Friday, April 22, 2011


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.

Wednesday, April 20, 2011


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.”

Monday, April 18, 2011


"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.

Friday, April 15, 2011


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.

Wednesday, April 13, 2011

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.

Monday, April 11, 2011

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.”

Wednesday, April 6, 2011

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.

Monday, April 4, 2011

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.”

Saturday, April 2, 2011

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.