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

5 Things NOT to Say

1.  "I get tired, too..." Fibromyalgia is more than just being tired.  It messes up your body's ability to go into deep sleep,  so even if you sleep more than eight hours, you feel like you didn't sleep.  This is the kind of tired that you get when you get the flu and you have no idea what people are saying to you because you are so tired.  

2.  "My muscles and joints hurt too, but I still..."  Fibromyalgia pain is more than just being sore.  Since your body has a hard time going into deep sleep, it has a hard time recovering and repairing the minor injuries of the day.  This pain is like when you have the flu and feel like you have been run over by a truck because every part of your body hurts.  Only it never goes away. 

3.  "If you would just ..."  My mom should be the only person that can start a sentence like this.  Exercise and eating healthy are definitely great strategies to improve health, but it is a little more complicated than it is for other people.  Fibromyalgia makes your body react funny to exercise.  Most people can exercise and recover within a day or two to exercise again.  It takes a lot longer for people with Fibromyalgia.  It is a difficult balance to have healthy exercise without having a flare up.

4.  "I forget things, too..."  Fibro fog is like trying to remember to do things in a dream.  The most ordinary tasks and information seem suddenly impossible to grasp.  I often have to write down my own phone number or address when calling someone who needs the information because I know it will be hard to recall it on the phone.  Fibro fog makes you lose words as you talk, forget things like your birthday or phone number, or names of people you have known for years...it is more than just forgetting things sometimes.  

5.  "You should try ..." This is usually followed by the newest idea or get rick quick scheme for curing Fibromyalgia.  I appreciate your help, but my doctor and I have a medical plan.  I have tried most things and lost money and time.  Some of them even made me more sick.  It would be nice to have a cure, but we aren't there yet.

The Invisible Illness

     Fibromyalgia is an invisible illness.  I look normal on the outside so most people don't even know I have it.  This is both a blessing and a challenge.  It is a blessing because I can be me and not have everyone focusing on my illness.  It's also a blessing because I am vain enough to want to look "okay" when people see me.
     It is a challenge because I look normal so people expect me to be able to do everything a healthy person can do.  They don't understand that taking on a few extra things at work will make me spend the weekend in bed recuperating or that going to work today was all I could physically manage and I can't go out after work for the "fun" stuff.  The only thing they see is that sometimes I look "tired."
     It is also a challenge for me because I am a perfectionist, an over-achiever, and a people-pleaser.  I do not want people to think that I use my illness to get out of doing work, so I work extra hard to make sure no one will feel that way, even if that makes me have a flare up.
     Sometimes people react funny when they find out I have Fibromyalgia.  Some people think it is a fake illness and I am just trying to get attention - one doctor even put that in my medical file for me.  That made me feel awesome!  Others think it is a mental illness and that it's all in my head.  Some people know a little bit about it and think they know what it is, so they say things like, "Oh, so you get tired? I get tired too," and then the conversation revolves back around them.  Other people know exactly how to "fix" me and offer all kinds of free medical advice.  All of it is funny on my good days and makes me feel worse on my bad days.
     It's hard living with an invisible illness.

Happy Mother's Fibro Awareness Day

     Today is Fibromyalgia Awareness Day.  It is also Mother's Day.  It's funny that these two days are together this year because my Fibro has been a part of my kids' lives for as long as they can remember.        
     Tonight I watched a mother running with a camera in her hand to capture each one of the kids' moments as they ran and played in the gardens.  Then she picked up one child, spun him in circles, lifted him up on her shoulders and ran with him up the hill.  It was a beautiful moment that I never experienced with my kids.
     I was diagnosed with Fibromyalgia twelve years ago when my son was 2 and my daughter was 6.  It was a difficult time for them.  I was in constant pain and nothing helped.  My feet often felt like they were on fire and walking was very difficult.  Any kind of physical exertion left me curled up in bed for days.  I wasn't sure if I could keep working and being the breadwinner made that thought unbearable.  My kids didn't have much of a mom in those dark years.  Thoughts of ending it all were always near.  While driving in the car I would think about opening the door and ending the pain.  I was depressed but it was only a symptom of being in so much physical pain that I couldn't take any more.
     My children saved me.  I guess they misunderstood something the doctor said.  My son said, "Mom, when you die, do you want me to kill myself so you won't be lonely?"  That day changed my life.
     I heard about a clinic that was new and signed up to hear about their program.  I impulsively paid $500 down payment on my credit card and crossed my fingers it wouldn't be denied.  I began working two jobs to pay for the treatments that the insurance wouldn't pay because it was "experimental."  I also started educating myself and read anything and everything about Fibromyalgia.  If I was going to keep living, I was going to have to find a way to change what I had been doing.
     I still live with pain every day and some days breathing is the most I can do, but I am still here.  I AM STILL HERE and that is a celebration in itself because I am a mom to two kids that have saved my life numerous times.
     

