Keep On Moving

Fibromites share a common sentiment—keep moving. This sounds counter-intuitive for someone who is in a lot of pain and possibly exhausted, but it really isn't. If you can get yourself in motion, everything starts to loosen up. If you get yourself in motion, your mind is most likely on other things than your pain and exhaustion. As long as you keep moving, even if you hurt, you can keep going. If you stop, it's all over.

Heather tries to stay busy, “This week I have been off from school. I really think that that’s the key—having things to do. If I wasn’t doing stuff this week, I would probably have laid around the whole time, gotten depressed. I’ve been applying for jobs in Des Moines so that keeps me pretty busy.”

It’s frustrating for Misha not to be able to keep going. “I’m a fast paced person and when I have to slow down, or when I have a couple of days when I don’t have anything going on I get into a funk. I’ll decide to watch a movie and then two days are gone. Then I get depressed and it’s hard to get back into things.”

Chris believes her hyperactivity is her way of ignoring the pain, “When some people hurt, they just might want to go lie down. I do the opposite. I become hyper. I think if I stay busy it is going to go away. It doesn’t. It is kind of a subconscious thing. I’ll get up really early in the morning. If I hurt really bad, I think the more I move as long as I don’t stop it will go away. I ignore it. Give me my ibuprofen, stick those pain patches on, and keep going.”

According to Francis, "If I don’t get up, if I stop moving I’m in trouble. That’s why I just keep moving. Because once you stop moving and try to relax then forget it."

Summer -

"-and the living is easy." --Gershwin

Summer is a time of sunshine, lounging at the beach or pool, barbeques, and vacations. Summer can also be easier for those with fibromyalgia. Generally, I have found that when the temperatures are warmer, my muscles ache less, but that doesn't mean I won't experience a flare.

Pressure changes, such as those caused by big violent thunderstorms, as well as the lack of sleep that accompany them when one hits in the middle of the night can trigger a flare. Flares can also be triggered by extreme heat and humidity. Add the normal stresses of living, and summer isn't always easy on those with fibro.

This is the first time that I missed a week of blogging. Summer is my busiest time of year. I own a vacation rental, and it takes time to manage the bookings and clean between guests. I took on two farm markets this year where I sell baked goods and my art work. Since I work out of my own kitchen and not a commercial kitchen, the baking can be tremendously exhausting. I care for my elderly parents, and I am trying to keep my writing and art going at the same time.

I ran out of steam. It's amazing how adrenalin can keep you going. Life doesn't stop because I feel tired and achy. I have been extremely tired for the past few weeks, but I had deadlines, so I kept going. I could feel the joints beginning to ache especially my trouble spots, the hips, shoulders, and elbows. Standing was sometimes excruciating. Taking bread in and out of the oven on a peel was very difficult. At times I though my elbow and wrist would give out.

I did it though, but I couldn't keep up the writing or painting. This past week I finally got a little ahead on the baking, and I crashed. After the market on Saturday, I was ready to sleep for a week. I managed a little cleaning on Sunday, but by today, I was pretty useless. I allowed myself some naptime today. I still feel achy, but I am coming back. The heat and humidity are high and that aggravates things. Tomorrow is another market day, and I will have to bake in the morning. Another deadline, another day, and I will meet the challenge tired and achy or not.

Starting Young

Most people, particularly women, are diagnosed with fibromyalgia between the ages of 30 and 50. For those who are younger than that, the diagnosis can have a significantly different affect on their lives, than for older people. Why is this so? I asked Kristy about this. She was in her twenties when she was first diagnosed.

Kristy was diagnosed, out of the blue,  in 2005, "I was 24 years old. I was working with small children and in March of 2004, I was injured -- or so I thought. I was unable to go back to work. I thought I’d take six weeks off and I’d be fine. Six weeks turned into twelve weeks turned into my doctor saying you are not okay to go back to work and you need to start looking at disability options. It wasn’t until I was sent to Strong Allergy Immunology that I was diagnosed with fibromyalgia."

Although the pattern sounds similar to other fibro diagnosis, the difference is in her youth. Kristy went to college so she could have a good career. She worked very hard, "I’m still in debt from going to college. Accepting that I wasn’t going to be able to follow through with a career was panic number one. I didn’t really have a chance to get into the workforce."

When Kristy attended fibro meetings, she couldn't relate. Not only was her career side-tracked, but what about family? "Everyone else already had a family. Who even wanted to date a girl with fibromyalgia? Other people already had children. I didn’t know if that was something that was ever going to be in my future. That was tough.

People would come to the fibromyalgia meetings and say, 'Oh I have such a hard time going to work and then coming home and cooking for my children.' and I’m thinking I can’t relate to that at all. I don’t have a job, and there are no children to care for. I can’t make dinner for myself.

I was very lucky that I found somebody. I found a boyfriend that was willing to accept me as I was. But I’ve also seen relationships break up for middle-aged people with fibromyalgia."

Kristy believes it is different for younger people. "Most of the people I have talked to seem to have gotten fibromyalgia after they accomplished all of these things. I got it before I even got to start."

Intermission: Irresponsible Pet Owners

When I started this blog, my intent was to keep it completely focused on fibromyalgia. That is still my intention, but I must take a side trip to talk about something that really gets my ire up--irresponsible pet owners.

About three weeks ago, on a cold rainy day, my neighbor called. "Laurie are you missing a cat?"

I looked around the room, "No, both of mine are comfortably dry in their armchairs."

"Smart cats. I have a very friendly tiger cat here at the barn. Do you know who it might belong to?

"I really don't. I'm afraid someone dropped off another cat."

I heard nothing more from Clair. Then two weeks later, about 4 am, there was a violent thunderstorm. I heard a cat meowing very loudly. I thought, "Emma, you silly cat, come in out of the rain."

