Just Listen

     I have a love-hate relationship with doctors.  It took thousands of dollars, several doctors, years of my life, and an experimental new program to finally find some semblance of my former life before Fibromyalgia.  Before I found the doctor and program that helped, no one listened to me.  They would pat me on the head and tell me I was fine, even though I knew there really was something wrong with me.

       One doctor kept increasing my medication even though he didn't know what was wrong.  I started having seizures and was out of work for several weeks.  My doctor didn't know what to do so he sent me to a neurologist.  The neurologist wrote in my medical file that I was faking it and there was nothing wrong with me.  The second time I went to see her, she had the nurse practitioner see me.  The nurse looked at me and immediately knew the seizures were because I was being overdosed on the medication.  As soon as I stopped taking the medicine, I was able to return to work.  
     This was when I decided to go to a new treatment center for Fibromyalgia.  The insurance considered it to be "experimental," so they wouldn't pay for it.  I put several thousand dollars on my credit card and decided to take a chance.  My new doctor had the same illness I did and spoke to me from a place of understanding.  He set aside an hour to talk to me and listened to what I had to say.  I will never forget how it felt to have someone truly listen and understand me.
     This lesson has stayed with me.  So many times people come to us from a place of fear, or hurt, or confusion and we make judgements or try to fix it.  Sometimes we are right, but often we are very wrong.  When we listen, we make a difference that goes further than the time we spend.

A face of Fibromyalgia

Change Your Thinking

“If you can’t change your fate, change your attitude.” – Ralph Waldo Emerson  

     When I was diagnosed with Fibromyalgia, the rheumatologist came in and said, "I have good news and bad news.  The good news is it won't kill you and the bad news is it will never go away and there is nothing I can do for you."  I was on a leave of absence from work, barely able to move, and feeling sorry for myself.  One night I realized that he was right.  There was nothing I could do to make it go away and all this energy feeling sorry for myself was making my body feel worse.  I started to think about the positive side - it wouldn't kill me.  Well, that's not such a bad diagnosis when you think about it like that.  There are plenty of worse things I could have.  Once I started thinking about that little glimmer of positive energy, I began to feel a little better.   

     It's okay to rage and cry and mourn the loss.  But when it's over, focusing on the "can'ts" doesn't change them, it only makes me feel miserable. Positive thinking won't make me better, but it makes me feel better.  Accepting the "can'ts" doesn't mean I like it or it's okay, it just lets me focus on all the "cans" in my life.  It's all good because life works out the way it's supposed to be.  None of us gets out alive, so we may as well enjoy the journey.

Stages of Grief

     I knew you went through the stages of grief when someone died, but I never realized that you go through the same stages when you have a chronic illness like Fibromyalgia or Chronic Fatigue Syndrome.
     The first stage is denial.  I dove into this stage.  To prove I wasn't sick, I did twice as much work as I had been doing.  I had major flare-ups during this stage because I refused to accept what my body was telling me.  This led easily into the second step - anger.
     When I realized I couldn't just ignore it, I got angry.  I blamed my doctors for not being smart enough or caring enough to help me.  If my doctor told me one more time I would be cured if I would just exercise and lose weight, I would curse him with this disease.  I blamed my family and friends for not understanding what I was going through when they said things like, "I get tired, too."  I got angry at God for making me sick.  Mostly I raged at myself for not being able to fix it.  For the first time in my life I couldn't will myself to overcome an obstacle, and I felt like a failure.
     When anger didn't work, I began bargaining with God.  When that didn't work I bargained with my family and friends.  What if I stay home and rest tomorrow, then can I go to the party Friday?  When they didn't have the power to fix it, I turned to bargaining with myself.  The problem was I never kept my part of the bargains.  I would end up back in denial, pushing myself too hard, and then angry when it didn't work.
     After spiraling through the first three stages several times, I got depressed.  Why should I even go on living if I was going to live with excruciating pain, unable to dress myself or hold my baby?  I spent a lot of time in this stage and those dark days were a pain all its own.  My doctor thought I was in pain because I was depressed.  I knew I was depressed because of the physical and emotional pain of the Fibromyalgia and CFS.  I wish I could tell you how I made it through those days, but they are a blur of blackness when I try to remember them now.
     The last step is acceptance.  I reached this stage by starting this blog and reaching out to others in pain.  I read everything I could on the subject and began taking better care of myself.  I stopped thinking of Fibromyalgia as the main part of my identity and began seeing me as Tiff again, with a new aspect to my life.
     I wish I could say that once you reach acceptance you are done, but that's not the case.  I still spiral through the stages every time something new comes up in my life.  Monday is a memorial hike for someone I loved.  I really wanted to go and immediately went into denial that there were any reasons I couldn't go.  Then I began bargaining.  What if I am careful?  What if I promise not to overdo it?  What if...
When I found out it would be an all-day eight mile hike up a rough terrain, I knew there was no way I could go.  I was so angry at myself for not being able to do something that was so easy for everyone else.  Then I got depressed that I wouldn't be able to honor his memory in such a spiritual way.  I'm still in this stage today, but I hope to move into acceptance soon.  My daughter and I plan to choose a flower that represents him and plant it in our garden so I will have a special place to go instead of the hike.
     After dealing with Fibromyalgia and Chronic Fatigue for the past ten years, the steps are just as painful, but they are easier to go through and I go through them more quickly than I did originally.  I hope you are able to find acceptance in your life, but I'm here for you while you go through the other stages.

