A "Letter To Normals"

One of the hardest things about having fibromyalgia (or any invisible illness), is getting people to understand that you truly are sick.  For some reason, if a person can't see "sickness" with their own eyes, they tend to have a hard time relating to you, and showing empathy and sympathy for you and your illness.  Now, I know that us Fibromites aren't looking for sympathy, but a little empathy from those we love in our lives, would be nice.  To know they understand how we feel, and what goes on in our heads. 

"Letter To Normals" is the copyright of Fibrohugs.com and was written by Ronald J. Waller.  Permission is granted to anyone to use this letter, as long as the copyright and author is fully visible.  Reading "Letter To  Normals" brought tears to my eyes, because I could so fully connect with what Mr. Waller was saying. 

"The Letter To Normals
Hello Family, Friends, and Anyone Wishing to Know Me,

Allow me to begin by thanking you for taking the time out of your day to spend some time with me and get to know me better. A person’s time is their most valuable asset and yours is appreciated.

I want to talk to you about Fibromyalgia (FM) and Chronic Myofascial Pain Syndrome (MPS). Many have never heard of these conditions and for those who have, many are misinformed. And because of this judgments are made that may not be correct… So I ask you to keep an open mind as I try to explain who I am and how FM/MPS has assaulted not only my life but those whom I love as well.

You see, I suffer from a disease that you cannot see; a disease that there is no cure for and that keeps the medical community baffled at how to treat and battle this demon, who’s attacks are relentless. My pain works silently, stealing my joy and replacing it with tears. On the outside we look alike you and I; you wont see my scars as you would a person who, say, had suffered a car accident. You wont see my pain in the way you would a person undergoing chemo for cancer; however, my pain is just as real and just as debilitating. And in many ways my pain may be more destructive because people can’t see it and do not understand....

Please don’t get angry at my seemingly lack of interest in doing things; I punish myself enough I assure you. My tears are shed many times when no one is around. My embarrassment is covered by a joke or laughter, but inside I want to die....

Most of my "friends" are gone; even members of my own family have abandoned me. I have been accused of "playing games" for another’s sympathy. I have been called unreliable because I am forced to cancel plans I made at the last minute because the burning and pain in my legs or arms is so intense I cannot put my clothes on and I am left in my tears as I miss out on yet another activity I used to love and once participated in with enthusiasm.

I feel like a child at times... Just the other day I put the sour cream I bought at the store in the pantry, on the shelf, instead of in the refrigerator; by the time I noticed it, it had spoiled. When I talk to people, many times I lose my train of thought in mid sentence or forget the simplest word needed to explain or describe something. Please try to understand how it feels to have another go behind me in my home to make sure the stove is off after I cook an occasional meal. Please try to understand how it feels to “lose” the laundry, only to find it in the stove instead of the dryer. As I try to maintain my dignity the Demon assaults me at every turn. Please try to understand….

Sleep, when I do get some, is restless and I wake often because of the pain the sheets have on my legs or because I twitch uncontrollably. I walk through many of my days in a daze with the Fibro-fog laughing at me as I stumble and grasp for clarity.

And just because I can do a thing one day, that doesn’t mean I will be able to do the same thing the next day or next week. I may be able to take that walk after dinner on a warm July evening; the next day or even the in the next hour I may not be able to walk to the fridge to get a cold drink because my muscles have begun to cramp and lock up or spasm uncontrollably. And there are those who say “but you did that yesterday!” “What is your problem today?” The hurt I experience at those words scars me so deeply that I have let my family down again; and still they don’t understand….

On a brighter side I want you to know that I still have my sense of humor. If you take the time to spend with me you will see that. I love to tell that joke to make another’s face light up and smile at my wit. I love my kids and grandbabies and shine when they give me my hugs or ask me to fix their favorite toy. I am fun to be with if you will spend the time with me on my own playing field; is this too much to ask? I love you and want nothing more than to be a part of your life. And I have found that I can be a strong friend in many ways. Do you have a dream? I am your friend, your supporter and many times I will be the one to do the research for your latest project; many times I will be your biggest fan and the world will know how proud I am at your accomplishments and how honored I am to have you in my life.