After all my pets have a dog door. Being the prima donna that she is, Emma continued to meow loudly. Finally, I got up, opened the door, and voiced my thought. No response.

Fine! I went back to bed. A few minutes later, I heard "Mrrow, mrrow, mrrow," repeated very insistently.

Grumpily, I got up again, "Emma! Get in here!"

A little tiger-striped cat crawled out from under the car. It ran towards my out-stretched hand and started rubbing its head furiously. I picked it up, tooked it in, gave it some food, and went back to bed. I dreamt about finding a cat.

When I awoke, I thought, "Did I really bring a cat in last night." I walked into the kitchen, the food dish was where I left it, but no cat. I started looking around, and found it curled up on an armchair in the living room. I went down and said, "Hello."

It turned out to be a he, and he was a purring machine. He just wanted to be stroked. I fed all my animals breakfast. Put a litterbox near him, introduced him to it, and started baking. "I can't afford another cat," I mused.

He stayed on that chair all day. He must have been exhausted. Clair came by to cut the grass, and I said "Come here. I think someone you know came to visit." I was right, it was the same cat. He had been leaving food at the barn for him.

So if someone was feeding him, and he had shelter, why did he travel across the road and through the woods to my house? I have two spayed females. Although they are spayed, they still seem to attract the males. Last summer I had two large feral-toms hanging around. Where are they now? Most likely dead. Cats don't last long in the wild. This year I have another feral-tom, and this obviously non-feral tom trying to woo my two females. They aren't interested.

Obviously, the one I took in the other night was dropped off, "Here you go boy, fields to roam, lots of mice, a nice barn to sleep in. Have a good life."

What are people thinking? Most of the feral cats I see in the summer, do not reappear the next summer. Why? They get hit by cars, eaten by coyotes, or perish from disease, starvation, or parasites. Nice long life - one year, maybe two or three, if they're lucky.

My other cat Sophie is also a drop-off. She appeared one fall day. She had no intention of living outdoors. She wanted a home badly. I looked for an owner, but she has been here now almost two years. At least she was spayed.

The problem with the new guy, who I am now calling Spike, is that he is not neutered. He is a young cat with raging hormones. He left the chair after a day and headed out. The dogs make him nervous, but he's lovesick, and especially trails after Emma, bleating his little heart out.

He comes sporadically. He knows he'll get fed and petted, but he doesn't trust Sophie and the dogs. I have quite a few scratches from trying to lure him in as my dogs dart out to see what's going on. I know he's lurking around, but I can't get him to come consistently. He needs to be neutered, before his hormones kill him. Neither Clair or I think he hunts. He doesn't leave remains around like my other cats do. He is not street savvy. Cars scare him to death. All-in-all, he's a nervous little thing who needs a home.

He's welcome here, although the cost of upkeep will be difficult for me. I don't know if I can get him to stay. It is difficult integrating new animals into a family. Emma still hisses at Sophie.

Be responsible. If you can't keep an animal, for whatever reason, find it a home or take it to a shelter. Even if there's a chance the animal might be euthanized, at least it won't end up as roadkill or food for coyotes.

New York's Finger Lakes

A few weeks ago I wrote about my trip to the Upper Peninsula of Michigan where three of my interview subjects reside. I happen to live in the Finger Lakes region of New York state. This is where most of the subjects for my book reside, so I thought I'd give the area equal time.

The Finger Lakes are a series of long narrow deep lakes in the west-central section of Upstate, New York. Not being a native New Yorker, I find it interesting that anything that is not New York City, or a suburb thereof, is considered Upstate New York. Basically, Upstate New York seems to consist of 90% (just a guess) of the state.

These lakes were formed about two million years ago by southward moving glaciers that accentuated the existing terrain. When they receded, the lakes were left. The eleven Finger Lakes from east to west are: Otisco Lake • Skaneateles Lake • Owasco Lake • Cayuga Lake • Seneca Lake • Keuka Lake • Canandaigua Lake • Honeoye Lake • Canadice Lake • Hemlock Lake • Conesus Lake. My home overlooks Canadaigua Lake.

View of Canandaigua Lake from my home

Although Syracuse and Rochester are both slightly north of the Finger Lakes. They are the closest cities. Syracuse is the easternmost city and Rochester, the westernmost. Both cities are short drives to many of the lakes.

The beauty of the Finger Lakes is that athough it is a major tourist destination, it is relatively untouched. Unlike Lake George, NY in the northeast or Wisconsin's Dells, the area is not packed with congested traffic, tourist traps, amusement parks, and housing piled on top of one another. The area is still rural, primarily agricultural, and splendidly breathtaking.

The Finger Lakes are New Yorks largest wine making area. The gentle hills and warmth from the lakes, creates an ideal climate for growing grapes. Naples, NY, which is my postal address, is just a few miles south of South Bristol where I live. It is famous for it's Grape Pies and annual grape festival in the fall. Daily from the end of August until the frost takes the last of the grapes, tractors pulling crates of grapes and tall, triangular, grape harvesters drive pass my home. If you take time to smell the "roses," you'll realize the air is heavily perfumed by the grapes.

Winters are long, cold, and snowy. Temperatures can be quite cold, sometimes hovering in the teens for weeks on end in January and February. Although we occasionally have an indian summer or early spring, winter often comes too early and lingers too long.

If it's not snowing around here, it is raining. Sunshine can be a rare commodity, and summer can be too short. That is why the residents of this region relish summers. I have lived in a number of places, and I have never seen one with so many events of all shapes and sizes.

From a fibromyalgia perspective, although the winters here are not as brutally cold as Michigan's U.P. and are usually a bit shorter, they are still hard. The constant weather changes wreak havoc on the body. The humidity and winds that come with the pressure changes can be brutal. I know I savor the few warm, dry moderate days we have.

