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.”

Over the Hump

Amazing the difference a day or two can make. The IBS is under control -- for the moment. I finally got a decent night's sleep, and I woke up with some enthusiasm this morning. I managed to ski for three hours in nice spring conditions, lunch on the deck with my friends, and take my dogs for a nice long walk.

The funny thing about writing this blog is that I feel like I have come out of the closet with my fibro. It is something I have only mentioned in passing with a few close friends, and something I rarely talk about in detail, even with them. Now I am talking a great deal about it. I don't give every graphic detail, but I am exposing myself more.

It's uncomfortable. I want to spread awareness of fibro, but I really don't want people to look at me as a victim. I actually don't want people looking at me at all. I have always been uncomfortable with too much attention.

The other problem is the well-meaning people who all have solutions to my problems. The solution that amused me the most was from an acquaintance who was pushing me towards all kinds of supplements that are supposed to reduce inflammation. Although well-intentioned, fibromyalgia is not an inflammatory disease.

To paraphrase morning talk shows, when women vent, they just want someone to listen to them. Women don't always want a solution. Men always feel that they must provide a solution when a woman shares her problems with them. That is what I am finding as I keep this blog. I am not really writing it hoping that someone will provide a solution to all my problems. I am writing it to gives others a chance to see what living with fibro is like from one person's perspective. Ultimately, that is the purpose of this book, to share a number of perspectives so as to provide a little insight into what it is like to suffer from a chronic pain syndrome, especially one that has no outwardly noticeable characteristics.

Tomorrow, I plan to spend another day enjoying the sunshine while skiing and picnicking with my friends. Let's hope I stay over the hump for a nice long while.

Staying Motivated

In the musical Evita, Evita sings the following line to Juan Peron,  "Sometimes it's very difficult to keep momentum if it's you that you are following." That is exactly how I am feeling now. Although not unexpected, the rejections for both books I am working on are rolling in.

The fatigue that has been building for the last couple weeks is here in force. I am functioning, I am making myself do things, but I am in a state of utter exhaustion. The pain isn't bad -- yet. The trigger for this fatigue is IBS. The discomfort from the flare-up of my IBS is keeping me from sleeping at night. There's no point in using a sleep aid, because I wake up regardless, almost hourly. It's been that way for a few nights now. I want to sleep. I fall asleep fairly easily, but I cannot stay asleep. I can't even nap. There is too much discomfort in my belly.

I try to keep going, but my mind is fogging. I find it difficult to concentrate or make coherent conversation. I left my notebook behind while running errands today. I had trouble navigating a shopping cart through the store. It made me wonder if I should have been driving, but I made it home safely. My memory is shutting down. I walk into a room to do something, and I stand there staring blankly. Writing this is extremely difficult. My fingers stumble over the keys, and I fight to remember what I want to say.

I need a good night's sleep, and until the IBS settles down I won't get it. Everything is starting to feel a bit overwhelming, I hope I can kick this flare soon and regain my earlier energy for this project.

To medicate or not to medicate?

How is fibromyalgia treated? Should you medicate yourself? I can point to the treatment methodologies, but I can't answer the second question. Treatment is very personal and varies dramatically from person to person. I personally don't like to take drugs but at times it is inevitable.

According to the Mayo Clinic, "In general, treatments for fibromyalgia include both medication and self-care. The emphasis is on minimizing symptoms and improving general health."

Medication is used to reduce the pain and improve sleep for fibromyalgia sufferers. These treatments range from your common over-the-counter pain killers, to sleeping pills, muscle relaxers, anti-depressants, and anti-seizure drugs.

My personal course of action has been to try and minimize pain and maximize sleep. For me, maximizing sleep is the most difficult part. When I don't get enough sleep, the pain is worse. I can't tell you which came first, the pain or the lack of sleep, but as I get more tired, I become less able to deal with everyday life. It becomes more difficult to concentrate, I become irritable, and everything hurts. If I don't deal with the sleep, symptoms become progressively worse. Simple tasks begin to look insurmountable.

I don't like to take drugs if I can avoid them. I tend to be very sensitive to the side-effects of most medications. Self-help gurus will point you towards diet, exercise, supplements, holistic treatments, and alternative treatments. To some extent I agree with this. But no matter how healthily I try to live, sometimes I need more help to function normally.

For the most part, I'm a pretty healthy eater. My downfall is sweets, and I have been trying reduce the amount of sweets I eat. I know from experience that too many sweets affects my IBS. I also exercise regularly, and I have added yoga to the mix in the last year. I practice all the techniques they advise for adequate sleep. I love massage, but unfortunately, my insurance doesn't cover it, and I cannot fit it into my budget right now. Even with all my attempts at living healthily, my nervous system doesn't function quite right, and sometimes it needs a jump start. This is where medications come in.

