The Topic No One Wants To Speak About

There is a topic that everyone thinks about, yes even the most conservative, and is affected directly by Fibromyalgia or Chronic Pain, yet most doctors skip over it completly, as quickly as possible, or ignore it.  It is also mentioned very little on the web, support groups or by individuals, considering how much information is really out there. 

SEX

So mom, dad, step mom, bro, and any other family members please stop reading now, I don't think you necessarily want to hear about me talking about sex.

You have pain, you are tired, not feeling so great about yourself, a little depressed.  Why should you think about sex, or care about sex?  At least this is what one doctor said to me when I asked about what I can do to get my drive back to what it used to be.  Just because the pain and all the fun stuff we deal with is there, doesnt mean we do not ever want to have sex again.

I have had many suggestions from doctors, and have read some suggestions online, including

• Plan sex for the time of day you generally feel best
• Take medications to allow the peak of the dose to occur during sex
• Avoid extra activity which might increase your level of fatigue
• Do gentle exercises to relax and to improve your range of motion
• Take a warm bath or shower to soothe joints and muscles
• Try new positions which might alleviate pain during sex

I can go through my initial reaction to reading this.  The last thing we need is more tasks to do for one activity.  This is alot of work to just have sex.  So you have to plan for the best time of day, and correspond that with the peak of your medicine (oh that is lots of fun, it is like Ward saying to June "lets push our beds together tonight).  Exercise to just have sex, I always thought sex was exercise in itself.  Then we have to take a warm bath or shower, I am tired already, as well as bored and you want me to have sex.  Imagine how the partner is going to feel "sorry hunny not right now, it is not that time of day", that is real spontaneous.  Oh wait the doctors have an answer for that as well,

"Sex can still be spontaneous at times. During those occasions you find yourself feeling better, seize the opportunity for physical, sexual gratification. "

If only your partners and your sexual desires would be on schedule with when the Fibro tells you it is okay.

Now I understand, that saving your energy, planning (especially for men suffering from Fibro who use the littly blue pill), and the hot bath, may sound good (or you can have your partner join you in the shower).  However, we are all human and sometimes our wants do not match what is good for us.  Also sometimes we want a sense of normalcy and this just isnt it.

My question is what about us single mom, and single fathers, who don't have the option to relax and follow all that is suggested?

There are things we can do.  For example, with Fibro we aren't as active as we used to be, and the meds make us a little chubbier, a combination of both can make us gain 10, 20 or more pounds.  This makes us feel absolutely horrible about our self image, and not very sexy.  We can start to take care of ourselves, a little bit of exercise, do our makeup, something special with our hair.  The better we feel about ourself, the sexier we feel, (also the more positive you feel will have other benefits for you). 

Positions, pick up the Kama Sutra, there has to be one position in there that will work for you.

Although you may not want to, there are great benefits to having sex for people who suffer from pain. 

"It turns out that sex, even without orgasm, triggers endorphins that ease pain and relax the body so that sleep becomes easier."

 Imagine that, it can ease pain. 

Whether you are 20, 40, 60, 80, male or female, the sexual desire is always there, and if you say it isn't, I don't believe you.  We have Fibro, it does not mean we are dead and lose the wants and needs we had before being diagnosed.  Try being spontaneous, try buying a new outfit, tell your spouses/partners what you want. 

The long term effects will be beneficial, at least they have been for me.

Remember, as well, the intimacy you have with your spouse (should you have one), will bring a bit of the connection back that may have been lost, it has for a few people I have talked to.

Imitation

I am going to apologize in advance everyone, this is going to be a bit of a rant.  I am truly trying to be more positive this year, not always working, I'm not perfect.  Today I had someone say a phrase to me, that made me want to say "are you bleeping serious", but instead excused myself and left very quickly.

What did they say?

"Oh I am tired sometimes too, I think I have Fibromyalgia"

I am sure it is not just me who has dealt with this.  Family members, close friends, and even strangers (upon hearing what I have), say "oh I am tired" or "oh I have one of the symptoms" and follow it up with "Maybe I have Fibromyalgia too". 

When this is said to me, so many things go through my mind. 
"Do you really want something as debilitating and painful as Fibromyalgia"
"Do you even know what Fibro is"
"Are you that desperate for attention that you have to imitate what I have"
"Your tired welcome to life sweety"

Not all that nice I understand, but really, these people think that what we go through is a walk in the park, that they can just say "hey I think I have that too". 