My interview subjects from this area range geographically from Seneca Lake in the east, up to the western side of Rochester. I have already included some of their interview excerpts in previous blogs. I am buried in baking and property management at the moment, so the writing has slowed down considerably, but there will be more excerpts from both the Michigan and New York people in the coming weeks.

More Weather

Summer teased us for a few days, but today it didn't get above 50 degrees until after 2 pm. Saturday evening rain and a cold front moved in. By Sunday it was cold and damp. I was exhausted and my limbs were very heavy. I didn't blame it on my fibro immediately. I had an extremely busy week. I could just be tired from all the activity.

By Monday I perked up. Although the temperatures remained in the 60s, the sun made an appearance. I felt pretty good. Rain came back that evening. During the night, I slept badly. I couldn't get comfortable, and my nerves were sending out all kinds of crazy signals. One minute my skin would ripple in various spots as though something were crawling on me, then I would get intense itching jumping from spot to spot--my neck, my arm, my chest. My whole nervous system seemed to be experiencing a short-circuit.

I was exhausted when I got up, but today was one of my market days. I needed to make five pies and pack for the farmers market. It was cold and rainy outside and the temperature was barely 50 early in the morning. I had things to do though and couldn't be dwelling on my fatigue, so I baked, then I sat down to work on a portrait I need to complete by next week.

After an hour, I noticed my upper back was aching. The fatigue was reminding me forcefully that it was still there. I was starting to feel nauseous from the discomfort. I had time for a brief nap, but it didn't really help. I just didn't feel good. No time to fret about it though, I needed to walk the dogs and head to the market.

Needless to say, I was a bit cranky when I got there. Although the sky was starting to clear, the wind was gusting. My brand new canopy, blew over my car. A number of vendors had to help me chase it down and set it back up. For awhile there, a warning rating was needed to let parents know that there might be adult language in my vicinity. Then the sun came out, the air warmed, and the wind settled, I started feeling much better.

A few weeks ago I discussed being a human barometer. This is a feeling that many people with fibromyalgia share. I start wondering what the health experts had to say on this subject. I couldn't find a lot of material, but interestingly enough, what I did find supported my feelings of being a human barometer.

According to the site, Fibromyalgia Symptoms, "Many fibromyalgia patients claim that changes in the weather directly affect many of their symptoms. In fact, many fibromyalgia sufferers claim that their symptoms vary according to temperature changes, changes in air pressure, and changes in precipitation in their part of their world." It goes on to state that five major weather conditions appear to affect fibromyalgia symptoms: temperature, barometric pressure, humidity, preciptitation, and wind.

Recently Joanie Hall of FARNY posted a link about the affects of sunshine on fibromyalgia, Sun Therapy for Fibro. In another of my posts, I claimed that sunshine makes me feel better. This article supports my claim. "The sun can soothe sore muscles and induces relaxation, but that's not all. A new study shows UV rays may also reduce fibromyalgia pain by triggering your skin cells to make more vitamin D." So although the weather can hurt, it can also heal.

I decided to see if anyone had researched the best places to live with fibromyalgia. This was inconclusive. It appears that many others wonder the same thing, but I couldn't find any research that studied the affects of region on fibromyalgia. I will be waiting eagerly for the conclusions if someone does study this.

Traveling With Fibromyalgia

I love to travel. I love going to new places and seeing new things. I even enjoy driving to the destination, because I can enjoy the countryside and take whatever I like along. The problem with travel is my fibromyalgia. I am a very high functioning, energetic person for someone with fibro, but I have to compensate for it.

I like to drive, but my trouble spots are the spot between my shoulder blades and my lower back. Driving to the Upper Peninsula of Michigan required 14 hours in a car, one way, for a total of 28 hours of driving round trip. I made very good time on the trip, but sitting for that long causes a flare-up of pain in my problem spots. My back tightens up, the pain radiates down my arms and up my neck. Sciatica flares in my legs, especially my right one, and the disruption of my normal routine can set off my IBS.

Knowing that these problems are likely, it is probably difficult to understand why I like to travel, but I do and I plan for it. First, I made sure I had enough muscle relaxer, Ambien, and Tylenol for the trip. I tend to use these drugs sparingly, but they are invaluable for combating the onset of a flare. Next, I made sure I carried foods I normally eat, so that my diet wasn't too disrupted. During the drive, I stopped briefly every two hours or so, just to get out and walk around. This helped alleviate the muscle stiffness.

Finally, I made sure I got adequate sleep. On the outward trip, I took both the Ambien and the muscle relaxer the first night, to give my body adequate rest after the drive. I woke up the first day in Michigan feeling quite good. I even got a nice bike ride in that day. My mistake that night was not taking a muscle relaxer after the bike ride. My arms went numb, and my second night of sleep was not as good as the first. I still managed to fit in two days of hiking as well as three interviews. I was doing pretty well.

Things started to fall apart at the end of the trip. My last day in Michigan, we spent a day traveling around the UP. I wasn't doing the driving, but being in a car for a whole day, aggravated the upper back.
The pain radiated up my neck into my jaw. I could feel the muscles spasms in my jaw. Throughout the day, I performed the isometric exercises I learned in physical therapy to settle the spasms. They helped a bit, but I could still feel the tension in my jaw. I couldn't afford to take a muscle relaxer that night because I had to get up very early the next morning to embark on my return trip. Muscle relaxers effects can linger and make you groggy. I settled on half an Ambien to ensure that I at least slept.

I was wide-awake for the entire drive back, but my back, neck, and jaw were knotted in pain by the time I reached Canada. My TMJ (temporal mandibular jaw syndrome) was the worse I had seen it in years. My head was throbbing so badly in Canada, I had to take some Tylenol. That dulled the pain, but didn't erase it.