I have been lectured by well-meaning friends on the dangers of using sleeping pills. All I can say is that although your advice is well-intentioned, I can't get a good night's sleep on my own. My body doesn't work right. Spend a week in my shoes, and see how well-rested you are at the end of it. Sleeping pills are not a panacea. They stop working if you take them daily. Used for the purpose of allowing myself to make up lost sleep, they are invaluable.

Muscle relaxers have the added advantage of making me sleepy while relaxing my muscles. Add some acetaminophen to the mix at bedtime, and often I have very little pain at night.

With sleeping pills, muscle relaxers, and a pain killer I am treating my symptoms. They are not cures, but I do not have to take any of these drugs daily, and the side effects for me are negligible.

I sometimes consider taking anti-depressants. They are used not for treating depression but for treating the pain and sleeplessness of fibromyalgia. Using these types of medication require much more consideration for me. They are used long-term and can have many adverse side-effects. Sometimes the cure can be worse than the cause. The same can be said for the new drug treatments for fibromyalgia you hear advertised on TV.

Many fibromyalgia victims use narcotics. For me, that is not a viable option. It is very difficult to function on narcotics, they have a lot of side effects, and they can be quite addicting. My pain is not great enough to ever take that course, but for some it is an option.

To medicate or not to medicate is very personal. Before you chastise someone for the drugs they take, consider that person's daily quality of life. Living in constant exhaustion and fatigue is disabling and mind-numbingly depressing. There is no joy when you hurt all the time. Each person must make his or her own decision about treatment under a doctor's care. The most anyone else can do is support that person and not belittle his or her choices. 

An exerpt from Misha

Being used to running around and doing a million things, Misha has always felt that she had to be good at everything. 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.”

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. Unfortunately her mother-in-law now suffers from Parkinson’s disease, and Misha prefers not to burden her with any additional stress. “I used to rely on my mother-in-law. She was a really good sounding board. She was always good to talk to, patient with me. She always had good ideas and was never judgmental.”

Her immediate family has been a little slower to come around. Two of the girls are less than understanding, but the other two seem to realize something is wrong. Her husband has also been slow to come around. “My husband used to joke and call me fibro mom. Sometimes I didn’t like to tell him because he’d say, ‘Really something else is wrong? You’re falling apart.’ We’d be joking around, but it hurts. I can’t help it. If I could I would.”

Unfortunately, his eyes opened to her suffering after he started experiencing issues with depression from an old back injury. Initially, they each dealt with their physical pains separately. “He got to the point where he couldn’t get out of bed, lacked motivation, and was very tired. Before that, he never understood depression or the fibromyalgia. He’s starting to get a bit more understanding. The difference, now, is that we have learned to help each other through our physical pain.  We’ve learned to recognize when one of us is hurting really badly. We pick up the slack for each other.”

Misha’s husband is her best friend. “We’ve been married almost 11 years and been together for over 15. He’s pretty good to talk to. He is the one that reminds me to slow down sometimes, to take care of myself.” 

This and That

The Meeting

Last night I attended a FARNY meeting. If you've been reading my blog, you might think I am very active in this support group. To be quite honest, I really haven't had much interest in support groups before I started this book. I decided to be informed, I should get a little involved. I have been pleasantly surprised so far. Rather than a bunch of people griping about their pain, FARNY has topical speakers who present valuable information on managing fibromyalgia. The speaker last night was Dr. Antignano a local gastroenterologist. His topic was IBS (irritable bowel syndrome).

Why would someone with fibro be interested in IBS? In my case, I have it, and find it quite frustrating. I also knew that it was common in fibromites. As a matter of fact, it is so common in fibromites, that according to Dr Antignano, one in five fibro sufferers also has IBS.

Does fibro cause IBS or vice versa. That is unclear, but what I found fascinating was the fact that both syndromes appear to be disorders of the sensory nervous system. I had known that to be true of fibro, but this was the first I had heard this of IBS. In both cases SSRIs have been successful in treating these conditions. SSRIs are what we know as anti-depressants. Does that imply that IBS and fibromyalgia sufferers are depressed? Maybe, I'll get to that shortly. In these syndromes, the reason that SSRIs are successful is because there is too much information getting to the brain. Seratonin helps regulate this.

Depression

Are IBS and fibro victims depressed? Is depression a symptom of these syndromes? If you look at definitions for these diseases, you will see that depression is often associated with both. Do I, personally, think it is a given that if you have these syndromes, you will be depressed or if you're depressed you will have IBS and fibro? I think it is a bit of a no-brainer. In my opinion, if you have either of these syndromes, you're going to occasionally get depressed.