The strangers do not bother me as much as family members and friends saying something, sorry everyone, idiotic.  Is it not bad enough that we have doctors who do not believe us, or the fight we go through everyday (I am not looking for sympathy), but now we have to listen to you complain about being tired, or having a headache and then saying "oh maybe I have it to", no thank you, I do not want to. 

In fact, I have a family member, sorry to this person for mentioning this, who called me and said "you know I am feeling tired, and a little achy, isn't Fibromyalgia hereditary maybe you got it from me", this was coming from the healthiest member of my family, who does not experience one symptom that you and I may experience.  My response was simply this "you know when I go to the doctors for a checkup, on the back of his door he has a pink sign that says "Symptom - Tired, Welcome to Life."

To the family members, the friends, the support people, and the strangers Fibromyalgia is not explainable in words, if you feel tired, achy or have a headache it does not mean you have Fibro.  If you feel like you have been hit by ten or twelve mack trucks over and over again and that is a good day, then we can talk.  I know I am very fortunate and their are worse people then me.  So please do not try to sympathize with us , or relate to us with your ailments.

I think I have made myself look like an uncaring, selfish you know what, which means my rant is done.

If you are healthy be thankful, if you have Fibro be thankful we are still truly privileged.

Update:

I was at my doctors last week and took a picture of one of the new signs on his door.  For all those people who do not have Fibro, but would like to think they do because they have normal aches, pains and tired.  Please read this sign.

Don't Touch Me

Who  hasn't been there, you are in so much pain and a family member comes and hugs you, or you are at work and have to shake hands.  All you want to do is yell DON'T TOUCH ME.

I grew up in a very affectionate family.  Moms always hugging and kissing us.  I was daddys little girl, sitting on his lap, arms linked, hugs, everyone knew I was a daddys' girl.  With my children I never stop hugging them, or kissing them, holding hands, they are still at the age where they don't get embarrassed, not that their embarrassment will stop me.

So what's the problem?  I can not stand people touching me.  I actually want to push them away and say never touch me again.  When I touch someone, I have the control on how hard or how soft the touch is, I have control on when and where we touch, and what my body can handle.  When someone touches me, I have to refrain myself from pushing them off.

Why does this occur, I have received the typical answer "this is part of Fibro".  My Pain Specialist who is also my Psychiatrist has told me
"it is a natural way for pain control, a way where only I have the control, and the one way that I know will work for sure". 
Is there anything that I can do about it, nope.

The weird thing is that I have this feeling more so when I am having good days, as if the persons touch is going to bring on the attack.  It doesn't make sense, but it is one of the realities I have had to take on when Fibro decided to come into my life. 

The real question is how do you tell people, don't touch me, especially your children.  With my children I have learned to bite my tongue.  I have been rude to others though.  I am one of those butterfly hug people now.  You know the person who stands so far away from you that you can fit another person in between and quickly pats the back and breaks the embrace quick.  I have learned to always stand further away, just that extra step back so people wont bother to give you a hug hello or goodbye, or always hold something so that I do not have to shake hands.  I have become rude, without realizing it, that is till recently. 

But do I want to change?

Pushing Your Limits

A doctor I see compared having Fibro to a gas tank. 

"A regular person has a gas tank the size of one you would find on a Hummer, and a person with Fibro has a gas tank the size of one you would find on a smart car."

We just do not have the energy to do what a regular person would.  However, as my doctor says

"We can make our gas tank grow"

How? 

It is very difficult.  One of the things with Fibro and Chronic Pain is that we tend to stop pushing our self, we stop exercising the way we should, we stop doing what we would normally do, cause it is just too much for us. 

But do we really push ourselves?  Or do we just say "I can't, I have Fibro"?

If we stop exercising, we start to gain weight and lose the mobility in our body.  The pain becomes worse because we are unable to move or stretch as we used to, and the littlest movement is painful.  If we stop doing what we love, we become depressed which also causes a lot of pain for us as well.  It is an evil cycle.

So why let it control us?  Why not fight back?

I understand the fear, if we push ourselves then another attack will come.  But if we don't push ourselves, the attack is going to come from the inactivity and the depression. 

What do you do in a normal day, a week a month?  Figure out how you can add one thing a month that you used to do, and do it.  The sense of accomplishment, the joy you get from doing it will do wonders.  You'll be tired the next day so set up the next day as a pamper day, movies, books, whatever you like.  But you will have a day that you loved and enjoyed.  And slowly increase on the third month try two things a month, on the fifth month do it three things a month and so one until you are doing it once a week.  You will not believe the difference it will do for you.