If you watched me on the last leg of the journey, you would have seen me doing all sorts of gyrations trying to stretch out the tension in my neck and jaw. I made it home, and again I took the Ambien, more Tylenol, and my muscle relaxer. Miracle of miracles, I woke up the next morning pain-free. The muscle relaxer and a good night's sleep had done their work. The spasms had subsided. 

By planning for the worst, I managed to avoid a major flare, I avoided the fatigue of fibromyalgia, and I enjoyed the trip immensely. Yes, I had a few set backs, but back when I assiduously avoided drugs, the effects of travel were a lot worse. I would often be extremely fatigued, and it would take weeks to recover from IBS.

For some tips on planning for travel, google traveling with Fibromyalgia. I have included a link here to some tips: Ten Tips for Travel.

Michigan's Upper Peninsula

Last week I traveled to the Upper Peninsula of Michigan. Commonly referred to as the "U.P." My cousin is a neurologist in Iron Mountain, MI. She had provided me with three subjects to interview for this book. Combining work with vacation, I packed my car, headed up to Canada, and crossed into Michigan through Port Huron.



Marquette, MI -Lake Superior

Michigan is comprised of two peninsulas. The lower peninsula which contains two-thirds of the land mass is on the eastern side of Lake Michigan. This is where you will find Detroit and the other larger, well-known Michigan cities. The upper peninsula is on the western side of Lake Michigan. It is bounded by Lake Superior on the north, and Wisconsin on the south.


Mackinac Bridge

I entered the U.P. by crossing over the Mackinac Bridge. One of the longest suspension bridges in the world, the Mackinac Bridge crosses the Straits of Mackinac to connect the two peninsulas. Residents of the U.P. refer to themselves as "Yoopers" (U.P. -ers). They refer to the lower peninsula residents as "Trolls"--those who live "under da bridge."

The upper peninsula is heavily forested. The eastern portion, where I entered, is bounded on the south by Lake Michigan. The terrain is flat, sandy, and swampy. Characteristic of the whole region are large forests dominated by evergreens and birch trees.

One of the first things you notice after entering the U.P. is that you can purchase "pasties" every 100 yards. Be careful how you pronounce this! Large, doughy, meat turnovers, "pass-tees" not "paste-tees," are a regional staple. They were brought by the Cornish miners and adopted by all in the U.P.

As you move farther into the U.P., the land remains heavily forested, but the terrain starts to show gently rolling hills. To the north, it becomes more rocky. The U.P. is interspersed with numerous lakes and rivers, but be careful when you're hiking. The ticks are ferocious. I was crawling with them after hiking in the Lake Fumee Natural Area.


Big Lake Fumee

Because of the harsh winter climate, the U.P. is not suitable to agriculture. The primary industries are logging, tourism, and mining, although most of the mines are now closed.

In the early part of the twentieth century, Ford Motor Company had an Iron Mountain Plant. In the 1920s and 30s, significant amounts of wood were being used in the construction of conventional and steel-bodied cars. According to Henry Ford in his 1926 biography, "We used about a million feet of lumber a day."

The U.P. comprises one-third of the state's land mass but only 3% of the population. This remote, cold, and beautiful place contains warm friendly people. Mining attracted the Finns, Swedes, Danes, and Norwegians. To this day there is still a large population of Finns along with the only Finnish language station in the United States.

In the following weeks, I will be posting excepts from interviews with my three interview subjects from Iron Mountain, MI.

A Little Kindness

Becoming my parent's primary caregiver over the last year increased my stress and increased my fatigue. I started to wonder how do others deal with fibromyalgia? Are their symptoms like mine? Are they worse? Are they better? Have they found any treatment that is geniunely successful? Those thoughts were the premise for this book.

Fibromyalgia is a strange condition. For me, it is more annoyance than anything else. For others it affects every aspect of their lives. I've lived with the diagnosis of fibro for over 10 years, but I never paid that much attention to it. I'd get tired, I'd get achy, and sometimes my gastrointestinal track launches a major offensive. The bouts of IBS occasionally lay me flat, but the pain and fatigue I can usually work through if needed.

For those who are completed debilitated by fibro, there are often other problems as well. I have interviewed people with severe back problems, lupus, narcolepsy, and psoriatic arthritis. For them, fibro is just the icing on the cake. Their other problems are much greater.

It is so easy to say to yourself, "look at what that person eats. Look at how lazy he is. No wonder he has problems." To some extent that might be true, but the thing about fibro is if you could prevent it through proper diet and exercise, I wouldn't have it. It's like the old chicken and the egg argument. Are they overweight and out-of-shape because they hurt so much they can't exercise, or did they get fibro because they are overweight and out-of-shape. I do believe that proper diet and exercise keep my symptoms at  a minimum.

Often fibromyalgia is thought to have a triggering event such as a major accident or illness. Does that mean you're doomed to get fibro if you're in a serious car accident? A friend of mine worried about this. She feared another friend would develop fibro because she had a bad skiing accident. The problem with this logic is that millions of people experience these types of events and never develop fibro. Fibromyalgia only affects 1% to 5% of the population, so obviously there is something else involved.

Although there seems to be more and more evidence pointing to fibro as being a neurological dysfunction. The medical communty is still unable to determine a definite pathology. Before judging another person's appearance and lifestyle choices, we need to realize that fibro is not something easily preventable. It affects everyone differently. Unless we can occupy another person's body for awhile, we really don't know what anyone is feeling. We need to be kind to one another and listen.

Human Barometers

I once told a friend I can feel the weather changing. His response, which is his basic response to everything, was "You're full of #$*@."

I do feel the weather changes. I can't tell you what it is going to do, but I can tell you the pattern is changing. I think this is pretty common for anyone with chronic pain. Joints swell, the rheumatism acts up, and old injuries throb.

I bring this up because this weather is making me crazy. After a bitterly cold, wet, and dismal spring, I greeted the beautiful weather last week with enthusiasm. I cleaned the porches on my vacation rental house, I washed the siding, I started cleaning up some of the flower beds, I finally got out for a ride on my bicycle, and I took an invigorating hike with my dogs.