Fibro Fog and Phone Numbers Don't Mix

     I had Fibro Fog so bad today I had to just stop and laugh. I left a voice mail to tell someone she got the job and couldn't remember my cell phone number, so I made it up. Then to cover that, I called back and left a voice mail saying I would give her the school number and cell phone. I ended up reading her own phone number as my school's number. I had to call back a third time to say, "I hope you think this is funny, but it's Friday and it's been a long week, and here's my real school number."  

50 Things You Can Do Today to Manage Fibromyalgia

 If you suffer from Fibromyalgia, or know someone who does, this book offers 50 things that may bring you relief.  This book is especially helpful if you are newly diagnosed.  If you have been living with this disease for a while, like I have, it serves as a good reminder of things that help.  

     The book starts with a chapter about Fibromyalgia.  The remaining chapters focus on different aspects of the illness and how to help manage these areas of your life.  It looks at pacing yourself, stress reduction, sleep, diet, and exercise.  It also goes over medications that help and homeopathic treatments that have helped some people.

     This is a quick book that can be read as an overview and then as a reference book when you have a specific question or face a flare-up.  

An Angel Disguised as a Nurse

I met an angel disguised as a nurse today.  My daughter has been very sick for several years with Fibromyalgia.  She has had to drop out of school twice because she has been so sick.  There is one juvenile specialist in my state.  She has a waiting list that ranges from months to years.  Last year when my daughter had to drop out of school for a second time, I called but didn't have the right kind of insurance.  I asked if I could pay it myself and was told it would cost $1,000 a visit.  I was devastated.  There was no way I could pay that, even with the extra jobs I work. 
     She dropped out of school and I prayed that she could make it until the fall when I could switch insurance.  I called in September and was put on a waiting list. 
     Mandy has been very sick the past few weeks and was worried that she would have to drop out of school for a third time.  I called again yesterday and the nurse told me that she would see what she could do. 
     Last night Mandy got up in the middle of the night and passed out cold on the bathroom floor.  After getting her to bed, I stayed up all night to make sure she wouldn't get up and fall again. 
     Today, during class, my phone rang in my classroom.  It is not supposed to ring through during class.  Somehow, the nurse managed to get through to tell me that someone had cancelled an appointment two weeks from now, and if I could get the paperwork, she would save the spot for me.  I couldn't thank the woman enough.  She was an amazing angel in my life. 

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.

The Crash

     Wow - this is a hard thing for me to actually do, even though I know better.  I know if I overdo it today, I will crash for the next few days, but I "forget."  I get sick of being sick.  I hate turning down fun activities because something that is "no big deal" for everyone else took all my energy for the next few days.  It's embarrassing and frustrating and discouraging.
     On the days when I feel good, I am thrilled to feel even a smidgen of the way I used to feel.  I know it won't last, so I try to do everything I can in the few hours I have.  I know I will crash later, but in the moment, I don't care.  I want my life back.  I want to dance and garden and play and shop and visit with people.  I will deal with the crash later.
     Of course, the crash is horrible!  Pain everywhere - even elbows.  Muscles that refuse to move, even when that means crawling up the stairs or not being able to shampoo your hair.  
     My daughter is going to go back to school this fall.  I've been talking to her about ways to pace herself so she doesn't crash as often.  Obviously I need to take my own advice.  Anyone have any great suggestions for us to avoid the crash?  

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.

Fibro and Fatigue Center

     Seven years ago, my life caved in on me.  Little things like taking a shower and getting dressed left me crying with exhaustion.  Every part of my body ached.  Unable to quit working, I stopped doing everything else, even the things I loved.  I bounced from doctor to doctor with no luck.  In the meantime, my life became very small.  I stopped reading because the words didn't make sense.  Even watching TV took more attention than I had.  I crawled home from work, curled up in a ball with the covers over my head and slept.  I even slept through birthday parties and family gatherings.
     One day I heard about a new clinic for pain and fatigue, and made an appointment to hear their advertising claims.  My insurance declared it "experimental" and denied payments, but for some strange reason, I handed over my credit card for the first few hundred dollars.  I couldn't afford it and worried I was being scammed, but something told me to do it.  That moment made all the difference.  Through their experimental care, I finally got some semblance of my life back.  Their  link is http://www.fibroandfatigue.com/ 

