homework and his eyes lit up.  He said, “Nanny did it with me!”  He took it out of his bag and sure enough, it was done.

Last night I was worrying about what I should fix for dinner, and I’d been working upstairs in my office (it was a work from home day) so I didn’t hear my mother-in-law when she came in with my son.  After work I went downstairs and saw a big container of chili and some blueberry muffins that she had made for us!  Dinner was already done.  And she does this kind of thing fairly often.

Last week I missed some work unexpectedly when my five year old son got croup and his pediatrician sent him to a hospital in an ambulance!  He was kept overnight but is doing great now.  Anyway, another day this week my daughter needed to get picked up from school a little early so she could get to an orthodontist appointment.  I didn’t think I should take off more work this week, so I asked my dad if he could pick her up and take her.  He used to substitute at the high school she goes to, so he knew exactly where to go to get her for early dismissal.  After he took her to the appointment, he brought her back home.

My niece and her dad both have Fibromyalgia, too, so they of course empathize.  My niece is doing really great and spends a lot of her free time with my girls.  She’s a wonderful role model for them (she’s 25 and they are 12 and 15).

A couple weekends ago I had made up my mind to really clean my kitchen.  I was having a hard time getting started, but my mom and dad showed up out of the blue just to say hi.  My mom said she’d love to clean my stovetop (ha!) and spent a good amount of time scrubbing until it shined.  She even lifted it up and cleaned under the drip pans.  So nice!

Anyway, I just wanted to express my appreciation for the support I have from my extended family.  I definitely couldn’t manage a full-time job, a house and family without all their help!  I hope others with fibromyalgia are able to get similar support from their friends and family.

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Categories: Fibromyalgia, Support.

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Finding Your Balance

December 3, 2009

The hardest part about having fibromyalgia (for me, anyway) is figuring out how to manage my time effectively.  It’s impossible to say that I’ll clean up in the garage on Saturday when I have no idea how I’ll be feeling on Saturday.  I may have energy, and then again, I probably won’t.  It drives my kids nuts, because they are always wanting to fill in their evenings and weekends with fun things to do.  “What are we doing this weekend?” is my twelve year old daughter’s favorite question.  And I’m sure she thinks I’m the biggest stick in the mud because I always say that I hope we aren’t doing much of anything at all!  We live busy lives, and there is rarely a weekend when we aren’t participating in soccer or drumming lessons, hosting youth gatherings at our house on Friday evening, or attending devotions and children’s classes (and many times being the teachers for said classes) on Sundays.

For a young girl it’s hard to understand that Mom would prefer to get up slowly, maybe read a book, put some laundry in the washer, and drink her cup of tea without worrying about who has to be where when.  If I had the choice I’d probably become a real homebody with this illness.  But because we are always on the go, I have to take my breaks when I can get them.

This week looks like this, and is pretty typical for us.

Monday: Work at the office all day, volunteer 3 hours

Tuesday: Work from home, aquacise class in evening

Wednesday: Work from home, yoga class in evening

Thursday: Work from home, orchestra concert at middle school in evening

Friday: Work at the office all day, host youth gathering at our home in evening

Saturday: Aquacise at 8:15 am, host a study circle in our home (may include feeding them lunch), attend a birthday party for a friend’s son who is turning 16

Sunday: Attend devotions and teach children’s classes, yoga in afternoon

Not to mention all the other things that have to happen everyday, like homework, getting dinner, shopping if needed (usually someone needs to have something special for school the next day that they forgot to mention two weeks ago when they found out they needed it), etc.  My husband has decided this week that he will take it upon himself to put our son to bed every night.  I usually bathe him, but my husband will take him to his room and read to him and make up stories to tell him and stay with him until he is asleep.  My son can fall asleep faster than anyone I’ve ever known, so we’re lucky there.  Every night this week he has been in bed asleep by 8:00 pm!  It has given me a couple of hours every night to monitor how I’m feeling and handle household chores (or not) at my own pace.

I had a flare up, as I’ve heard other people call them, Tuesday after my first aquacise class.  My arms hurt so much I couldn’t fall asleep.  I felt pretty good pain-wise on Wednesday, but I was really fatigued and had to change my day to go into the office to Friday so I could stay home and take a nap during my lunch hour.  It’s like a juggling act trying to keep on top of all the things that need to get done in a day or in a week or in a month, making sure not to do too much on a good day or else you’ll pay for it the next few days with major pain and tiredness.

Whenever I get a chance I sneak in a nap.  I’m not sure if I do this only because I’m tired, or because I want to escape having to think about all there is to think about!  I’m still not sure my husband understands completely, because after all, I don’t look sick, right?  I know there are times when he’d like to go out and do something spontaneously, like go get a coffee together or catch a movie, but most of the time I have to turn him down because I know that I will pay for it the next day when I’m struggling to stay awake and work.