Just as a snake's metabolism speeds up, I basked in the sun, relishing it's joint loosening warmth. When I wasn't exerting myself, I enjoyed a meal or read a book from my deck overlooking the lake. Dermatologists may chastise me, but nothing makes my body aches feel better than the warmth of the sun.

Although Friday was still a gorgeous day, I felt the low pressure system roll in as a stabbing pain right between my eyes. As the thunderstorms arrived that evening, the sinus headache abated. By Sunday it was pouring rain, in the 40s, and the lethargy struck.

Am I tired and lacking ambition because of the fibro, or am I just sick and tired of cold-cold rain in mid-May? My body isn't really aching much, but I am listless and bored. Even though I have a huge list of indoor things that I need to do, I am ready to slither back into my nest and go back into hibernation. I'd nap all day, but I don't even feel enthusiasm for that. To all my fellow human barometers, my sympathy goes out to you.

Denial

For the last few days, I have watched a crazy male cardinal who is determined to defend his territory from his reflection in the window. Despite the fact that he crashes into the window over and over and must be quite bruised by now, he continues his assault. I hung up a towel to mute the reflection, but he continues on his mission.

Like the cardinal, it is easy for those who have fibromyalgia to also deny its reality. No one wants to have something that is difficult to treat. It doesn't help that there are many who don't believe in the syndrome either. Fibromyalgia is such a nebulous condition. There are so many things that share similar symptoms, which is why fibromyalgia is usually diagnosed by eliminating the obvious.

Recently, I had a physical. I went to the doctor hoping that I would have hypothyroidism. Why would I wish to be diagnosed with a chronic illness? Once again I was in denial, and I was looking for an easy fix.

Hypothyroidism shares many of the same symptoms as fibromyalgia, such as fatigue; increased sensitivity to cold; constipation; muscle aches, tenderness, and stiffness; and depression. The difference is that there is an easy fix for hypothyroidism, which there isn't for fibromyalgia. I was hoping that all I had to do was take a replacement hormone for the rest of my life and my symptoms would be gone. But alas, it was not to be; turns out I am revoltingly healthy.

Misha, like myself, tries to maintain a normal lifestyle. She hasn’t made drastic changes because she doesn’t want to. Misha considers herself an active person, she wants to be able to do things, and if it means she suffers a little, so be it, “for a while there I did cross-fit kettle bell training. If you’ve ever seen P90X (Extreme Home Fitness program), it’s kind of like that on crack − very fast paced. It’s really just 30 minutes of hell. Sometimes, I wouldn’t be able to walk afterwards. My point of view on it was I caused the pain. I’m the reason. I’m in control of that pain. I’d rather have that pain then the flare-up so it’s kind of a weird way of thinking maybe.”

Although Misha and I may not always accept our condition, we are a little better off than

that cardinal. At least we both eventually acknowledge the reality of the situation rather than continuing to beat ourselves up.

Excerpt from Heather's Interview

Heather is inspired by people who do great things and who really live life each day trying to make a mark and help other people—people who give whatever resources they have without worrying about the money. “Our whole society has just become so money crazy. We’ve lost sight of a lot of the more important things in life. So when I see on the news a really good story or something sad it inspires me.”

Politics and unfairness inspires Heather to write. “I really should have been a journalist because I have a thing about unfairness. So I’ve written letters to the editors and stuff like that. I would like to be a writer and editor. Ultimately I hope I can get into that.”

Her girlfriend is one of those inspirational people, whose selflessness helps Heather to cope, “Despite being on disability, she takes care of her home, helps her parents, and volunteers at the dialysis center at the Des Moines Methodist Hospital. Her kidneys stopped functioning. She went through years of dialysis and eventually got a kidney from her own mother.”

Another method Heather uses to cope is to stay busy. “This week I have been off from school. I really think that that’s the key—having things to do. If I wasn’t doing stuff this week, I would probably have laid around the whole time, gotten depressed. I’ve been applying for jobs in Des Moines so that keeps me pretty busy.”

Heather feels her fibromyalgia is not as severe as it can be for others. “I do think people get it in different degrees. But I also think it’s the effort. I push myself to try to do things, even if I don’t want to.”

Support

I am finally coming out of my slump. I am managing normal activity, but still slow at getting up in the morning, and my energy still flags early in the evening. I can attribute some of this recovery to trying to pace myself more. This is difficult for me, because I have only two settings -- On or Off. The other factor is that I have made some human contact outside of caring for my parents and spending my time with all their medical professionals.

Yesterday, I spent a nice morning with Carol Goldstein, the owner of Mackeral Sky Books & More. Carol provided some valuable critique on the stucture of this book. More importantly, she provided me with some pleasant companionship.

It is easy for me to isolate myself from people. The fibro can make me tired, achy, and grumpy to the point that I don't feel fit for society. I am also naturally introverted and generally happy doing solitary things. I was raised in a family with very defined restrictions on "airing dirty linen in public." You don't talk about your problems with strangers. My family's definition of a stranger is a medical professional or anyone not a member of the immediate family. Reaching out for support to a friend is just unacceptable. Although I don't personally believe that, it is so ingrained in my personality, that it is very difficult for me to ask for help.

Everyone needs some kind of support. Even if it is just a kind word when you are having a bad day. People with chronic pain or disabilities, can need even more support. Sometimes there are things they just cannot do themselves. That is when having a friend or family member that you can comfortably ask for help is invaluable.

Because Misha’s mother, sister, and neighbor also have fibromyalgia, she has always had their support. They often share treatments they have found successful with one another. Her in-laws have also been very understanding, and when they were able, often helped with the children when Misha was unable to get out of bed or leave the house.