Exercise and Flare-ups

     My doctor is convinced if I lose weight and exercise, the Fibromyalgia and Chronic Fatigue will be cured.  I go between rage and hope he is right.  His comments embarrass me and make me feel like a failure.
      Eleven years ago I was fifty pounds lighter with two small children and enough energy to work full time and get my masters degree at night.  Soon after my son was born, I noticed my body wasn't recovering the way it had before.  I didn't have any energy for my baby or young daughter. Simple tasks like taking a shower or getting dressed left me crying on the floor.
     Then the pain started.  Things that were not painful before became excruciating.  Hugs from my baby made me feel like I had been tackled by a football player. The gentlest touch sent waves of pain through my body.  Even wearing clothes or having a sheet touch my skin at night was horrible.
     My doctor diagnosed me with depression.  I kept telling him I was depressed because I was sick, not sick because I was depressed.  He gave me anti-depressants and sent me home.  With the medicine, I gained thirty pounds in weeks.  I tried to exercise, but then I couldn't walk.  The steroid shots helped me walk again, but added twenty more pounds. 
     Most days, most people can't tell I am sick.  Huge amounts of medication keep me functioning, but my weight is still a big issue for my self-esteem.  I haven't had a flare up for months, so I forgot how horrible they are.  This week I convinced myself to start jogging.  I jogged four times and lost two pounds.  I also brought on the worst flare-up I have had in years.  My friend says, "If exercise cures your chronic fatigue, you never really had it in the first place."
     It is a hard balance to find.  Do I listen to people who have these illnesses, too, and know what I am talking about? Do I listen to doctors who think it is all in my head?  Do I exercise to get healthy and spend the rest of the day in bed or do I save my energy for the rest of my life?  I'm still trying to find that balance in my life.  Funny that finding balance is my resolution this year.  Luckily it's only January. 

Gifts for Fibromyalgia Sufferers

     Happy holidays!  If you are looking for the perfect gift for a loved one with fibromyalgia or chronic fatigue syndrome, you have come to the right place.  Although your loved one will enjoy any gift because it is from you, there are some gifts that are better than others.

Warmth
     People with Fibromyalgia often have trouble controlling their body temperature.  In the winter, most people get cold and warm back up when they come inside.  When we get cold, we stay cold for hours.  Because of this, we love anything that helps us warm up or stay warm in the first place. 

• Warm socks help us stay warm during the day or at the beginning of the night in a cool bed. 
• Our hands ache all day once they get cold for a few minutes, so warm gloves or hand warmers are always nice. 
• Scarves or hats help protect us when we have to go outside. 
• Giving your friend a warm sweater or a shirt that can be layered is a nice gift. 
• We love pajamas or slippers that we can relax in once we get home. 
• It is wonderful to get a space heater for work when you can't change the thermostat. 
• It is also nice to have a thermos of warm soup or hot chocolate for lunch. 
• We also love throw blankets because we get cold, but everyone else is fine.

Water
     Warm baths help ease our aching muscles and help us warm up.  We love bath time, so any presents to make that time of the day even better are wonderful. 

• Try a big fluffy towel or a soft robe. 
• Some people like scented candles, bubble baths, and bath salts.  A lot of people with Fibromyalgia have chemical sensitivities and get sick with chemicals that smell.  Check with the person you are buying for or get the unscented variety. 
• A cd of soft music is always nice.

Pain
     Anything that can ease our pain is appreciated. 

• We love herbal packs that can be heated in the microwave or frozen as ice packs. 
• Aspercreme is nice.  It works well and doesn't have the smell or burning sensation of other topical treatments. 
• We have found that music helps ease our pain, so a CD, I-Tunes card, I-Pod, stereo, etc. is always a fabulous gift.  On our worst days, we listen to music for hours.   