Exercise.  If you exercise try an extra five minutes and slowly increase it.  If you do not exercise than try something as simple as walking around the block.  Do one block for a week or two and then slowly increase it to two blocks.  Not only will you feel better about yourself, but you are conditioning your body, and you will have more energy, you are increasing how much energy you do have.

The main benefit I have found with doing this, besides more energy, feeling better about myself, not as depressed (and hopefully it will go away completely), is that when I have a Fibro attack, I seem to bounce back faster, and I want to go back to exercising and making myself happy, I do not let it keep me down.  

You can help yourself by the simplest thing.  Push yourself, the greatest rewards, and happiness are from what you work the hardest to achieve. 

Negativity

We have all been there, nothing but negative thoughts.  Pain everyday, half the doctors think that we are imagining the pain and are drug seekers, the half that do believe us maybe 1% actually know how to help us, and even that is limited.  Never have enough energy to do what we want, constantly disappointing our children, family members, friends and ourselves with not being ourselves and having to say no.  How can we not think negative?

Does the negativity make us feel better or worse?  Have you ever thought about it?

Like you, I have gone on many Fibro/Chronic Pain sites, support groups, message boards and all I find is that the majority of the people are complaining, and the people who are offering tips are getting nasty remarks or being told they do not have Fibro.  So why the negativity?

Is it hard?  Of course. 

Is it worth it to be negative?  NEVER

We have enough negativity with the doctors alone, we do not need anymore, especially from ourselves.

It is hard to find the positivity in our symptom, condition, disease.  Find it though.  Yes, it is easier said than done.  Your in pain, another doctor says something you don't like, new meds aren't working, find the positive.  I am thankful for my daily pain and not for a full blown attack everyday, doctor said something idiotic, good closer to the right doctor, meds aren't working, we are still fighting for the right one.  The negative will do nothing but bring you to a place that is just laying on the couch, watching Maury Pauvich and who is my babys daddy, and how is that going to help you at all.  The one thing I found that worked for me also is the complaining had to go away.  Who likes to hear a kid complain or whine?  No one, so why is it that people want to hear it from us?  They don't.  If that is all that you talk about, that is all people talk about with you.  Fibro is not who you are or who I am, it is a part of me.  So now when people ask me how I'm doing, I say fine.  If they want more detail I say its a better day, or if its not, I say its a bad day.  That is it. 

What makes you smile?  What makes you laugh?  Use those things.  Have a song that always brings you to a better place, play it.  I have a few including guilty pleasures like New Kids on The Block (sorry dad), and Sir Mix Alot (yes we all know the song), and then a new one Pretty Girl Rock.  Everyone has a song that does it for them.  Find the things the bring you out of the negativity. 

If you want to be negative, fine do it.  But why bring your negativity to other people?  I have seen on support boards, facebook pages, in groups people offering suggestions, things that have worked for them and they are shut down, accused of not having Fibro.  Who are these people to even suggest or bring that attitude to someone who is trying to offer someone something that is positive.  What works for you doesn't work for me, necessarily.  So if it doesn't work for you, why put that person down, or put out negative comments.  With Fibro and Chronic Pain we need support, positive support and if you cannot supply that then please do not comment at all.

We cannot rely on doctors to help us, we have to figure out what we can do for ourselves to make us able to live, not survive, live.  Negativity will not allow you to live, it will not allow you to move forward, so omit it from your life.

Support For Others

When you have Fibro or Chronic Pain we always look for support, help and understanding for ourselves.  It is rightly deserved.  However we are not the only ones going through our daily struggles. 

What about the people who are around you on a daily basis?  The spouses, the moms, the dads, the siblings, and most importantly (at least to me) the children.  Although they do not deal with the pain, exhaustion, and everything else we do, they have their own struggles.  No matter how much you try, you and I will never understand what they feel. 

I have heard "so what, if they love us they should deal with it", or "why should I have compassion for them, when they don't feel what I go through?".  What do they go through? 

Think of it this way, the person you love the most, there is something wrong with them, take something simple a broken bone.  You have sympathy, you want to help where you can, and do more for them, putting more on yourself.  That is just for a broken bone.  Now lets say there is something wrong with your loved one that doctors just cannot figure out.  The frustration you would feel, the anger, the sense of helplessness.  Now switch it around.

They have daily pain, and something that is attacking their body on a daily basis.  There is no cure, very little medical help and at any day they can have a huge attack where the pain is so great that giving birth feels like a walk in the park.  They have mood swings, never want to do anything, don't always want you touching them, and are dismissive when you try to help.  How would you feel?

You are helpless, there is nothing you can do to ease the pain.  You are frustrated, angry at the situation and start to resent them.  All of those feelings keep building and building as the days go by. 

