The Voice

Morgan Freeman has one of those amazing voices that you can hear inside your head when you read a quote by him.  I often times read this one just to hear his calm strength in the words that I try to live by each day.

The Brother & I Have Met

I know it's morbid humor but it's also true in my opinion and it makes me laugh.  Laughter gives us strength to keep going.

Response To A Forum Post

As I've mentioned in the past, I am a member of a Fibromyalgia forum over on MDJunction.  I read a post this morning authored by the daughter of a woman who has fibromyalgia.  It touched my heart because any time a family member or friend reaches out to try and understand this disease and how it affects their loved one is important and special.  We want to be understood and we need the support of those that love us.

I'm not including the post by this adult daughter because it's not mine to share.  However, I have chosen to put my response to it here on the blog in hopes that it may help others to see the picture of fibro from a patient's viewpoint.

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I'm going to keep scrolling up and reading your post so that I can respond to things you mentioned. But before that, I want to say that everything I write here are only my opinions/beliefs based on my own experiences with having fibromyalgia.

I think that fibromyalgia is a progressive disease of the central nervous system, including the brain/spine/nerves. Our pain does get worse over the years, we do become more debilitated by the pain and other things that often times go hand-in-hand with fibromyalgia. Those things can be: Irritable Bowel Syndrome, spastic bladder, tempomandibular disease (jaw disease), migraines, sleep apnea, just to name a few.

I also believe that even as fibromyalgia progresses, it can also go into remission for periods of time. So you have people who become better, more active, more like their old selves for a period of time but then when the remission ends, they may be worse than before that remission began. All of that said, some people never go into stages of remission.

Fibro can stay at the same level for long periods of time, it can have those remission periods and it can progress quickly. It's different for everyone.

As far as your mom being pill dependent: There is so little that gives us any relief from a pain that never ends. The question is never: Are you in pain? The question is: What level of pain are you in?

This is my thought regarding medication: We are suffering and if medication helps, we should be allowed that. We're not taking the medications for no reason other than the high they can give an addict. There's a vast difference between medical need and recreational use. People would not question a victim of cancer needing pain medication to help their quality of life, why do they question our need of them for the same?

There is a fine line for us, and believe me, we are aware of it - Take the medications and suffer less pain but sleep too much, feel lethargic and not really present in our own lives at times (or) do not take them, or don't take them often enough and feel that pain constantly but we're awake and mobile and present.

Think about this: When a person is in pain, any pain - a cut, a fall, a broken bone, a charlie horse in the leg, a headache - the brain only wants to focus on that pain. It's hard to think past it, beyond it until it starts to heal or you take aspirin or stronger meds. This is our life every minute of every day. We do not heal from fibromyalgia.

As for your mom's sleep issues - staying up all night and sleeping all day: Most, if not all of us have sleep issues. We have sleep apnea and/or we're chronic insomniacs. Many of us cannot achieve stage four of sleep which is where the repairing of our bodies happens. There are many forum posts about this on the Fibromyalgia forum.

We wish we could sleep like normal people. Go to bed at night and wake in the morning, rested and ready for the day. But, as I mentioned, this is a disease of the brain and since the brain controls literally everything the body does, our sleep does not escape its reach either. It comes to a point for us that we take any sleep we can get. A five minute nap at noon, a two hour nap at 4 a.m. A twelve hour sleep from noon until midnight.

You mentioned good diet, exercise, mental and emotional therapy, support system and positive outlook as things your mom can do to try and help herself. You're right, all of those are important. But, there's so much more to it. It's easy to offer up those things as helpful suggestions but not so easy to put them into practice for a patient of fibromyalgia.

Let's talk about exercise first. In my opinion, exercise isn't really about relieving our pain. Many of us report feeling worse pain and exhaustion after even the lightest exercise and/or stretching. The reason exercise is so important for us is this: It's about maintaining muscle strength, flexibility, joint fluidity and our ability to remain mobile.

We are in so much pain and constantly tired (due to that lack of good sleep) that we want to stay in bed and rest or sit in a recliner or on the couch and rest. Some of us do end up bedridden or wheelchair bound because we have given into that feeling of - I don't want to get up and move because it hurts me. The worst thing we can do for ourselves is give into that mindframe. We have to push ourselves, push through the pain, get out of bed, at least do some stretches, brush our teeth, take a shower. We must continue to live as normal a life as we can possibly manage. Simply put - use it or lose it.

Your mention of emotional and mental therapy for your mother: Also a great idea and much needed for many of us. Being diagnosed with an incurable, life altering and painful disease of any kind will put a person into a tailspin. It changes everything for us. We deal with shock, disbelief, anger and sadness. We go through the five stages of grief - if you havn't researched that, I really suggest that you do. It explains so much, and so well, what we go through.

Some people can go through those stages fairly quickly and get a good grasp on this new life that has been forced upon them. Some people may struggle with it for years. Just when they think they've found the acceptance stage and they're doing better, they take two steps backwards and have to deal with the sadness and anger all over again. I personally believe it's a never ending process, finding ways to accept the disease and our new lives within it.