Entertainment
     Winter is a difficult time of year for us, so we have to spend a lot of time in bed or on the couch.  Anything that can help make this time more enjoyable is a wonderful gift. 

• Try a movie that your friend will enjoy.  We love comedies because we don't get to laugh as much as we used to. 
• Puzzle books are great ideas if your friend doesn't suffer from brain fog. 
• Books are always nice.  If your friend has trouble concentrating, audio books are a way to enjoy the book without the cognitive struggle of reading. 
• Materials for a hobby are always wonderful gifts, as well.

Time and Help
     Since winter is a rough time for us, a gift offering your time or help will be appreciated. 

• You can offer to shovel snow or drive them somewhere they need to go. 
• If your friend struggles with the shopping or laundry or cooking, offer to do it for them for a day. 
• Go over and help them clean their house or decorate for the holidays. 
• If your friend can't go out, offer to come over and visit for awhile.

Chronic Fatigue Syndrome

Many of us fibromites also suffer from other debilitating problems: migraines, irritable bowel and bladder syndrome, joint swelling, dry mouth, restless leg syndrome, dizziness, PMS, depression, panic attacks, scoliosis… the list goes on and on. My mom and I both suffer from other diseases besides FM, but in this entry I want to focus on Chronic Fatigue Syndrome and the misunderstandings that go with it. I don’t claim to be an expert, but this has been my experience.

CFS is another one of those invisible diseases that is diagnosed by examining the symptoms and ruling out any other possible causes. The problem is, the array of symptoms can be caused by many other things, such as sleep apnea, and all of them are difficult to treat. The irony of this illness, especially put together with FM, is overwhelming: chronic pain interferes with sleep patterns, and a lack of sleep lowers the body’s pain threshold. Weight gain, a side effect of many fibromyalgia medications, can worsen this cycle. So can depression and anxiety. Restless leg syndrome can also keep you awake all night, and, of course, there’s just plain insomnia to prevent you from sleeping no matter how exhausted you may be.

It’s not easy being a teen (gotta love those puns) with this disease. “Getting tired” is a common complaint in high school; teenagers’ internal clocks are set to stay up until 3 AM, while the real-world clocks are set to wake up at 6. Chronic Fatigue is not quite the same thing, though. I often go to bed at eight o’clock, long before most of my friends are even home, just so I can manage to get up the next morning. The exhaustion is debilitating enough that it keeps me from going to school. Parties and get-togethers take a whole day of planning, and I have to make up excuses to leave early or avoid sleeping over because it’s too hard to be away from my bed that long.

The cognitive impairment is like fibro fog times ten. When I have fibro fog, I stumble over my words, say things backwards, forget where we parked or what my phone number is. When I’m suffering from “fatigue,” I can’t speak at all. I see your lips moving, but I have absolutely no idea what you are saying – and even if I did I couldn’t answer you. People often mistake my blank stare for apathy or even anger, but it’s nothing like that! I want to know what you have to say, but I just can’t understand you. Sometimes, when it’s really bad, I can’t even hear you. And when I start crying it isn’t because of anything you did or didn’t do, it is because I’m frustrated. I’m frustrated at myself and my body because I care about you, I care what you’re telling me and I want to understand, and yet it seems like you’re speaking some totally alien language. Every time I start to grasp the meaning of the words they slip away.

I have heard it said that people suffering from this “fatigue” aren’t capable of completing a thought, but that isn’t true in my case. In fact, I can’t stop thinking; just because I’m unable to communicate any of those thought doesn’t mean they’re not there. I can write entire stories in my head, and I will even write music or practice my scales, picturing how to play a song on the piano, sometimes pretending to sing or fly. It’s almost like “zoning out,” but for hours at a time – my own built in coping mechanism.

There are many people who have a hard time understanding this disease; as I write this, I think of my friends. They know I have fibro and CFS, but it’s hard for them to comprehend what that means. They don’t understand why I never want to sleep over, or that when I joke about shaking because of the Pepsi I had with lunch, what I really mean is that I need to go sit down before I pass out. They don’t understand that it takes a while for me to react to what they say because I’m still processing the words, not because I’m faking the emotion. They are loving and supportive, and it’s not their fault they don’t get it. “Pain everywhere” is pretty self explanatory. “Always tired” is a little more misleading.