The people around us, who also deal with Fibro/Chronic Pain do not get enough applause, or thanks for what they go through. 

A father or mother who sees their child going through pain is heart wrenching.  A spouse who is supposed to help, protect (especially for the men), and stand by their side is hard and takes great courage and strength.  Or there are the siblings and friends, who are always there, even when you withdraw, no longer want to go out, or answer your phone, who are just trying to help.  How do they do it?  How long can they do it for?  

What about the children.  They are supposed to feel protected and seeing their parent constantly go to doctor after doctor, and in some cases hospital after hospital, it is scary.  When mommy and daddy are unable to play, or do what they would like.  What about the times that the child just wants a hug and you cant say no, when they do hug you, you tense up because of the pain.  They notice this.  How strong are these little guys?  They are, to me, our little heroes.

The spouses, parents, siblings, and especially the children, DO NOT FORGET WHAT THEY GO THROUGH.  Every chance you get, every minute you can say thank you, tell them you appreciate them and what they do for you.

Remember we are not the only ones who are affected, the people around us are affected differently, but strongly.

Strength

I saw a saying on one of the Chronic Pain networks available on Facebook, that made me think, so true.  What was the saying?

"It's Not The Size Of The Fibro Monster,
But The Size Of The Fight In You!"

I have heard many sayings, that truthfully just PISS ME OFF.  These are just some of them;

It Can't Hurt That Much
Suck It Up
Work Thru It
We Are All Tired
You Just Don't Want To Go To Work/Clean
Its Not A Real Condition
You Are Just Looking For Drugs
My Favourite, BUT YOU LOOK FINE

Those are just some of the phrases I have dealt with, and many from family and friends.  There were many points in the last 6 years that I said "I'm done, I give up".  Each time this happened one of my children would come and say something, make me laugh or just give me a kiss, and I would say I just can not give up, they are worth everything.

I didn't give up when the Fibro Specialist said to me that he could no longer see me because I was not good for his statistics with the government, I did not give up when I went to see some quack (my father referred me to) who told me to no longer dry or style my hair and shower with a lawn chair in the shower, I did not give up when I went to the hospital to just get help for sleep (per my doctor) after days without sleep and the doctor was ready to take out my gall bladder (I don't know why), and I did not give up when my spouse left me and to this day when we talk (we are still on very good terms) says to suck it up, or when my family says oh but you look good.  I could go on, as I am sure you can.

It takes incredible strength, patience and perseverance for someone with Fibromyalgia or Chronic Pain to survive.  The doctors, individuals, and medical institutions alone take more than one person thought possible to navigate and to find someone who will help.  Let alone to deal with the individuals, insurance companies, family and friends who do not understand, do not have compassion or say one of the phrases that just wants you to yell at them.  It takes incredible strength that one never thought they had.

You may have thought you were strong, but until you go through a full blown attack, you do not understand the strength one has.  Until you have dealt with a doctor who looks at you and says "oh its nothing", and it happens more than one can count, you do not understand the strength one has.  Until you deal with your friends and family who do not understand and instead of helping, hurt you do not know the strength we have.

We deal with it because we do not have a choice.  We deal with it because it will make us stronger.  We are able to deal with it because WE ARE STRONG.

Do not ever dismiss or let someone else dismiss what you go through and what you deal with.

YOU ARE STRONG.

Trust Yourself

Fibromyalgia affects all parts of your body and can make your body do things it wouldn't normally do.  One of the things that has affected me is Candida.  I have been hospitalized twice and two surgeries from it.  One time I had to go to three separate hospitals before a doctor would not dismiss me and just say it was Fibro.
After the surgery, I finally said the doctors haven't been able to help and I am going to take things into my own hands.  I found the most common item that kept coming up in my research was Yogurt, more specific Yogurt with Probiotics. 
Yogurt, I hate the taste and thought I would never be purchasing it on a weekly basis.  I know it is healthy and provides calcium which every woman needs, but that's not why I buy it.  Eating yogurt actually worked better than one of the medications the doctors prescribed.

Candida Albicans is a yeast that occurs naturally in the human body. Normally it lives in harmony with a variety of other microorganisms and actually performs a couple important functions.  The problem occurs when something upsets the balance of bacteria in the body and this allows the yeast organism to proliferate and take over all the healthy microorganisms.