Therapy can help a great deal with that but the key there is to find the right therapist. There are still too many people who do not believe in fibromyalgia. Or they think textbook answers and therapy will help everyone. Fibromyalgia affects everyone differently, not only physically but mentally and emotionally as well. Thus, therapy cannot be a one size fits all. We just want to be heard, someone to listen, believe in us and allow us to spill out the ocean of emotion that we feel over being sick.

A support system is the best thing any fibro-patient can have. Our family, friends - loved ones who believe and listen and help us. We feel horribly guilty for how our disease affects those we love. When one person in the family becomes sick, everyone feels it. We need to be reassured that we're not a burden, that we still have something to offer our families, friends and the world at large.

This is a complex illness that the doctors, scientists and medical researchers do not yet understand. Precious little is known at this point but there are many studies being done and things coming to light.

I agree with you that your mom can make small changes to her life and they will help her to feel better overall.  Be as patient as you can, maybe offer to do some of those stretches with her. Most of all, just love her.

I have an adult daughter too - she's 23. I have such a hard time telling her or my adult son about being sick. I don't want to worry them, don't want to put this load on their shoulders. Moms think they always need to be strong for their children, even if that strength is simply not opening up about their illness and how it makes them feel.

The Top Ten Realities of My Life - A.D. (After Diagnosis)

Recently, while talking with my therapist, I began thinking about the realities of my life with fibromyalgia.  I thought I might do a blog post about that but the more I considered how it impacts my life, the more overwhelmed I became.  It seemed impossible to list every reality, every change.  

I mentioned this to Heather a night or two later and she said, "How about ten ways.  The post could be titled: The Top Ten Realities of My Life - A.D. (After Diagnosis)."  Heather recently got a new job, a career really and she was on fire with creativity so came up with this awesome title.

Here is my list of realities but I'm not sure they are in order of importance.  Even trying to sift through them all to find the top ten is too difficult.  Nonetheless, it is a list to start with.

1.  Pain.  It has become my new normal.  I do not remember my life without feeling pain every day.  I miss even the memory of that and I'm not sure when it faded away.

2.  Exhaustion.  I never feel full of energy, like I can do everything I want or need to.  I'm angry over the limitations fibromyalgia has placed on what I can accomplish each day. 

3.  Medication.  I do not like taking prescribed drugs to control symptoms of this disease.  They are pain and muscle relaxing medications and I worry about addiction issues.  I've fought addiction my whole life because of my parent's problems with it and now to feel forced into taking them is frustrating and frightening.

4.  Existential Crisis.  This is what my therapist calls it.  Basically, I'm scared because I feel that my very existence is being threatened by fibromyalgia.   I'm frightened that fibromyalgia will make me bed ridden, wheelchair bound, give me dementia or Alzheimers or ultimately be fatal.

5.  Expectations.  I often times feel as if I spread myself too thin, trying to be there for everyone, have time with them, fulfilling what I perceive to be their expectations of me.  When I think I've dropped the ball on any of that, I see it as failure in myself. 

6.  Control.  Having a disease teaches you that control, in many areas, is a myth.  Something can happen to us without asking permission, without our giving it.  I need to control how fibromyalgia is affecting my life and sometimes, I simply cannot.  As hard as I fight on every level, sometimes the disease wins because of pain and exhaustion. 

7.  Grief.  I miss me.  As much as I know that who I am, the base personality is the same - how I'm allowed to live my life has drastically changed.  I miss the Jody that was always on the go, conquering anything set before her, working hard and taking a sense of pride in that.  I miss feeling like I was strong.  I don't want to grieve my old life and learn how to live this new one but I must.

8.  Communication.  I have a difficult time sharing what bothers me, with others.  I would rather hide it.  Hide the pain, the exhaustion.  Hide my tears - cry in the bathroom, alone.  I need to be the rock and the strength of my family.  I don't want them to worry.  I feel weak when I talk about fibromyalgia.  I get tired of people thinking they can fix me - they can't fix a disease so please do not try, it's frustrating for me.  Just know how hard it is for me to open up and when I do that, all I really need is for you to listen.

9.  Stability.  This is physical and emotional.  Physically, I never know when I'll have a bad or good day within the disease.  I don't know when I'll have a flare.  I can no longer plan - not just weeks or months in advance but tomorrow.  Emotionally, I want to find a place of acceptance, of peacefulness in what my life is now.  It's still beyond my reach.  

10.  Confusion.  My life has been turned upside down.  Like a puzzle that was once put together but is now scattered across the table in pieces, I try to fit them together and make the picture clear again.  And I wonder if that picture will even make sense to me when it's complete.

My Tank Is Not Full

I have come to realize that I won't ever get my life back as I once knew it and lived it. I am the same woman - I'm intelligent and funny, compassionate, loving, a good mama, honest and loyal. This disease cannot take any of that away from me.