For more information,

http://fmcfsme.com/article_cfs10thingspeoplemisunderstand.php

is a wonderful article on what it really means to have CFS. It’s very useful both for those with and without the disease, and the first time reading it was when I finally realized that not only am I not crazy, I’m not alone, either.

The Copycat

     I never tried to get out of gym by saying I was sick.  If I had, I would hope to be as creative as a girl who said she had an Fibromyalgic knee the doctor found on an x-ray.  She must not know that x-rays do not pick up Fibromyalgia and it doesn't affect one location, but I love her creativity. 
     The ads on t.v. for Fibromyalgia are both a blessing and a curse.  Until the ads began, no one had heard of my disease.  Now when people discover I have it, they have a reference to start talking to me.  The ads also give a voice for an invisible disease, which is good since brain fog, pain, and fatigue, don't make us very good public speakers.  The ads also help drive companies to research and develop new medications that help make our lives a bit better.
     Unfortunately, these ads are also a curse for us.  All of the women on the ads are older.  I am not an older woman and they don't even begin to resemble my teenage daughter or the men I know that suffer from this disease.  The women on the ads talk about fatigue, but only in regards to the hobbies they can't do - such as painting or walking through Paris.  We barely manage to do our day to day tasks and our pain curls us up moaning on the floor.  The ads also convince people they know about the disease because they watched a thirty-second advertisement.  This leads to misunderstandings about what the disease really is and how it affects us each day - such as the copycat girl avoiding gym.
     I do love the fact that we have gained enough prominence to be the disease of choice for a girl trying to get out of gym.  It seems Fibromites have finally arrived!  

Best Left Unsaid

Words are amazing things.  They have the power to heal and the power to cause permanent scars.  Sometimes we are at a loss for words, so we say the wrong thing at the wrong time.  Sometimes we are careless and say things without thinking about their impact.  If you know or love someone with fibromyalgia, these are things best left unsaid when you are trying to be supportive.

"I know how you feel." 

You may say this in the most supportive way, but this statement is best left unsaid unless you actually have fibromyalgia.  When we are not feeling well, we often get angry at people who claim to know how we feel.  We may strike out at you and yell, "No!  You DON'T know how I feel!"  (This is also true during childbirth, but that is a different story.)

"I know how you feel...I have..." 

This is even worse than the first statement.  Not only do you not know how we feel, you have suddenly turned the conversation to focus on you.  We love you and want to support you, but if we actually admitted we aren't feeling well (which we rarely do), focus on what we are saying.  After we have a chance to express our feelings, we promise we will focus on your situation.

"You don't look sick..."

Fibromyalgia is a chronic illness that varies from day to day and moment to moment.  It changes the way our brains process pain and amplifies pain signals from our nerves.  It affects our central nervous systems and affects our entire bodies.  You can't see it on the outside, but we are sick.  You wouldn't go up to someone with cancer and say, "You don't look sick."  A fellow fibromite replies, "Yeah? Well, you don't look stupid." 

"You look as bad as I feel."

When we aren't feeling well, it doesn't help to tell us that we also look awful.  Always the optimists, we may say, "Thanks, I'm glad you are feeling great today!"

"I get tired, too."

People with Fibromyalgia don't just get tired.  We know what tired feels like.  Fibromyalgia causes you to feel bone tired.  Your body is so heavy, you can't lift your head off the pillow.  Some days we can't even shower and dress ourselves without collapsing on the bed crying because that took all of our energy.  We can handle tired.  Picture Superman and Kryptonite.  That is our definition of tired.

"I read about this doctor (medicine, herb, exercise) ..."

We have doctors, sometimes many different kinds of doctors, taking care of us.  While we appreciate your love and support, we are often in so much pain we will try anything.  There are many people who are more than willing to promise us a miracle for the right price.  Most of us have tried just about everything.  And remember, just because it is natural or an herb doesn't mean that it is harmless.  Some of them interact with our medications and cause serious side effects.  We may smile politely and act interested, but this is another thing that is best left unsaid.  (Unless you are a doctor).

"You know, if you would only exercise more (lose weight, eat better, think positively)..."

When it takes everything you have to go to work or school day after day, it is hard to take care of yourself.  We know exercise and losing weight will make us feel better, but we also know that exercising today will probably make us crash for three or four more days.  When we need the little bit of energy we have to meet our daily obligations, we can't risk crashing for the rest of the week.  Many of the medications that give us energy and take the edge off the pain also cause weight gain.  We know you care about us and want us to feel better, but this comment won't motivate us.  It will only hurt our feelings and make us feel misunderstood.  This one is also best left unsaid.