So you see, you and I are not that much different. I too have hopes, dreams, goals… and this demon…. Do you have an unseen demon that assaults you and no one else can see? Have you had to fight a fight that crushes you and brings you to your knees? I will be by your side, win or lose, I promise you that; I will be there in ways that I can. I will give all I can as I can, I promise you that. But I have to do this thing my way. Please understand that I am in such a fight myself and I know that I have little hope of a cure or effective treatments, at least right now. Please understand….

Thank you for spending your time with me today. I hope we can work through this thing, you and I. Please understand that I am just like you… Please understand…."

Copyright of www.fibrohugs.com Written by Ronald J. Waller

I may just print off copies of this, and give them to my closest friends and family members.  I don't know if that will help get it through to them or not, but I feel as if I need to keep trying.  I'm really not sure that anyone can ever truly understand, unless they have it themselves. 

Accommodations In The Workplace For Fibromyalgia

Fibromyalgia is hard on someone even if they don't work outside of the home.  For those who do work outside of the home, they may feel that managing their symptoms while in the workplace is impossible.  There are quite a few accommodations that can be made though, to help make your work environment easier to be at.  I found a list at WebMD.  I'm going to highlight some important ones in this post, but you can see the full list by clicking the link.

The first thing you should do, is talk to your employer and describe what having fibromyalgia is like for you.  Explain to your boss how you will have good days, and you will have bad days.  See if there's any way that if you're having a bad day, that you can either take some work home with you to reduce your day in the office, or if it's possible for you to work from home that day.  Explain that even being able to take short breaks, alternating between sitting and standing, would be helpful to you.

What to do when Fibro Fog set's in?  Explain what fibro fog is.  Explain that it's a symptom of your fibromyalgia.  Ask that clear, simple directions be written down for you to refer to.  Use schedules and organizers, to help you keep track of what you need to do, and of deadlines.  When using your scheduler or organizer, priortize your assignments so that you make sure you get the most important things completed first.  Try to work in an area that has minimal distractions, so that you can concentrate easier.

Providing written instructions, and reducing your distractions should also help to aleviate depression, stress and/or anxiety that you may be feeling.  Your boss should allow for time off for counseling if needed, and should provide sensitivity training to co-workers.  He or she should also give you a clear outline of deadlines and consequences.  You should be allowed breaks for stress management techniques, if you're feeling especially depressed, stressed or anxious that day.  Also check with your HR department to see what employee assistance and counseling opportunities the company provides to it's employees. 

Talk to your boss, about developing an ergonomic work station.  This can help to relieve pain and fatigue by making it easier for you to be at your workstation.  Having a company that's willing to allow a flexible work schedule and flexible use of leave time can be extremely helpful for days and times that you feel especially tired or weak.  Reducing or eliminating the amount of physical exertion you have to do at work, is also especially helpful for days you're tired and/or weak. 

If you suffer from migraine headaches, talk to your boss about providing air purification devices, and eliminating flourescent lighting and providing task lighting.  Again, a flexible work schedule that allows you to work from home is especially helpful on days you're suffering from a migraine or a sleepless night.  Many of the other suggestions above, also will be helpful on these days. 

I know that even with the best of accommodations and the most understanding boss in the world, there still may be days that you just feel it's impossible to go into work.  I completely understand that.  As a matter of fact, I've been in such a pain flare for months now, that I'm sure if I worked outside the home I'd have been fired by now.  All a person can do, is to try and do their best.  This is one of the reasons why awareness of fibromyalgia is so important.  If people do not really know what it is, then how can we expect them to really understand.  Awareness and advocacy of fibromyalgia and all of the other chronic pain and invisible illnesses will be a passion of mine, until the day I die.  I'll do everything I can to get the word out there.  To try and make people understand that this is a "real" syndrome.  The pain is real, and so are the ramifications.