That said, how I am allowed to live my life has changed. I get tired more easily now. I'm in pain. I do not get to run around all day, doing anything that comes to mind. I have to plan and make choices. Laundry or dishes? Errands or an evening out for dinner? I cannot do it all, every day.

Fibromyalgia forces us to prioritize our lives. It demands that we decide what and who is important to us. How we spend our time and who we spend it with - because our energy level has very little reserve. Our tank is never full, it's always hovering just over the empty line.

And yeah, that does suck. But, the silver lining is that we begin to realize how precious life is. How valuable time itself is. We learn to make the best of ours. We learn to make every moment count.

Do You Ask Yourself These Questions?

 

Some people do not believe in the progression of fibromyalgia.  I do.  Not only physical progression but mental and emotional progression as well.  Nearly four years into fibro, I am not much better at navigating the emotions and thoughts that go along with this disease. 

I'm incredibly sad, confused, angry, even full of rage at times over what this has done to my life, to the woman that I once was.  Being the kind of person who is in her own head a lot, I ask myself questions.  I try to do the work of self-analyzation, healing and growth.  I thought I would share some of the questions that I ask myself regarding living with this disease:

How do you live with constant pain and not be angry?

How do you live with constant pain and not hate your own body at times?

How do you not see your body as the enemy?

How do you see all of the changes to your life and not want to scream and cry?

How do you witness the changes to the lives of your loved ones and not feel guilt?

How do you not grieve the person you once were compared to who you are forced to be now?

How many times do you have to whisper, "Why me, God?"

How many times do you have to talk yourself out of feeling like a burden to those who love you?  Like you are trapping them into living this life with you, because they don't want to be the jerk that leaves over it or the person who avoids you.

How many times do you open your mouth to try and communicate what's happening to you on every level, only to close it because you can't even explain it?

How often do you push past the inexplicable agony and staggering exhaustion to do the things that need to be done?  Cooking, cleaning, laundry, errands, interacting with people.

How often do you wake up in the morning and have to talk yourself into getting up because it hurts and you're so damned tired?

How often are you full of sorrow over having to give up a job, a career, school and you now feel like an unproductive member of society?

How do you help people to understand why you can't spend time with them or go do fun things that they want to share with you, because you're in too much pain, you're too tired, or you dread the flare that will inevitably happen because you did 'too much' according to the limitations fibromyalgia has placed upon you?

How do you stop yourself from beating your fists against the limitations?

How many times do you have to revisit stages within the five stages of grief? 

Why do I work so hard to hide my symptoms, tears and emotions from my loved ones?

When I do talk about it, do people get tired of listening?  Do they understand how difficult it is for me to share? 

How do I make people understand that they cannot fix me?

What happens if the medicines quit working?  How will I ever live with that level of agony?

Would it be better, unselfish to let people go so they can have a more fulfilling life than what living with a sick person provides?

Why is every day of this disease different?  So different that navigating it is nearly impossible because -nothing- seems stable.  It feels like the foundation I stand on is trembling, crumbling.

Why won't some people believe that I'm sick?  How could they ever think I would make up something as awful as this is? How could they believe I would choose to live like this?

How do I accept that I will always be ill?

Am I a burden?

Am I still pretty?

Am I still sexy?

Am I still smart or funny?

Am I less than I was?

I have precious few answers to those questions.  I realize that rather than doing better with this, I might be doing worse in some areas.  Fibromyalgia has progressed on every level.  It is too big for me. 

I have always been a strong person, a strong and fierce woman in the face of any crisis.  Fibromyalgia puts me to my knees, begging for answers, for a sense of peace within my illness, within my whole life, as it is now.  Next week I start therapy.  I feel both a sense of dread and relief.  I am hopeful.  I'm scared.

Flu & Fibro

The flu has been running rampant through our family for three weeks.  My son was the first to get it.  Then my husband, John.  Next came both grandchildren and then myself.  Now my daughter is getting it.  Somewhere in there, even my niece, Heather, got it.  She visits often to spend time with us (me) so maybe she got it here or possibly at work.  Either way, the flu has kicked our collective butts.  

It manifested differently for all of us.  John had a sore throat for a couple days before it slammed into him like a bus.  I had a cough for a day and then it ran smack over me too.  Heather was here visiting one night, felt fine and the next morning woke up with the flu full out.  So, whether it creeps up or punches you right in the face, it's been a nasty thing to have. 

It also seems to linger.  You get past the worst of it in a week or so but  still struggle with some symptoms for a while after.  I'm right in the middle of the worst of it.  My chest is burning, a bad cough, sinus infection, sinus headache, sore throat and ears.  

Where fibromyalgia comes into this post is my personal philosophy:  If you have a disease, you should be exempt from 'common' illness.  Whether it be cancer, MS, Parkinsons, fibromyalgia, RA, lyme's, chrons, lupus - whatever disease you happen to afflicted with, the point is that it's hard enough to live with those without a cold or a flu on top of it.