There are many symptoms that come with this and it DOES NOT just affect women, men have symptoms as well.  Some of the symptoms are;

Symptoms	More detail
ABDOMINAL PAIN	Sometimes confused with IBS
FATIGUE	You struggle to get up in the mornings
BLOATING, GAS, INDIGESTION	Sometimes confused with IBS
ORAL THRUSH	Sometimes appears as white film on the tongue
JOINT PAIN	Sometimes confused with arthritis
WEIGHT GAIN	Can appear to be very resistant to dieting
FUNGUS	On your fingernails, or athlete's foot
CONFUSION, DIZZINESS	You struggle to keep up with life
URINARY INFECTIONS	Infections that aren't helped by antibiotics
RED, ITCHY EYES	You can't find eye remedies that help
RASHES AND ITCHING	Caused by the yeast infection
DEPRESSION, MOOD SWINGS	Occur randomly and without warning
CRAVINGS	For alcohol, bread and sweets
WHITE COATING ON TONGUE	Often in the morning
ACNE	And other skin problems like eczema

A few of the symptoms are similar to Fibromyalgia and can worsen your Fibro symptoms. 
 Is Yogurt the cure?  No, not at all.  I still have some problems, but the Yogurt has had more benefits than any other medication that the doctors have put me on.  A natural substance over a chemical substance.  When they spoke to the doctors they were all very dismissive "Oh yes, that helps as well".


There is a Candida diet, very similar to the Fibromyalgia diet.  Basically  no sugars, no processed food, and as natural and organic as possible, I know no fun. 


What is my point?  I have two. 


The first, trust yourself.  I have two friends who were diagnosed with Fibro, mainly because the doctors just did not want to deal with them anymore and didn't believe it was Fibro.  After speaking with me, they went into the doctors and found out that they had Candida.  Please do not take what the doctors say as the word of god.  Doctors are wrong, doctors are not always helpful, doctors make mistakes.  Only you know your body and only you know for sure if what the doctor is saying and prescribing is working.  If it isn't speak up, don't be afraid, only you can fully fight for yourself.


Secondly, natural over chemical.  Medicine is not a bad thing or a four letter word.  Medicine can do wonders for some, but the same medicine can be a detriment for others.  Taking a chemical also has long term effects that doctors do not tell you.  However, if you can take something that is natural and works the same as a chemical please take the natural.  The key I have found is to find the holistic and science side and combine them.  Find what works for you, without putting your body through the ringer.


YOU MUST TRUST YOURSELF, YOU ARE THE ONLY ONE WHO KNOWS YOU.  QUESTION DOCTORS, AND RESEARCH

Guilt & More Guilt

The first snow day of the year, the first snow day in 3 years and my kids were so excited, especially my daughter it was her first snow day.  We knew the night before and we had planned to take the new sleds out for a test drive.  I woke up my body told me NOPE DON'T THINK SO...

I woke with the beginnings of the flu, and the beginnings of an attack.  I would fight through the flu, but an attack you can't work through it.  In my mind I was trying to figure out any way possible for me to get on the hills.  I thought lay down on the couch for a bit and we can go after lunch.  That was laughable, after I got up cooked lunch, did the dishes I was done, the pain was getting worse and I could no longer stand without the room spinning around. 

I felt so guilty I couldn't take my kids out sledding.  A tradition.  An activity that we all love.

My kids were great, they checked my temperature, played cards with me and were very gentle.  They understood and still had fun, still played, and we read together, but I felt so guilty. 

I am not great when I have something a certain way planned in my head and it doesn't go that way, I get upset and frustrated (I like things to go my way, yes I know how that sounds, but I'm honest).  But to not be able to do something because your body isn't working is maddening.    I know my children are disappointed, but they made the best out of the situation.  I love them for that.

However, guilt works wonders on a mother.  I usually order takeout for dinner when I am not doing so good.  Not last night, I had promised my daughter Tuesday night that she could cook dinner, she loves to cook dinner (from scratch) and I encourage what they love.  At 4:30 my daughter asked with her apron on,

"Mommy you ready to start cooking?"

My body was saying NO and the pain shooting through my body was making its point, but my heart and head said you promised.  I stood up, felt the room spin, and was the sous chef.   We made Roast with Homemade Macaroni and Cheese.  My body made me pay, and still is, but to see the pride in my daughters face made any pain worth it. 

How do you deal with the guilt?  Even if the children understand and they are not upset it doesn't help in the guilt, in fact it makes it greater. 

I try with all that I have, not to let my Fibro affect my children and their activities, but it is not possible.  When you are unable to stand, see straight, or the pain is blinding it is going to affect your children and what you can do with them.  I am thankful for it not stopping me everyday, but the days it does the guilt is overwhelming.

How do you deal with guilt?