For Andrew, his wife has been his foundation.With three children to raise, two girls and a boy, his wife bore the brunt of it.  “They didn’t really have a father. I couldn’t do the things that others do. I couldn’t play, I’d roughhouse with them for about 30 seconds and that was about it. My wife had to bear most of the responsibility for taking care of the kids, because I just couldn’t.”

Chris had no support from her first husband. He didn't even believe there was anything wrong with her. With her new husband, life has turned 180 degrees. “He’s wonderful, he’s very supportive. I was one of the fortunate ones when the family divorced and the kids blended. He is just 100%. In fact he will go to the doctor with me and he will go in and say ‘The first thing I’m going to tell you is that if you tell her that it is all in her head, this is going to end.’ He says, ‘I’m telling you it’s not.’ In fact the chiropractor that he took me to is his. He sat back and said ‘she’s been dealing with this headache for two years. It’s not all in her head’.’’

Heather relies on her girlfriend with lupus, "She understands what I go through and she offers good tips as well as acceptance of my syndrome."

Knowing you have someone to talk to, who will provide you with unconditional, non-judgmental support no matter how many times you've whined about the same thing, is extremely important for someone with chronic pain. We aren't always looking for answers. Sometimes we just need a friend.

Guilt

Everyone whether they have fibromyalgia or not experiences guilt at some time in their lives. For people with chronic pain, guilt is insidious.

For myself, fibromyalgia is a trip of pain, frustration, and guilt. I am frustrated by wanting to do more, and not always being able to. I hate it when people set obstacles in my way, and that’s what fibromyalgia does to me. Control is important to me, but fibromyalgia takes control out of my hands. Often I don’t feel I am doing as much as I could do. Just as an alcoholic might place the blame for his irresponsibility on his disease, fibromyalgia can seem like an excuse for laziness or weakness. I have guilt feelings that I use it as a crutch when I can’t keep up with others. Although I know my symptoms are real, guilt is an unfortunate side effect of the discomforts of fibromyalgia.

For Misha the guilt can be overwhelming when she feels she’s not doing her best because of a flare. “Be a good wife. Be a good mom. So when I can’t, when I have a flare-up, it gets me really depressed because I feel like I should be able to do more. If I’m feeling really bad and my daughter has a day off from school, and she wants to actually spend time with me, and I can’t, then I feel really guilty. Those moments are few and far between because she’s a teenager.”

Although Andrew's congregation provides him with a great deal of warmth, compassion, and understanding, it is difficult not to feel guilt. It comes with the territory. “No matter how bad you feel, don’t you find it difficult at times to justify that you just can’t do it? And you think to yourself that I probably could if I just put a little more effort in to it. That’s a very common reaction. And it’s not one that just dissipates over time.”

Motivation

"By this you see that good success does not always depend on pains, but on the will." -- Peter the Great in a letter to his son referencing the Tsar's sickly brother's love for horses.

One of the questions I have been asking those I interview is, "How do you motivate yourself when the pain and fatigue is overwhelming?" Some turn to God, others to their families, some just allow it to happen -- riding out the wave, knowing it will eventually pass, and some reach deep down inside to some inner well-of-strength.

I could use an inner well-of-strength right now. I am tired, or burnt-out, or depressed. Maybe all three. It is so hard to say sometimes. Am I feeling burnt-out and low because of the fatigue, or am I fatigued because I am burnt-out and feeling low?

The weather this spring certainly hasn't helped. It has been mainly cold and wet. This type of weather is always hard on my fibro. My father's heath has been a roller coaster ride too. Dealing with the illnesses and the emotional turmoil that accompanies each bout is exhausting.

Two things that absolutely drive me, though, are the need to care for my pets, who are my children, and the need to care for my parents, however exhausting that may be. I am like a donkey being led by a carrot. I keep reaching for the carrot, but whenever I get near, it gets snatched away. I need to catch the carrot soon. I need something really good and exciting to happen and re-energize me. I need to reach down inside me and find a little more strength.

Fatigue

I have sailed into the doldrums and in the center of this devastating calm is a freakish whirlpool that is sucking me down, down, down; down towards calm enticing oblivion. I am so tired.

I am so tired that writing this is extremely difficult. I struggle over every word. My body is heavy, a little achy, but not so much so. It is just an effort to do anything. All I want to do is sleep. I feel no interest or enthusiasm for anything. I don't have enough energy.

This is how the fatigue of fibro hits me. It comes on suddenly. Once it arrives there is no way out until it passes. Even when I see the storm moving in, like I did earlier this week, I can't always dodge it. Fortunately because I was already feeling overwhelmed, I had planned some down time. Maybe I could have taken things slower last week, and this wouldn't have happened, but you never know. I don't want to lose the opportunity of getting a lot done when I am feeling sharp and energetic.

I've actually had two nights of what passes as decent sleep for me, but that's what happens with fibro fatigue, it's not enough. I need to vegetate for at least a day or two.

Sometimes these periods go on for months. I get through the day, doing what I absolutely must, but no more, but I am not at my sharpest mentally or emotionally. During these periods, I'm like Humpty Dumpty. My emotions are so fragile, that if I fall, I'll shatter into a thousand pieces.

All I can do is rest as much as I can this weekend, and hope my energy returns by Monday.

Slowing Down

I am overwhelmed. I am so overwhelmed, that my mind and mouth are racing so fast, I think I just exhausted one of my friends just by talking to her. I am overwhelmed because there is so much to do right now.

I need to get my rental property opened for the summer. This means cleaning it, making necessary repairs, and getting the grounds in order by Memorial Day weekend. This is extremely important, because this property is my primary source of income for the summer.

In the past year, because of my father's declining health, I became my parent's primary caregiver, which has limited my employment options. I need more flexibility than most employers will permit. If I take a full-time job, for reasons that are beyond the boundaries of this blog and my personal privacy, family dynamics will require that I still take care of my parents in addition to that job. That probably won't end well.