Does anyone else have any good tips on balancing the demands of life with the demands of fibromyalgia?  Please leave a comment or a link if you know of good resources!

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Categories: Fibromyalgia, Finding Balance.

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Aquacise

December 2, 2009

Last night I decided to try out an aquacise class.  We have a real nice facility in the next town over that my family belongs to, and it includes a gym and swimming pools.  I also take yoga there, which I’ll write about another time.  I have read that exercising in the water is good for people with fibromyalgia, and since classes are included in my monthly fee at the gym I made up my mind to go.

At first I was afraid I was the only one there, as the four or five other participants showed up a little late, a little later, and the last one a lot later.  It didn’t seem to matter; everyone was welcomed enthusiastically at whatever time they managed to arrive.  Most had swim shoes or swim sneakers as well as webbed gloves.  They had some gloves I was able to borrow, and the instructor suggested I try the class a few times before investing in the shoes.

One of the women was talking about having had botox in her neck for her fibromyalgia.  Has anyone heard of that before?  I piped right up and said that I, too, have fibromyalgia.  The instructor had invited me to come to a Thursday night class in the deep pool, but after she learned that I have fibro she suddenly uninvited me.  She said the deep pool is cold water and that it wouldn’t be good for me after all.

We did a lot of stuff and it was a harder workout than I anticipated, although I managed to keep up with everyone and not feel completely out of my league.  We seemed to work on the abdominal muscles almost the entire hour, and of course we did a lot of work with our arms.  We used the noodles in different ways—straddling them and keeping our legs out 90 degrees in front of us while doing breast stroke one way and reversing it coming back, wrapping it around our backs and sitting back in the water with knees bent as though sitting in a chair then opening and closing the legs for more abdominal workouts.  We bent the noodle into pretzels and then used them as resistance under the water to push up and down with our arms.

The end of class felt nice, stretching out a little bit to finish up.  My neck was a little sore and stiff from holding it up, but once my abs get stronger I think that will improve.  I went home feeling pretty good about myself.  There’s another class with a different instructor on Saturday morning at 8:15 and I think I’ll try it out.

At about 11:00 PM (class was from 6:00-7:00) my arms were in such pain I couldn’t sleep.  I tossed and turned.  At midnight I took a hot bath to try to relieve the stress, but maybe that isn’t a good thing to do…?  When I was younger I used to dance a lot, and I know that hot baths always soothed sore muscles for me then.  At 1:00 AM I finally took my Gabapentin which I had stopped taking because I was blaming it for causing me to gain weight.  At 2:00 AM I took an Aleve, too.  The last I checked the time before falling asleep was 2:30 AM, and when I woke up in the morning my arms felt much better.

I was supposed to go into the office to work today, but instead decided to make it one of my work from home days.  I can work from home three days a week, and it’s wonderful to have that flexibility.  Besides, it rained all day and I was so tired.  I napped during my lunch hour, and I definitely wouldn’t have been able to do that in the office!

Tonight I’m going to my usual Wednesday night yoga from 7:30-8:45.  It’s a great class at a good speed.  The instructor knows I have issues with my lower back and that I have fibro, so if she goes into something too advanced I feel fine curtailing my activities and sinking back into a nice child’s pose or cobbler’s pose to rest.  But yoga is another post.  Maybe Saturday I won’t use the gloves at aquacise…I’m thinking the resistance they created was more than my puny arms can handle right at first.  But I’m excited about the possibilities of water exercise, because the class is offered Monday, Tuesday, and Wednesday evenings from 6:00-7:00, as well as Saturday mornings.  I’ll try to go to yoga Wed. and Sunday and do aquacise two times a week, too.

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Categories: Exercise, Fibromyalgia.

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The Diagnosis

December 1, 2009

When my niece was diagnosed with Fibromyalgia, I went online to look it up to see what it was all about.  I was shocked.  So many of the symptoms matched my own and I was surprised my doctor hadn’t realized it.  He’d been treating me for depression only, which was my main irritation, but because of confusion and inability to think clearly he ordered an MRI and EEG which returned nothing unusual.  He was going to send me to a neurologist when I read about Fibromyalgia.   The pain at the specific trigger points, memory impairment, depression, restless legs, chronic fatigue, anxiety, irritable bowel, morning stiffness, and headaches clued me in quickly.  My doctor recommended a rheumatologist and the rest is history.

I found a great web site called www.fibrohaven.com and wanted to do something similar.  I want to post about alternative therapies that I’ve tried, in the hopes that it may help someone else who suffers in the same way I do.

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