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.