But it's just the opposite.  Rather than be exempt, we're more prone to becoming ill.  Our immune systems are compromised by the disease itself or from simply being exhausted and in pain.  Our doctors suggest a flu shot each year to help us, our weaker bodies.  Those shots hurt like mad.  The solution used is injected right into muscle and it leaves a bruise to ache for a few days afterwards.

I'm irritated that I have the flu shot every year - not at my Rheumatologist's suggestion but at his actual demand and I'm still sitting in a pile of used kleenex, surrounded by lip balm for chapped lips, chicken noodle soup and cold medications that I cannot take because of high blood pressure or they interact with this or that prescribed medication.  

I'm wishing, hoping and praying for Spring to arrive soon.  I want to open doors and windows and air out every bit of sick in my house.  Until then, the Ellen clip makes me laugh and feel a little better.

The Stronger Cancer Video

I came upon this video on my Facebook.  As I watched it, I had a few different thoughts:

This is so inspiring.  If this woman who has cancer can keep that great big smile on her face, dance around, be lighthearted and even sassy as she thumbs her nose at a killer disease, certainly I can fight fibromyalgia. 

The video made me smile for her but it also made me feel as if I don't do enough to fight, to keep pushing and live the best life I can.  

My Rheumatologist has said that fibromyalgia is very similar to cancer in many ways.  How life altering it is, how many areas of the body it can or will affect.  That it is progressive.  The terrible pain.  Having to take a lot of medications to control symptoms.  

But he said where it differs is that fibromyalgia isn't fatal.  You just wish it would be at times.  With cancer, the patient has two possible outcomes - 1.  A cure.  2.  Death.  Fibromyalgia has neither.  Our only possible outcome is to suffer the rest of our lives.  That sucks pretty bad.  It's why suicide is the number one killer of people with fibromyalgia.  

I'm sure there are cancer patients out there that will die of the disease who would trade places with me in a second just to keep living.  When I feel the worst, I hold tight to that reality.  No matter how bad this disease is, I want to live.  

As I watched the video again, I thought about the ways that I do fight fibromyalgia:

The times that I turn on some Elvis or Eminem, maybe some Beyonce or Alabama Shakes and dance around my house.  Or.. just sit in my desk chair, fingers snapping, head swaying, butt shaking while I sing along.  

I thought about how I make myself get out of bed every morning, no matter how stiff my body is, how much it hurts.  I want to stay in that warm cocoon and drift off again but I don't. 

Doing at least a couple chores around the house each day.  Maybe it's only making my bed - which I never, ever fail to do because it's important to me to accomplish that.  Or doing a load of laundry, cooking a simple meal.  They are small things but they matter. 

Having quality time with my loved ones.  It may be a phone conversation or sitting around the living room talking or watching a movie.  It could be laying on the floor with my grandchildren and playing blocks or reading them a story.  Yes, getting down to the floor and back up is extremely difficult but I manage it.  At least for now.  Chatting with Tony at night and sharing our somethings, year after year.

Laughing as often as I can and learning something new each day.

All of us fight our illness in whatever way we can.  Some days it's easier to do that than others.  There are times when we need to stop pushing quite so hard and rest more.  That balance is harder to navigate than I ever imagined.  

Over all, the video left me feeling inspired.  I realized that each and every one of us have our war and all we can do is take it a battle at a time.  We will win some and lose some.  The most important thing is not being ashamed to lose and to keep getting back up for the next time.  And.. not to compare our journey with others. 
 

Morgan Freeman Has Fibromyalgia

I was perusing the blogs that I subscribe to and found something very interesting over on "This Is My Fibro".  Morgan Freeman has fibromyalgia.  To me and I would think to all Fibromites, this is news.  We have precious few big names and faces to put with our disease.  Why does that matter?  Because it gives fibromyalgia the credibility it has lacked for so long.  It gives us, the people who suffer with it, credibility.  

We, as a society, look up to our movie stars and celebrities.  Though I'm sure none of us would wish this upon anyone, when we find out that they can be afflicted just as we are, we somehow feel more normal.  We feel a kinship of a sort with them.  

Beyond that, we hope someone that much in the public eye will raise awareness of the disease, that they will garner money for research.  It gives us hope.. and hope is precious, it is hard to come by when you live with a chronic, debilitating disease.  

Please check out "This Is My Fibro" post at: Morgan Freeman Has Fibromyalgia

The whole interview with Morgan where he mentions fibromyalgia can be found here: Morgan Freeman - Esquire Interview

Testimony by faroutback - MDJunction Member

**A woman that belongs to the same fibromyalgia forum that I do on MDJunctions was nice enough to send me something she wrote for medical professionals where she lives.  I think she did an incredible job putting into words just some of the things we go through as people with fibromyalgia.  It's my honor to include it here.  Thank you again, faroutback!**

I've had fibromyalgia for 22 years.

The first challenge was getting a diagnosis; there were doctors that diagnosed me with depression, type A personality, and anything else except fibromyalgi.