My Brain is Asleep

     Sleep is a huge issue when you have Fibromyalgia or Chronic Fatigue Syndrome.  Not only is it hard to fall asleep, your brain never goes into Level 4 sleep - Deep Sleep.  This is the stage where your body heals itself from the minor traumas of the day both physically and mentally. Muscles grow and your body stays healthy by renewing itself.  It's what lets you wake up refreshed from a good night's sleep.  When you have Fibro and/or CFS, your brain dreams, but instead of moving into a deeper level of sleep, it resurfaces to a light sleep and you wake up.  Now repeat the process several times a night, day after day and you will understand why sleep is a huge issue for us.  It is so huge, it is one of the symptoms used to diagnose the diseases.  Many researchers believe suffering from sleep deprivation for so long even causes the diseases. 
     There is new research conducted on rats that found sleep deprivation caused parts of the rats' brains to act like they were asleep.  I feel like this every day with Brain Fog.  I say the wrong words, but don't know what I said.  I call people the wrong names, even though I know who they are.  If you ask me directions, I will not be able to tell you which way to turn because I can't figure out right and left.  I will look at you blankly while you are talking to me because I can't figure out what you are saying to me.  I hear the words, but my brain can't connect them with any meaning.  Don't bother asking me my phone number or address. The numbers will get jumbled in my head and I will inevitably give you the wrong ones in the wrong order. Forget calling me on the phone.  Without any visual cues, the Brain Fog gets overwhelming and panic attacks begin to set in.  It's enough to make me feel crazy and definitely enough for everyone else to think I am stupid.  I don't know if it's better to say, "Sorry, that part of my brain is currently asleep; try back later," or just attribute it to Brain Fog.  I do know that the analogy of having parts of my brain fall asleep makes sense to me and makes the Brain Fog seem less scary and overwhelming.  After all, my brain may be asleep for a few minutes or hours, but I always wake up again.  It isn't permanent.  What do you think?            

Hard Lesson

     Okay, so those of you that know me in real life know I am very stubborn and I don't like to be told what to do.  I learned the hard way this week that those characteristics don't serve me very well.  I read a chiropractor's theory Fibromyalgia is caused by problems in the neck and spine that limit the blood flow and disrupt the nerve endings.  This is why they struggle with balance, walking, and falling.
     To help assess his patients, he has them put their heads back and look towards the ceiling for 30 seconds.  After doing that, most of his patients have severe trouble.  They get severe headaches, pain, and flare ups. 
      Because of some physical trauma I suffered as a child, the vertebrates in my neck are backward.  After reading this article, I said to myself, "I don't think that's right.  I know my neck is messed up and I can look up for 30 seconds."  Then I looked up at the ceiling and counted to thirty.  It was hard for me, but I did it.  (If you don't have Fibro, the fact that it's hard to look up for 30 seconds sounds ridiculous, doesn't it?) 
     For the rest of the day I had pain in my neck that continued to get worse.  Then the migraine hit me.  I spent the last half of the day in bed.  It got so bad, I got sick.  I have never had a headache that made me get sick.  Since I got sick on my pain medicine, I spent the entire night in pain.  The pain moved to my jaw and teeth.  The next day I had pain in the back of my head, my neck, and down my legs. 
      It might have been a strange coincidence, but I think the next time a doctor says something like that, I won't try to prove him or her wrong.  I guess I get so used to fake claims and quick fixes that I have become rather jaded.
     Today I was reading some other research from the National Fibromyalgia Association and came across a name that sounded intriguing called Fibro Innovations.  After visiting the site, I realized this was the website of the doctor I read about last week, even though I hadn't been to this website before or known the name of the group the doctor was working with.
     After looking at the website and realizing this was the same doctor, I have a headache, my neck hurts and my teeth feel too big for my mouth.  Apparently my body has a long memory and doesn't like this doctor. 
     Interesting thoughts to ponder about being sick and the emotional ties attached to physical pain.   

This is the link to his site if you are interested in his theory or his treatment plan

http://www.fibroinnovations.org/index.htmlhttp://www.fibroinnovations.org/index.html

Are We Wimps?