I am feverishly working on two books. I really need to publish and sell these books. Establishing myself as an author will fulfill a life-long dream, help my sagging self-esteem, and provide me with the job flexibility that I need.

I am an emerging artist, previously a hobby, that is also another dream of mine. Getting known as an artist and even selling a piece takes a lot of time an effort. I am trying to sell my work on Etsy in my shop, Cheshire Inn Creations. I also have an exhibit of my artwork at Tango Cafe coming up in May that I must prepare for.

Another odd talent I have is baking. This talent emerged during my years as an innkeeper for a bed and breakfast (the property I now rent). I like to bake. I find it very therapeutic. To generate some pocket money last summer, I started selling some of my baked goods and ended up with a booth, once-a-week, at the Mendon Farmers Market. Since I will be there again this summer, this too requires preparation. 

So my loyal readers, I have just multi-tasked by putting a plug in for everything I'm doing. With this list, why would I possibly be overwhelmed? Obviously, I have too many irons in the fire. Get rid of some of them you might say. Focus! Slow down! What's the rush?

The rush is I am running out of funds. Taking care of my parents has taken a financial toll on me. I feel a real urgency to accompish something that will generate a living wage, but I also need to take any work that comes my way to make ends meet. Freelance editing, if I can find it. Custom portraits, ad hoc catering help and selling bake goods, just to pay the bills for one more week. It's demoralizing. I have an MBA, and I feel like a total loser some days.

So other than using today's entry as a forum for venting all my frustrations, what does this have to do with fibromyalgia? STRESS. Stress is a trigger, and boy am I priming the barrel.

Yesterday I interviewed Kristy. Kristy is about 30 years old. Old enough to be a young-woman, but young enough for me to think of her as a kid. This kid has a lot of sense. She felt fibromyalgia was a gift, and I am now paraphrasing, because I just don't have time to review my interview notes and recordings for her exact words, It is a gift because now that she understands what's wrong with her she doesn't push herself so hard, she's enjoying life more. It is okay not to do everything. I could learn a lot from Kristy.

So I am giving thanks to Kristy tonight, I am still feeling overwhelmed, but I am stopping to regroup. Last night instead of trying to finish my to-do list when I was running on empty, I acknowledged the pain and stiffness in my back and elbows. I did only what was absolutely necessary, then I sat down and watched a movie. I took an Ambien, turned off my alarm-clock, and allowed myself to sleep in. My pets only let me sleep to a point, but I feel they were rather generous.

This morning, I looked at my to-do list, and determined what was absolutely necessary. This entry being one of the items. The rest can wait. I will do the same tomorrow, and I will sit down at some point during the week and pare down my tasks for the next few weeks. That might mean, that to get the house open, I set the books aside for a couple of weeks. I need to take the pressure off myself and accept that I can't do it all, at least not at once.

An excerpt from Chris's Interview

It was the 1980s, fibromyalgia was relatively unknown, and Chris was in her first marriage when she was diagnosed.  “At that point in time, I was a stay-at-home mom. I had a toddler and a baby, and I babysat at home. It was a very stressful time.”

Her husband’s company was sold requiring him to take a large pay cut. On top of that, their daughter, the baby, was very ill with asthma and breathing problems. “My husband didn’t handle that very well. She was my full responsibility. It just became a very stressful situation for me. It was like it was my fault she was sick. Then I got very very sick with the flu.”

Despite her illness, her husband continued to work every day. Chris was expected to care for the two little ones. “I kept going and going and going. I ended up with viral meningitis.”

After that, Chris never seemed to stop aching and the headaches wouldn’t go away. “I went to a doctor in Farmington, that’s when he diagnosed fibro.”

Chris was too busy to pay much attention to this diagnosis. “You don’t have time to take care of yourself, so you just keep going.”

She kept going for five years. During this time, her husband even accompanied her to the doctor, but he never believed anything was wrong with Chris because she kept going.

For five years, Chris ran on autopilot. Her husband eventually changed jobs, but he hurt his back and had to have surgery. Chris had to pick up some of the slack and work too. “So for five years he would go to work. He would come home, and I would go to work. We had one vehicle, and that became hard because my daughter just wanted nothing to do with him. He hadn’t helped when she was a baby. She didn’t like staying with him. Looking back, I really don’t remember a lot of it.”

January 2, 1989 gave Chris a reason to start piloting her life again. “I had talked to him about getting counseling, trying to make the marriage work, but he decided domestic violence was the way to go and put me in the hospital. I never turned around and looked back.”

I asked Chris who had called the ambulance? “He (husband) finally did about two and a half hours later, after I couldn’t move. The kids were in the house but it was 2 o’clock in the morning.” 

No charges were filed, “because back then it was different and his mother had the kids. We lived next door to his parents.”

Most of the damage occurred to Chris’s right side. At first the doctors thought her husband might have ruptured her kidneys. Because the right side was injured so badly, she still has problems with that side of her body to this day.

Chris worried constantly about her children and left the hospital as soon as she could. “His (husband’s) mother had the kids. I wanted to just get home and get my kids. I wanted to get my kids away from him.”

Once Chris was discharged, her parents took her to their house and then they retrieved the children. “That’s when I called the lawyer, and she came to my mom and dad’s house. We filed the order of protection, and then I filed for divorce. I was still under 24-hour care even after I left the hospital.”

Chris spent a month healing before returning to work. Although she still wasn’t ready, she had to keep going. “I had to take care of my kids. I made it through that. I got a full time job.”

The Unexpected

I awoke to the phone ringing stridently in the living room. The ring was ominous, although I know a ring can't convey feeling. I stumbled blindly to the phone and looked at the display. It was my mom. I could feel the anxiety rising like bile from the pit of my stomach.