After a long search, I have a competent, meticulous rheumatologist who is up on the latest about this condition. He is a doctor who supports my exercise routine and encourages me to do more when I am able. In every sense, I am medically well-cared-for, I can pay for good hospitals, medication, and doctors, I have a profession I love, activities I adore, and a couple of friends who are like my sisters (one of which also had fibromyalgia). My family understands my condition and my husband supports me in everything. Within the context of chronic illness, no one could have more support than I do.

But if we talk about quality of life, what I experience every day, and what others see, it is another matter.

Every day I get up not knowing if I can go out to walk or jog, or not. I know that if I don't do it in the morning, I won't do it at all even though it is medically necessary. I only function in the mornings; after 3 or 4 in the afternoon, fatigue defeats me. At seven or so at night I fall asleep wherever I am. But if I don't manage to do some kind of exercise, I feel guilty. I console myself with food, a completely self-destructive behavior.

The stress of having fibromyalgia makes me vulnerable to depression evary day. It's a process of attrition, of wearing down, that over the years finds no remedy in family pleasure because I'm too tired to look forward happily to events such as birthdays or Christmas, but rather with horror since I think of the deadly tiredness I will wind up with. I can't stay up late or have more than a single glass of wine. Plane trips kill me because I can't spend more than a couple of hours without moving around; my whole body begins to feel as if it were on fire.

After a spell of doing exercise, something always interrupts the program: a migraine, an exhausting digestive upset, a climate change that activates every pain in my body. I know beforehand that nothing lasts, neither the good days nor the bad, but as time goes by, the bad days begin to increase in number.

I can't concentrate on reading matter, nor think methodically, because the fatigue isn't just physical. It invades my mind, my desires, my hopes, the projects I know are just dreams that can't come true. Out of respect for the people who seek me out professionally, I am retiring except for time-limited activities--workshops, talks, courses.

Guilt lies beneath everything: I am not the grandmother I want to be, the wife I once was, the mother my children deserve. And that guilt that comes from the absolute necessity of saying "no" to so many choices in life--that it is necessary doesn't diminish the guilt. Women are brought up to serve, to put others first, and though we have been able to get rid of many of these behaviors, crumbs of guilt remain.

What I do now must be at home, not involve driving too far or being in places where I can't rest. I have dizziness, nausea, pain, indigestion, and a deadly exhaustion. And I am one of the people with fewer symptoms of fibromyalgia, others are in infinitely worse shape than I am. It has gotten to the point where I notice immediately if I feel good--the absence of symptoms is wildly noticeable because it is so infrequent.

A doctor told me one time that if I hadn't said I have fibromyalgia, he wouldn't know it because I seem so well. That remark represents the difference between a medical outlook and mine when it comes to quality of life. It has become so diminished that I am not the person I used to be, and I will never be that person again. I have wanted to go live alone in an apartment just to be able to stay in bed all day without affecting anyone else by doing it. I feel like I can't live with people or alone either. Only responsability and self-esteem kick me out of bed and push me to do something worthwhile, no matter how minor or insignificant--making up a bed, trying a new recipe, starting a spring garden.

I live always with the fear that some day will come when that won't be enough to get me to participate in life.

How Much Time?

On the forums that I subscribe to, there was a post recently asking us to answer how much time we put into the following. These were my replies:

Thinking About What Do About The Condition - I put thought into how to live a better life with this. What can I still do with my loved ones that won't hurt as much or put me into a flare. I don't think about how to 'fix' myself physically very much. I know that it is.. what it is. I try to do some stretches in bed, keep motivated and make myself get up every day.

Reading About It - I read any new research that I come across. I read a lot here, what other people are trying or going through. That is a double edged sword though. While reading here educates me more than I can convey, it also depresses me at times. To see so much hurt and suffering on every level is hard. To read the stories from the young people who are newly diagnosed is just so sad to me.

Talking About It - I talk about it with Tony. He's the only one that I really share every moment of my journey with. Talking about being ill can be difficult for so many reasons and it's also tiring. Not great when I'm already worn out. If I'm going to take the time and use the energy to communicate my illness, it has to be with someone who is going to listen and really hear me. He does.

Doing Research - If I get a new diagnosis, I research like a mad woman. I researched fibro like crazy as well, when I was diagnosed. I -need- to be my own best advocate and I don't know a better way to do that than to educate myself. Now though, I have a solid grip on current illnesses and unless something new comes up, I don't research because mostly, it's more of the same.

Being On Support Forums - I do check in here daily. There's always a new thought or feeling from the folks here. Or, even if it's an old thought, something that has come up many times before, I still want to see how everyone is doing and try to reach out, if I can. All of that said, there are times where I have to step back from here because of what I said earlier - It makes me sad to see the suffering, I get depressed so I need to take some time to get past that.

Looking For Anything That Will Help - There is nothing that will help. That is only my opinion though. I medicate to take the edge off the pain but it doesn't make me pain free. I stretch to try and work the worst of the kinks out but the ache is still there. I sleep (when the insomnia allows it) and that gives me a little more energy to do things when I wake up. I make myself get out of bed each and every day because my greatest fear is that if I allow myself to stay in bed all day just one time, the next time will be easier and the time after that will be easier yet. I fear that downward spiral into being bed-ridden. I cannot allow that to become my life so the best thing I do for myself is get out of bed and make myself -live-.