Who wouldn't get tired, irritable, angry, or down in the dumps when gassy, crampy, and bloated all the time. By the same token who wouldn't occasionally get down, when fatigued and achy all the time. I think it is perfectly normal behavior. On the other hand, when the depression gets to the point that it starts affecting your daily life in a dramatic way, then you should probably seek help. I don't think it is out of the ordinary for anyone to feel down for a few days or even a few weeks. Stuff happens, and it is not always good. Rest easy though, if you're depressed, you are not immediately doomed to suffer from IBS or fibro.

DST and Fatigue

This leads me to how I am feeling. I am down. I am not sleeping well, and my IBS is worse. I have to say that my IBS sometimes disrupts my sleep even more than the fibro. The high I was on a couple of weeks ago is waning. It is hard to know what to blame.

DST often leads me into chronic fatigue. The changing seasons, especially winter into spring is always hard on my fibro. The weather sucks. It is the end of March, the temperature was in the mid-20s today, and the landscape is white. I'm a skier and should be loving this. Instead the cold is making my muscles achy, or maybe it is the fatigue. Either way, I am longing for warm temperatures. I want to see green grass, no mud, and I want to work in my yard. I am tired and cranky!

So now, feeling the way I do, and armed with new information from last night's meeting, I am debating whether I should reconsider my stance against anti-depressants. If an SSRI, could help with both the IBS and fibro symptoms, might it be worthwhile to take something daily for the rest of my life? My annual physical comes up in April -- something to ponder until then.

The Princess and the Pea - Another Excerpt

Imagine this scenario, one that is familiar to most able-bodied people who live in parts of the country with changing seasons. It is late autumn, and we are blessed with a beautiful Indian summer weekend. It’s time to take advantage of the weather and finish up all the outdoor chores that need to be done before winter descends.

Lisa feels good. The sun is shining and low in the sky. The temperature is warm, but not overly so. The air is crisp and filled with the earthy fragrances of fall. Lisa sets off energetically on her mission. She rakes the leaves to the curb, removes all the screens from the windows, cleans the gutters, stacks the firewood, and brings in the lawn furniture.  She finishes up by taking Abby, her rambunctious Labrador retriever for a long walk in the park.

As Lisa sits down to dinner that evening, she feels pleasantly tired and fatigued. “I’ll sleep well tonight,” she thinks. As the evening progresses, Lisa finds herself getting a little achy. Muscle groups she didn’t know existed are beginning to murmur their distress. Her lower back is aching a little, and her shoulders feel tight. Comfortably ensconced in an easy chair, she is watching a movie, a fast-paced action thriller, and yet she starts to doze off in the middle of it.

Lisa finally gives up on the movie. Rising out of her easy chair, every muscle in her body screams, from her little toe to the top of her scalp. Lisa pops a couple of over-the-counter painkillers and heads to bed. A good night’s sleep, a slightly easier day tomorrow, and she’ll be feeling fine by Monday.

Lisa wakes up Sunday morning. A little fatigued, a little achy, but she’ll survive. She takes a couple more pain-killers and sets off for a brisk morning walk with Abby. When she returns, she’ll relax, read the paper, and maybe even take a nap. Life is good.

Mary’s story parallels that of Lisa’s, with one critical difference − Mary’s life is lived from the perspective of a fibromyalgia sufferer. Mary does not allow herself to be defined by her disease, and most of the time she functions normally. However, because she must be aware of those circumstances that trigger her symptoms, she is often frustrated by needing to limit her activities.

Mary also wants to take advantage of the beautiful weather. She feels good and full of energy. She might be feeling a little stiffness, but that’s normal for her condition. Because it’s such a great day, and she feels energetic, Mary performs all the same activities Lisa did. But in the back of her mind is always the niggling little worry, “Am I pushing myself too hard?”  Nevertheless, she goes ahead and accomplishes what she wants to do. The adrenaline that has kicked in keeps her going as she works steadily and productively.

Just as Lisa did, Mary sits down to dinner that evening feeling pleasantly fatigued. Okay, maybe a little more than fatigued – she’s really beat. But she accomplished so much today, she feels satisfied.

Meanwhile, her muscles have already begun to ache. Her elbows hurt and it is difficult to bend and unbend her arms. The spot between her shoulder blades burns, and pain and numbness radiate down her arms. Just lifting her arms to put the dishes away is an effort. It hurts to lift her arms above her shoulders. Her hips are aching and her legs have a heavy feeling.