"It isn't an emergency," she said. I looked at the clock, it was 12:30 am.
"Of course it's an emergency I replied, "otherwise you wouldn't call at this time."
"You're father is still having diarrhea. He doesn't need to go to the hospital, but I need you to pick up something from the pharmacy for the diarrhea."
"It's been two days. He's going to be dehydrated. He'll need fluids."
"Just get the medicine, we'll see how he does through the night."

So at 12:30 am, after throwing sweats over my pajamas, tracking down all his health records, and adding anything else into the bag that might be handy while waiting in an emergency room, I headed out to Wegmans.

Unfortunately, this has become a routine over the past year. My dad has been in and out of the hospital so much, I basically have a bag waiting like an expectant mother.

I found the Imodium and headed to my parent's house. My mother insisted the diarrhea only recurred after dinner. It hadn't been continuous since its start on Monday morning. I wasn't sure I should believe her. My parents don't always tell me the truth. They know I'll go to the hospital if I think it is necessary.

I was tired though, and not looking forward to sitting endlessly in an emergency room. So I administered the medicine, explained to my mother what to do if my father needed more, made my father drink some water, and headed home. My expectation was I would get up in the morning, walk the dogs, and plan on spending the rest of the day at the hospital.

Then I "prevented." This is a term you will see when I post an except from Chris's interview. Chris prevents, and I did too. There is so much information on why you must reduce the stress in your life, and how to do it. Although there are stressors I believe you can control, no matter how much yoga and deep breathing I do, I can't prevent stress from external factors such as acts of God and other people. I have no control over these things.

And invariably, "when it rains, it pours." How often in your life has the car broken down, a family member taken ill, the hot water heater died, and the dog decided to poop on the neighbors lawn, in front of the neighbor? With all these things happening within 48 hours.

Taken individually, you could probably handle each of these events, but the Fates have a bizarre sense of humor, and usually like to lay it on you all at once. That's when you start popping the Xanax if you want to avoid a nervous breakdown--actually, I have never taken Xanax.

So no matter how much you try, stress happens. When you have fibromyalgia, stress has a bigger impact. It can trigger a flare. So as Chris says, "I prevent."

I didn't know what was going to happen in the morning, but I needed to be rested and ready for anything. I came home. I took half an Ambien, just enough to knock me out and make sure I didn't lie in bed all night with my heart fluttering rapidly like a captive bird.

Sleep is normally elusive for fibromites. With added stress, it can be completely non-existent. These are the times when a sleep-aid is invaluable.

The phone rang again at 7 am. I thought, "Oh no, we're off to the hospital."
But it was better news, "The diarrhea stopped after he took the first dose of the Immodium, he slept through the night. You don't have to rush over."

I'm not completely sure I believe her, but I will use the reprieve to take care of the necessities before I head over. Never fear, my emergency room kit is in the car.

Excerpt from Andrew's Interview

According to Andrew’s faith, Jehovah comes first, followed by his wife and family, and then his congregation. This forms the basis for Andrew’s life and actions.

Before becoming Witnesses, Andrew and his wife thought the ideal marriage required putting your mate first. They learned that was not the right approach. “Talking about believing, that is what I mean. It’s important that Jehovah is ahead of everything in our lives. Once you do that it grows exponentially. I consider without a shadow of a doubt that I love my wife more now than I ever did before. Hopefully, it is only the beginning, it has only been 30 years, and I expect and hope we will go through all eternity, and I think about the time that God gives us to finally know and understand each other.”

Andrew believes his marriage is made of making mistakes, “helping each other to the best of our ability, and that entails primarily working with each other in getting to the meetings. She helps me to go out in the door-to-door ministry. We study together every week.”

When you remove Jehovah from the conversation, fibromyalgia has the next greatest impact on Andrew, his family, and the lives of the people who care about him. “It is just so pervasive. How many people do you know who have fibro, full blown, and are dominated by it? I would have to say our lives are not dominated by it. Our live are dominated by service to Jehovah, but the impact that fibro has on our lives is so extensive. It’s kind of like I look at what Satan does to the world around us, there’s a lot of similarities between that and what fibromyalgia does to people. It’s just evil, plain and simple. My family has paid as great a price for fibro as I have.”

Of Andrew’s three children, the oldest was diagnosed at age thirteen with fibromyalgia. Although the other two have not been diagnosed with it, he is strongly convinced that they both have fibromyalgia. “But after seeing me, they don’t want to have anything to do with it. In quiet moments they have acknowledged that they have many of the symptoms.”

Flare-ups of his fibromyalgia could put Andrew into a vegetative state that lasted two to three months. During these flares, his life consisted of getting up to eat and to use the bathroom. The rest of the time he was in bed. When he started to lose contact with the congregation and with serving Jehovah, he realized he was dying physically, mentally, and most importantly spiritually. “So I determined that no matter what it took, I needed to get to the meetings. I started sleeping, a whole day or maybe two or three whole days to get to a one hour meeting.”

Although the congregation provides him with a great deal of warmth, compassion, and understanding, it is difficult not to feel guilt. It comes with the territory. “No matter how bad you feel, don’t you find it difficult at times to justify that you just can’t do it? And you think to yourself that I probably could if I just put a little more effort in to it. That’s a very common reaction. And it’s not one that just dissipates over time.”

When Andrew doesn’t feel like going door-to-door, he has to wonder, “Is it because of my fibro? Is it because I am feeling lazy? It doesn’t go away. Jehovah asks of us not one bit more than we can give, but we are the ones who determine what we can give.”

His greatest fear is the fear of failing to serve Jehovah, because of the disease and his human frailties. Andrew does not want to disappoint God. “That I might disappoint him in not being able to do the relatively simple things he requires of us. It’s not like he ever asks us to do more than we are able to do, but we can come to a point where we feel that we cannot do what he has asked us to do, and that is my real fear.”