The Anatomy of A Flare

What does a flare feel like?

I can feel it coming. If I used a car analogy for how it builds by increments, it would be this: The beginning of the flare is the car idling in neutral, the accelerator being pressed down slowly, steadily. Just a little bit, enough to hear the motor rev. Then a little bit more, the RPMs climbing, that needle on the dash jerking. Then another press of the accelerator and the needle slams over into the red zone, pegged and jittering, threatening to blow the motor as it whines, roars and vibrates the ground beneath of it.

You are along for a ride that took just a short time to go from idle to insane speed down blacktop, and all you can do is hold on and pray for the medicine to work quickly. You hope the medication dulls the edges of an agony that feels like an ocean's worth of waves rolling over you, pulling you under even as you struggle to swim back to the surface.

I can explain a flare by sensation. For me, it begins with tension. Muscles stiffening, coiling into tight balls. It is throbbing, pulsing along with the beat of my heart in any area of the body being afflicted in that moment. It is the deepest ache, like having a flu in my muscle tissue and bones. It is stabbing pain - like a screwdriver being driven and turned into my hips, an ankle, shoulder blades.

It is the burning pain of a broken bone. If you have ever broken a bone, you know what I'm talking about. It burns hot, like your bone is on fire from the inside out. It is muscles feeling as if they are tangled in knots as they spasm. It is the slightest pressure being put on the body feeling like a full on punch that leaves a purple bruise.

It can be any one of those or a combination of many, all at once and all over your body. Torturing you with a barrage of sensation until you want to crawl out of your own body, hide in a corner and watch it writhe out its pain. You would like to wait until the flare is over before resuming your own skin to live with the 'normal' pain of your every day life.

I can explain a flare by mentality - a conversation you have in your head: I'm laughing hysterically because it's ridiculous that any living thing can bear this level of agony. The little cry face on the pain chart? That does not pertain to this. When I am done laughing like a lunatic because the agony has pushed me over into Crazyville, I will not cry. I will curl into a fetal position on my bed, rock and bawl my eyes out.

I can explain a flare by emotions. It is feeling pain so deeply that you view your body as the enemy attacking your spirit. You sometimes hate the vessel that you live within. It is a profound sorrow because you are never more aware of how debilitating a chronic pain illness is than when it is in a flare. It is anger - a devouring rage that you can live like this and have others not believe Fibromyalgia is real or that you could be faking something so horrifically life changing. It is fear, not knowing when the flare will calm down, fade back so that you can take deep breaths again.

A flare changes who you are in that time. You want to lash out, beat your fists on something. You want to become a child again and have a temper tantrum. The pain is so overwhelming that something very instinctive within you needs to release it however you can. Like maybe if you have that tantrum, scream and rage - some of the physical pain will transfer to them and you won't have so much to carry on your own.

You become intolerant. Your brain, your body are so overcome with agony that anything beyond that feels like sensory overload. Music, voices, light, smells. All of it becomes too much to bear when you are in a flare. The only thing you can focus on, are allowed to focus on is the misery crawling into every crevice of your body, digging its claws in to take hold.

You know, even when tortured, that to snap at those you love is wrong. They do not deserve it. They should not have to share your burden by becoming the punching bag you flail yourself against. And you know, realistically, that you really do not get to transfer physical pain by doing any of those things. It's just that you are in a very dark place, being controlled by pain and it is every breathing thing's nature to fight or to flee.

You know that you cannot flee. You do not get to leave your body and come back later, at a better time. So you fight what your body is doing, what your mind is thinking, what your spirit is feeling until you are exhausted. And that is the final explanation of a Fibromyalgia or chronic pain flare.

It is exhausting on a level that defies words to describe it. Living through pain that is so powerful it sucks the breath out of you, makes you weak. Crawling, dragging yourself across the floor on your elbows towards a bed seems like too much work. Maybe the medication has finally taken hold and dumbed down the agony, left you staring at a blank wall, swaying in a chair, counting each slow blink of your lashes.

And you are grateful. You're finally tired. You're finally in a place where you don't want to claw your own skin off, rip your hair out and beg for mercy. You are no longer spasming, vibrating with hurt. You can finally sleep - sink into the abyss of darkness and pray that the lightning bolt pain of what they call a flare does not wake you, demanding a round two before you have time to rest.

One Sheep, Two Sheep, Hey Macarena

I was recently talking with Tony about how sleep affects Fibromyalgia. Specifically, lack of sleep. I thought I might make a post of it to see if anyone else feels the same way.

If I don't get enough time to sleep off the medications and recuperate from the prior day's pain, I wake up with severe med-fog that I have to fight through for the first hour or two that I'm awake. I can feel my body communicating with me, saying - "Well, you're going to have a bad day right from the start because you didn't get enough sleep last night."