My 16yr Old Daughter, Fight's Like A Girl

I haven't really talked about any of my children on this blog yet, so I'm going to take today to introduce you to my youngest child, Courtney.  Courtney is 16 years old, and at the age of 15yrs 1mo old, she was diagnosed with PCOS.  PCOS (Poly Cystic Overy Syndrome) is another one of our wonderful invisible illness'.  I do believe that Courtney also suffers from Fibromyalgia, and I'm getting ready to start my research of trying to find a good rheumatologist that treats children.

Shortly before Courtney (who prefer's to be called Court) turned 15, she started getting sick.  She started having horrible stomach pain.  She was tired and lethargic.  Her muscles felt weak and ached, and she'd get muscle twitches and charlie horses.  She had constant headaches, and sometimes felt dizzy.  She was nauseous a lot of the time, and lost her appetite.  She had (has) trouble going to sleep at night, and became depressed. 

Our adventure led us to the family doctor, who ran test after test.  He seriously ran almost every test imaginable.  Even ones where she had to drink contast that made her throw up.  She had everything from blood tests, to urine tests, to imaging and ultra sounds.  The final conclusion after months of testing, was that she has PCOS.  The ultra sound showing several pearl-like strands of cysts on both ovaries was the final piece of the puzzle to her diagnoses.  Like I said above, since I've been diagnosed with Fibromyalgia and learned about this beast, I fully believe her to also have Fibromyalgia in addition to the PCOS.  She also was diagnosed as having depression.  -Yet another invisible illness to deal with.

I was searching for a photo of Court, that I had taken of her in the hospital one time after diagnoses, but of course I'm not seeing it in my hundreds of photos that I have on my computer.  One of her cysts became very large, and ruptured.  She was in so much pain that she was laying curled up on the bathroom floor, crying and asking me if she was going to die.  She was white as a sheet. Talk about breaking a mom's heart.  After she'd been at the hospital for awhile, all of the fluid from the ruptured cyst moved up into her chest cavity, causing excruitiating pain in her chest.  The poor kid was on I.V. morphine for about 4 hours. 

The people who have heard of PCOS without being afflicted with this condition themselves, say "Oh yeah, I've heard of that.  It just causes some cysts on the ovaries.".  That statement can be infuriating to a person who suffers with PCOS.  It's so much more then that.  In fact, a lot of people who have PCOS doesn't even have ovarian cysts.  The name can be so misleading. There's a gauntlet of symptoms and a person may suffer from one symptom, to many or all of the symptoms.  Unfortunately for Courtney, she suffers from a massive list of them.

Everyone has heard of diabetes, right?  Everyone has heard of heart disease, for sure.  Most everyone has heard of endrometrial cancer.  Everyone has heard of depression. So why then, hasn't everyone heard of PCOS?  PCOS can cause any one of these above conditions.  PCOS is the number one leading cause of female infertility in the U.S.  It can cause cysts, but as you can see, it also is a whole lot more then that.  Babies born to women with PCOS are even at a higher risk of NICU stays, then babies born to mothers without PCOS. 

My daughter, who should be enjoying the best years of her life in high school right now, is now homeschooled.  She takes her classes through our school district, in an online format.  She's a beautiful singer, who was part of our high school show choir.  Unfortunately, our director didn't know a thing about PCOS and apparantely wasn't willing to try to learn anything about it.  Therefore, if Court wasn't quite as peppy as she should be at a practice, or if she was having a really bad day and just couldn't make it to practice that night, she was yelled at infront of the whole group for it.  Courtney finally had enough, and had to give up her one real joy at the end of the 1st semester this year.  Here's a photo of her doing one of her solo's last year:

She loved the dinner theatre they held, and was so excited to get out there and perform for the crowd.  Here she is before she took the stage, along with my parents:

PCOS may have put a few road blocks in Courtney's path, but it hasn't stolen her spirit or personality.  She's still the same beautiful, goofy teen-aged girl that loves spending time with her friends. 