     My doctor thinks I am a wimp.  I didn't used to bruise when the nurse took my pulse, and I didn't feel like screaming when she took my blood pressure.  It's true things that don't hurt other people make me feel excruciating pain, but I am anything but a wimp. 
     One of the major symptoms of Fibromyalgia is pain.  It is a strange pain that changes, moves, and has no connection to a cause that we can pinpoint. 
     We have a low pain threshold, so our nerves register benign sensations as pain.  Other people register the nurse taking their pulse as pressure.  My nerves register it as pain.  Other people register a sensation and are able to forget about it. When you put on your watch, you feel the sensation of weight against your skin, but you soon forget about it.  My nerves don't forget about it.  In fact, as the minutes go by, the sensation turns to pain.  The pain continues growing until I can't stand it anymore and rip it off my wrist in disgust.  Our nerves register heat, sound, light, pressure, and touch as pain.  It is a physical response our nerve endings send to our brains.  It is not an emotional response. 
     Although we have a low pain theshold and register so many things as pain, we have a high pain tolerance.  We are able to deal with pain that is unimaginable to most people.  On a good day my feet feel like they are on fire, I can barely walk, have a headache, my leg muscles are in spasms, and my eye keeps twitching.  You would never know it because I have learned to deal with the pain.  Although my body is registering everything as pain, I am able to work two jobs, raise a family, and do it all with a positve attitude and a smile.  The fact that people can look at me and say, "You don't look sick," shows what a high pain tolerance I have.     
     Maybe what my doctor meant to say is , "You're not a wimp.  Your nerve endings are a bit confused and think everything is painful.  They are the wimpy ones, not you."  That would make sense because sometimes he gets on my nerves. 

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!  

My Daughter

     I have a beautiful daughter.  She has a smile that lights up the room and green eyes that remind me of the ocean.  Mandy is even more beautiful inside.  She radiates love and goodness to everyone around her, so you feel happy just sitting near her.  She is a warrior who fights all inequities and wrongs she finds in the world.  She is gifted and her mind awes me with the ability to see in ways I can't even imagine.
     My daughter also suffers from juvenile Fibromyalgia.  This disease struck fast and hard.  She fights to do things that other people do with no thought at all.  They can get up from a chair to go to their next class.  Often, Mandy can't because her legs have stopped working.  While other kids are dancing, playing, or doing sports, Mandy's hands have frozen up and she can't get them to write anymore so she can do her homework. 
     Mandy was going to school online, but wanted to go back to a regular school because she missed her friends. She is so loving and sweet, she makes friends easily.  However, as soon as they ask her to come over and play or go to a party or go out on a group date, she is an outsider.  She can't count on her body to do what she needs it to do and is afraid of it happening to her in a strange place.  She uses all of her energy trying to go to school each day and has nothing left once she gets home.  She can't make plans with her friends because she never knows how she will feel that day.  This is hard for a fifteen-year-old to deal with.     
    



  

Invisible Disease

     It is amazing how much of our identity comes from what we accomplish and what we "do," not who we "are."  The first thing people ask when we meet is, "What do you do?"  The perception is that our job is who we are.  This is very frustrating for people who are out of work or on disability.  It makes us feel like our identity has been lost.  We are no longer doers, even though we still have value as people.
     Fibromyalgia and chronic fatigue are invisible diseases.  You can't tell from looking at us that we are sick.  When we look fine, people tend to think we must be fine, even when we are not.  This leads to the idea that we are lazy, even though many studies show that our drive to perform and "do" may have contributed to our disease.  Some people, including doctors, look at our healthy appearance and call us liars.  I would not have spent thousands of dollars searching for an end to this pain if I was a liar.  I wouldn't have contemplated suicide as a way to stop the agony because I wanted you to believe I was telling the truth.
     Many of us are forced to drop out of school or go on disability because of the pain and fatigue.  This is heartbreaking because we feel like failures.  We are no longer doers, so we are nothing in your eyes.  We have failed you and ourselves.  We mourn the loss of our identity.  Strong emotions cause physical pain for us and this makes life even more unbearable for us and for you.  Statistically, 75% of people with chronic illnesses get divorced.  We also have a higher rate of suicide.  Why would we lie to get this kind of attention? 
     Many, like me, are able to work long hours at their jobs.  However, that is all we are able to do.  As the week progresses, I find myself getting weaker and the brain fog closing in.  By Thursday and Friday, I am lost in a fog of pain and fatigue.  It feels like I am asleep and have no idea what is going on around me.  I crash every weekend.  I crawl up in bed and sleep for hours on end.  I wake long enough to eat or do the few things I have to do and then crawl back in bed.  This is the only way I can manage to keep working each week.  I have to give up everything I enjoy, including socializing with family and friends because I don't know if that will be what makes me crash for three days.  I may not look sick, but this isn't the way I would choose to spend my life.
     Invisible diseases are no less real than visible ones and who we are is as important as what we do.