What sleep does for me is bury the pain. No, it's never gone completely. I wake up in pain. But, the sleep buries it under layers. The more sleep I get, the deeper the pain is buried. It doesn't have those sharp edges, it's not as horrible. It's down there lurking though. As each hour goes by, another layer is gone and the pain gets closer to the surface.

It's like.. fingers coming out of that deep place where it was buried, extending to the surface, catching hold to pull itself up and out and then it just sits there, crouching, watching me and waiting. I sometimes imagine the pain stretching, yawning, waking up. It begins building and getting stronger as the day goes by. More fierce and violent. And as the pain does that, my body gets weaker.

My body cowers before the pain, it trembles and tries to hide, shut down. Sleep put the pain under those layers and now my body wants to go to that place to save itself. I become more and more exhausted as the day wears on, just from suffering.

If I do not get enough sleep to bury the pain under those layers, it needs less time to find the surface and take over. And then I have a bad day, all day. I'm not in control at all, it is.

*As a sidenote, Tony said I should write horror stories because it sounded like one.

*The picture above was taken from a very good article on a similar subject: http://www.prohealth.com/fibromyalgia/library/showArticle.cfm?libid=17249

Fibro-Forgets

I decided to make a list of things that I forget due to the fibro-fog, in my opinion. Feel free to leave a comment mentioning your forgets!

1. I forget to shut off the stove & oven.

2. I forget where I am while driving. My daughter will gently tell me that I have taken a wrong turn. It's a route that I have taken a thousand times before.

3. I walk into Wal-Mart and stand there, probably obstructing the flow of people-traffic as I try to remember what I came in to buy. I know I just needed a couple things but not only can't I remember what they were, I cannot remember where stuff is at in the store.

4. I take a shower, wash my hair and forget to rinse out the cream rinse. I get out of the shower, brush my hair and feel it still in there so have to get back in to rinse it out.

5. I wash my hair in the shower but forget if I did it or not so end up doing it all over again, just to be sure.

6. I put deoderant on after the shower and cannot recall a few minutes later if I did it so I go back to the bathroom and put more on. Better to be safe than stinky.

7. I forget if I brushed my teeth or not. A quick rub of my tongue over teeth answers that question.

8. I make a glass of ice water or sweet tea and almost always leave it sitting on the counter when I walk out of the kitchen.

9. I forget if I paid a bill or not and get rudely reminded that I did -not- when I get a cut off notice in the mail.

10. I take my medications and within ten minutes, have to check the pill container, thinking I didn't take them yet.

11. I forget what day it is all of the time. Because of that, I forget and miss appointments and events.

12. I go to the store and realize in the check out line (usually with a cart full of stuff) that I forgot my purse and have no way of paying for anything.

13. I forget that I am in my pajamas when I head out the door to run an errand because I live in pajamas.

14. I forget what I was saying in the middle of a conversation. I have to stop and think about what I was just talking about, find my train of thought and begin again.

15. I forget words. When I am talking, writing or typing - I forget the simplest words. Example: "The other ... Umm, I can't think of the word for dark outside.." Other person: "Night?" Me: "Yes! The other night.."

It Keeps On Keeping On

I do believe Fibromyalgia is progressive in all ways - physically, mentally, emotionally - and this is why:

Some people will say that Fibromyalgia is not progressive because it does not actually harm or degenerate the body organs, bones, muscles or brain. I'm not so sure about that. There have been diseases in the past that were not understood, not even believed to be real. But over time, years and years, with tests, autopsy and medical research, those diseases or syndromes were not only found to be real but also to have done damage to the body and the brain.

There is so little known -factually- about Fibromyalgia at this stage that I believe it could be doing damage to our bodies/brain and quite possibly, science and the medical field have not yet caught up with that.

As I read through the posts on a Fibromyalgia forum that I subscribe to, what astounds me is how similar so many of our stories are. How our Fibromyalgia began, how it manifested itself. So many people say that the first inkling they had that something was wrong was an exhaustion that no amount of sleep helped. Many say that the first body part afflicted was their feet. Many of us say that over time, that pain spread from feet to every area of the body. And the pain became worse. Less good days, more bad ones.

I said to someone I love dearly, after sharing some of the posts from this thread - "If only the medical community, the SSI people, the non-believers of Fibromyalgia would read through some of this - they would have to see that this is very real, that something similar had to happen to all of us, something "broke" in each and every one of us."

When I was diagnosed three years ago, I had a lot of good days and some bad ones. The pain did not last as long on those bad days. The pain was not as excruciating as it is now. I was not so horribly exhausted. My mental faculties were not as scattered.

I have very -literally- been able to feel the progression of Fibromyalgia on every level.

I give kudus and respect to those people who have found ways to deal with Fibromyalgia. Whether that be medication, meditation, exercise, diet changes, alternative medicine, etc. However, I am not one of those people.

I tried Cymbalta, Savella and Lyrica - the big three. The side effects were awful. I quit using them because of it. Fibromyalgia is bad enough without adding those side effects to the life I have to live.