My oldest son, Cody, is an amateur MMA fighter, with a 7-state ranking of 3rd out of all of seven states. September is the national awareness month for PCOS, and we're hoping that with Cody's help we'll be able to get a huge all female fight scheduled, with the name of the fight being called "Fight Like A Girl", to raise awareness of PCOS and to raise funds for research.  Here's Cody at one of his fights:

Cody is the one on top, winning

  See, research is really needed for PCOS.  There isn't a cure.  There isn't even a treatment plan really.  Some doctor's throw some birth control pills at you to try and help with the symptoms.  Some doctor's throw metformin pills at you to try and help with the symptoms.  Depression meds may be prescribed.  That's about it.  If money can be raised for depression, heart disease, diabetes and cancer then why can't it be raised for PCOS research?  Again, PCOS can cause any or all of these complications.  I bought a new teal colored shirt a few weeks ago, and today I'm wearing teal for my daughter.  I'll leave you with a very poor quality video of Courtney and the show choir group doing the opening song of the dinner theatre, in case you'd like to watch some real life "Glee" today. They're doing the song "Don't Stop Believing".  That's a motto that Court and I both live by.  Please be patient.  The lights finally come on at the :55 mark, and the camera zooms in on Court around the 1:07 mark.

Tired

I had something I wanted to post, but I'm just too tired to put it together tonight.  My spoons are still all used up from Friday's disaster of a day.  I absolutely didn't want to get out of bed today.  My poor husband said that he tried to get me up 3 times, before I finally got up on my own.  He couldn't believe I didn't remember him trying to get me up.  I do vaguely remember the 1st time.  I remember asking him to please turn my coffee pot on, and he said ok.  That's the only thing I remember though.

Even though I was exhausted, I had to go out anyway.  It was my mom's 69th birthday so I had to go see her, and we had dinner with her and my dad.  Since getting home, I haven't done anything except to sit at the computer.  I'm going to have to give up on computer work though, and just go to bed.  My neck, shoulders, and arm muscles are killing me.  Hurts my arm muscles to even type.  I'll get my post together tomorrow for you all though.  Please remember to share this blog with your family and friends.  Also, I added an email subscription to the blog tonight.  You will find it on the right hand side, of the blog.  If you're not a fan on FaceBook yet, please join in the discussions there.  You'll find the FB page by clicking HERE.  Sending gentle butterfly hugs to you all.  Goodnight.

Pacing Yourself

One of the first things a person with fibromyalgia or any type of chronic pain disorder usually learns, is that they have to pace themselves.  I'm well aware of this, yet sometimes I "forget" and think I can just do whatever I want, whenever I want.  Even though I know better, that's what happened yesterday.

My husband is an avid sportsman.  He loves hunting and fishing.  All of the fishing he's done throughout his life, he'd never gone Walleye fishing during the annual run.  I couldn't believe it, because the Walleye run is a big deal around here.  When the run is at it's prime, you drive past the Maumee River to see guys lined up shoulder to shoulder out in the water.

This photo represents a very small amount of people, late in the evening Wednesday, in one particular spot.  To be completely honest, I took this photo more for the cloud that appears to have a silver lining then I did to try and capture the fishermen LOL.  Anyway, Jason had decided that this year he wanted to try Walleye fishing.  He bought a pair of waders from the next door neighbor, who hunts and fishes with him, and he was itching to get out there.

Jason had yesterday off of work, and that was to be his first day Walleye fishing.  He'd asked me if I wanted to go along with him, to get out of the house.  I said yes, that I'd take along my Kindle to read, and I'd take my camera.  Even though I still have a lot to learn, I love photography.  It's what I do for fun and relaxation.