Mary sits down to watch the same action thriller that Lisa had turned on. Like Lisa, Mary also has difficulty staying awake. Unlike Lisa though, Mary cannot seem to get comfortable. She tries curling up with a heating pad in a big comfortable easy chair, but she has to constantly shift her position as different parts of her body send out pain signals. First her lower back and then the back of her thighs are aching. She straightens her legs and rests them on an ottoman, but soon she has numbness, and an unpleasant tingling feeling radiates down her left leg. Curling to the right puts pressure on her right arm, causing it to tingle and go numb. Curling to the left provokes the same sensations on the left side of her body.

Despite the discomfort of her fibromyalgia, Mary has the good fortune to remain fairly mobile and agile. She can still climb in and out of a bath tub easily, many fibromites cannot. Finally giving up on the movie, she takes a long soak in a hot bath, which helps to ease the aching somewhat. Unfortunately, she will not sleep nearly as well as Lisa. Characteristic of fibromyalgia is sleep disruptions throughout the night. Mary never sleeps well. She also takes an over-the-counter painkiller and heads to bed.

Mary tosses and turns all night. If she rolls to the right, her right arm goes numb and the right hip pains her, roll to the left, the same. Lie flat on her back and her lower back hurts, and she could never sleep on her stomach. All night, Mary flops around like a fish out of water. She wakes up every time a new pain starts or a part of her body goes numb. She falls into a restless sleep by early morning.

Mary awakes at her usual time. She is exhausted, but she can’t sleep anymore. Her body aches all over and she is uncomfortable. Her brain feels foggy. She gets out of bed, and goes through her morning routine. Bathes and eats breakfast. By the time this is done, she is even more exhausted. She needs to close her eyes, just for a few minutes, she’ll feel better in a few minutes. Mary dozes fitfully for an hour, then gets up for a drink. Maybe some caffeine will help. It doesn’t. Mary aches from head to toe as if she has the flu. Even her skin hurts. Her brain is cloudy and reading the paper is difficult. She just can’t make sense of the words. Henry, her border collie, lies dejectedly by her side. No walk today.

Mary has entered what fibromites call a flare. By over-exerting the day before, she triggered a flare-up of her fibromyalgia symptoms and trouble spots. Mary won’t be right as rain tomorrow. It could take days or even weeks of rest − depending on the extent of her fibromyalgia and other contributing factors − to return to a level of normalcy again.

This is the difference between someone with fibromyalgia and someone without. Those without fibromyalgia do experience pain and fatigue from their over-exertion. Those without fibromyalgia do not have daily chronic pain, fatigue, and many of the other symptoms associated with fibromyalgia. They will be right as rain by Monday, if not Monday, at least by Tuesday. They won’t miss work or be confined to the house or bed. They won’t become socially isolated, because they are just too tired to go out, and tired of trying to explain why.

3/10/2011

I am so tired this evening. The fatigue that had been creeping up on me all week stopped me dead in my tracks. I'd wake up sluggishly each morning, repeatedly hitting the snooze, but I had so much to do -- appointments, my books, taxes.

I blamed the muscle relaxer for the morning sluggishness. That can be a side affect, but I didn't really believe it. I've often taken this prescription at bedtime and not been groggy at all the next morning. I never take anything stronger than acetiminophen during the day, and I hadn't taken any in quite a few days.

But after a morning meeting, followed by errands, I returned home. There was a break in the rain, so I headed back out to walk the dogs. It was still dry when I got home, so I refilled my wood rack in the mud room. "Better beat the deluge," I thought.

I fed all the pets, and then I sat down to a nice salad and some homemade bread. That's when I slammed into the wall. I was so exhausted, I wanted to head straight to bed, but I have rules. No napping in the early evening. So I took care of some email, it was only 6:30.

I just wanted to sleep. My back ached between my shoulder blades. The pain radiated down my spine and spread out to my hips. Attached to my aching hips were two extremely heavy legs. The muscles were tight and and achy right down to my toes.

I did not go to bed at 6:30, but I didn't have the energy to do anything else I had planned for the evening, like my taxes. I'd never be able to make sense of the entries. I decided to watch a movie instead.

My hands are stiff and tight as I write this. It hurts to lean on my elbows. Sharp pain, like I'm resting them on small stones.

Maybe it's the weather. A rain system moved into the area with strong winds. Maybe it was the doughnut I couldn't resist at the morning meeting. I did try to make up for it with a really healthy salad this evening. Whatever the cause, I am not setting an alarm tonight. No appointments until later in the day. Hopefully, a good night's sleep will bring me back from the dead.