I knew that I'd have to get up early, which is usually a problem for me where I have such trouble falling asleep at night.  I kept telling myself that it didn't matter, that I'd will myself to sleep if I had to.  I just wanted a fun day out of the house.  Yeah, well, that went over real well LOL.  The more I'd try to fall asleep, the more frustrated I'd get that I wasn't falling asleep, until I had myself in a great big mind tangle.  I finally gave up and crawled out of my bed, out to my computer for awhile.

All of a sudden I hear "Amy.  Amy get up.  Are you still going with me?".  I crept my eyes open, and moaned "Yeah, I'm getting up" :sigh:  Four hours of sleep.  Jason has a big truck.  This truck is high, and it doesn't have running boards to use as a "ladder" to get in.  I'm 5 foot 3 inches tall.  I usually never go anywhere with him if he's taking the truck, because I have to grab and pull my big butt into this thing.  I know it's going to hurt my shoulders and knees getting in and out.  I kept thinking to myself "Today I don't care.  I'm going to do it!".  Mistake number 2.

Mistake number 3 for me, was getting in and out of the truck more times then I actually had to.  His first stop was to Walmart to get his fishing license.  I thought about waiting in the truck for him, but we were at a store!  Items to look at.  People to watch.  Out among the living and breathing!  How could I just wait in the truck?  So, out slides my big butt and into the store I march.  Mistake number 4?  I walked right past the carts instead of getting one.  I usually always push a cart, even if I'm only grabbing one or two items.  It helps me walk and stand without as much pain, if I'm pushing or leaning on a cart.

Jason decided to go to the Sandusky River, rather than the Maumee River yesterday morning.  Unlike at the Maumee river where there's a whole parking lot dedicated to the river.  Where you can see the river and watch people fish right from your vehicle, the "fishing hole" at the Sandusky River is down a large grassy embankment.  He looked at me, and I looked at him.  Then I said "Just put my chair down here.  I'll sit up here and watch.".  He helped me get myself situated (right along side train tracks btw) and down he went to go stand in the cold river water and fish.

I forgot to tell you that when we got ready to leave, my Kindle had a dead battery.  Yep, of all times.  Jason grabbed the laptop and said that I could charge the Kindle off the laptop, and read while it was charging.  So I'm sitting there with a heavy laptop on my lap, my Kindle with it's charging cord hooked between the laptop and the Kindle, a huge bottle of iced tea, the bag I carried the laptop and Kindle in, and my camera with the big lens attached.  All of a sudden I hear a vehicle.  I look up and a guy in a railroad truck was mosing towards me down the lane beside the tracks, at the top of the hill, I was sitting at.  He stops and waves.  So now, I'm trying to get out of the camp chair with all of this stuff on me and on the ground around me.  I have to pick it all up and drag the chair to where I was nearly standing on the tracks to let him pass by.

I'm not gonna lie, by this point I was tired.  I hurt.  I was pretty disgusted with the entire day.  I move everything back to it's original spot and sit down again.  Now, the Kindle isn't charging off the computer.  It's still dead.  I have nothing to read.  There's absolutely nothing "pretty" to take pictures of.  It's getting hot out which makes me feel crummy to begin with.  I have to use the bathroom with absolutely nowhere to go.  By this point, I was kind of cussing myself out for coming along.

What happens next:?  Oh no!  Here comes the first of many trains that past by me so close the ground was trembling.  I just thought the whistle was loud.  The high pitched screech of the wheels on the tracks forced me to grab both ears and cover them.  It felt like someone was shoving ice picks through my ears, into my eardrums! All I kept thinking was "Please don't let this train derail!".

After a few more mandatory stops on the way home, a few more times of hoisting, pulling and dragging myself in and out of the truck, I was finally home.  I did not have fun.  It was not the nice, relaxing outting I thought it would be.  I hurt myself.  Shoulders, knees, and back hurt so bad that Ultram didn't touch it.  Hot bath soak didn't touch it.  Ultram kept me awake again last night until 4am.  Was already tired from 4 hours of sleep the night before.  Today?  I hurt.  I'm tired.  My head is absolutely killing me.  I feel kind of grouchy.  I did not pace myself yesterday.  At all.  You know what though?  Fibro didn't win because I did go out and do these things.  I didn't hide away in my house, behind my computer screen.

All of this, and he didn't even get one of these:

A couple of random guys was nice enough to allow me to take photos of the fish they got LOL.

Extreme Temperatures

Does the real hot, or real cold temperatures bother you?  It sure does me.  Yesterday I ate a pain pill, then steam cleaned my living room and dining room.  I figured I'd really pay for that today, but was surprised that I wasn't completely wiped out today from it.  Fast forward now, to 6pm and 83 degrees outside, and I feel like I'm dying!

I hurt just to barely move my arm to type.  I feel like I'm going to pass out.  All of my energy is just drained.  It's as if I had a plug in me, that someone pulled and drained all of my energy out.  My muscles are just burning and aching.  I've noticed that extreme cold makes me feel the same way.

I've taken the lazy way out, and ordered pizza to be delivered for supper tonight.  There's just no way I could stand in a hot kitchen over a hot stove, and prepare a meal tonight.  My spoons for the day are gone.  I almost feel like I don't even have one left to eat with, but know I have to eat.  I'd love to go take a cool shower, but there just aren't any spoons for that today. 

I had my son go and dig my bedroom air conditioner out of the garage.  Once it cools down in there, I just may retire to the bedroom and read on my Kindle.  The only problem is, my mattress is so old and dilapidated though, that it hurts me to be in it very long.  Right now, my wish list consists of a queen sized Tempur Pedic bed, central air for the house, an inground pool and a hot tub.  The pool would be used for the aqua-therapy that I'm supposed to do.  If only I couldn't convince my insurance that it was medically necessary so that they'd pay for one to go in my back yard LOL.  -Same with the hot tub, bed and central air.  Unfortunately, I don't think they'd see it my way.  =P

....And Life Goes On

Remember this grief wheel that I posted shortly after starting this blog?  I'm proud to say that I've almost come full circle now.  I waiver back and forth between Obsession and Acceptance.  I think that I'm pretty darn close to being into the full "acceptance" circle!

Between all of my ailments, I have pain daily.  I understand now, that nothing is going to change that.  I will always have pain.  The numbness hasn't went away, in my left hand and fingers.  I now accept that it may never go away.  I'm always going to be tired and drained of energy, although some days will be better then others.  I accept that.  I absolutely despise taking Ultram, but I now accept that if taking Ultram is the only way to get through a day of doing things I want to do, then it's ok for me to take it.  When I say that I despise taking it, boy do I mean it.  To give you an idea, I filled my very first prescription for Ultram the beginning of August, 2011.  I'm prescribed 40 pills to a bottle.  I did not refill my prescription until December 23, 2011.  At the time of refill, I still had about 8 or 9 pills left.  I used them very sparingly. 

Will my fibro and arthritis symptoms get worse over the years?  I don't know.  All I do know, is that they started getting bad a year ago May.  They've gotten worse, rather then better, throughout this past 10 months.  Therefore, I'm not going to give in to chronic pain and fatigue.  While I can, I'm going to get out and do as much as possible.  Today, for the first time ever, I said right outloud that maybe, just maybe, getting fibromyalgia and arthritis is a blessing in disguise.  Ok, I almost see you all cringing when reading that.  What I mean by that though, is that I'll never again take a pain free day for granted.  When I plant my flowers in my front flower bed this year, I'll enjoy the fact that I could plant them.  They'll look brighter and prettier to me, every time I look at them.  In other words, I'm going to enjoy life.  I won't take a single day, or a single activity, for granted again.

I refuse to allow my disorders to control me and my life.  I have fibromyalgia and arthritis, but I'm not fibromyalgia and arthritis.  Does that make sense to you?  I sure hope so!