I have tried exercise. No, not boot camp programs or high powered aerobics. No spin classes or Zumba. Jillian Michaels can kiss my ass. But I have tried walking, stretching, low-key exercises. I'm sorry, but there are days, a lot of them, that I'm in so much pain, there is no way I am doing anything but laying in bed and stroking the bottles of pain killers & muscle relaxers while crooning - "My precious."

This is what I know for a fact about my life with Fibromyalgia: I am much sicker than when I was diagnosed. I do not feel well.. ever. Even my good days aren't that great. The pain is all over my body now and nearly constant. My short term memory is worse now. I forget more easily, more frequently. The exhaustion I feel is absolutely debilitating and also almost constant.

This is not a flare. I know what a flare is, I have them. Even as bad as the Fibromyalgia is for me as it has progressed, in a flare.. it gets worse.

I am fortunate because my Rheumatologist also believes that Fibromyalgia is progressive. He uses the term - "full blown" - and tells me that I am, at this point, full blown Fibromyalgia. What he means by that is.. there is a point where Fibromyalgia reaches a plateau, where it becomes extreme on a daily basis and stays that way consistently.

I don't mean for this post to be depressing. But, it is factual from my perspective. Like so many others with this disease, I have refused to give in, to give up.

But, here is further proof of progression: It is far harder to do the most basic things than it once was. I have to pick & choose, each day, what I can do. Cooking, cleaning, laundry, running errands, spending time with loved ones.

There are more days that I cannot do anything at all, as much as I truly want and even need to.

I am no longer in control - Fibromyalgia is, because it has progressed to the point that I have to work within the parameters it gives me every day of my life. I believe that's all any of us can do - accept the limitations, however mild or severe, and work within them.

Anyone that has a difficult time with or can no longer - receive a hug, pick up their child or grandchild, cook the most basic meal or even remember when they last ate, work to contribute to their family, gets lost on the way to the grocery store, or dreads running out of medications - knows that Fibromyalgia is, indeed, horrifically progressive and continues to change their lives every day.

Unsolicited Advice

First of all, please do not blame yourself. Stress and anxiety are a normal part of everyone's life and not everyone gets Fibromyalgia. This is a disease that affects the central nervous system - and while there is more known about it now than ever before, they still have such a long way to go to really nail it down. We do not know for sure that stress/anxiety/illness/injury/surgery/etc. gave this to us. There are some doctors and researchers who no longer believe that to be the cause of Fibromyalgia.

The worst thing you can do at the onset of this and really, for the rest of your life, is to blame yourself for any part of it.

Yes, at this point, Fibromyalgia is a lifelong disease, there is no cure, sadly. I would like to fill you full of hope and good stuff but I believe in honesty. So, I will say this:

You are at the beginning of a very long road. You'll probably try different medications until you find the 'cocktail' that works specifically for you. Some of us are on Lyrica or Savella or Cymbalta - they call those the 'big three' because they are the most used to treat the symptoms of Fibromyalgia. Some of us could not tolerate any of those - the side effects can be rough, but not for everyone. So we might take muscle relaxers, pain pills, sleeping medications, etc.

It truly is trial and error to find which meds work in tandem to help -you-. Never be afraid to return to your doctor and say - "This isn't working for me. Let's try something else."

And that's the next thing I would like to address. Doctors. So many of us have gone through a few until we found one that we felt really listened and would work with us for the long haul. Do not be afraid to communicate every little thing to your physician - every symptom, every pain, every thought, emotion.

Ask questions of them, demand answers from them, do not allow them to brush you off. Nobody knows your body better than you do. You must be your own best advocate. So remember, they work for -you-. They are getting paid to help you. If he or she is not doing that, time to find someone else.

I would suggest looking up the "Five Stages of Grief" and reading a lot about it. Yes, it was written, I believe, for people who are diagnosed with terminal illness or for people who have lost a loved one in any manner - but it addresses what we go through on a mental and emotional level, perfectly.

We get so caught up in the physical side of Fibromyalgia that we often times forget that we also need to take care of our mental and emotional health too. They suffer because of this disease, so very much.

Another great thing to read is: The Spoon Theory.

It explains in the most amazing way, what life is like with a chronic illness.

I said that you are at the beginning of a very long road. I was diagnosed three years ago and I truly did not have a clue how much this would change my life. There are a million small ways that one cannot fathom, that are impacted. But, the deal is this: You also learn how precious life is, how meaningful those small things everyone else takes for granted, really are.

You learn how strong you are. You learn to forgive yourself for not being able to do the things you once did. And you even learn to find new ways to have fun, to have a good quality of life. Maybe instead of going out dancing with your loved one, you go to a movie and cuddle in the back row. Things like that. We learn to adjust, to become a new version of ourselves.

Know that you are going to have good days and bad days for the rest of your life. And know that is it OKAY to have those bad days.

The Cat Has Got My Tongue

Talking about having FM or any chronic illness is hard.  We do not want to put our pride aside and allow others to see what we have become.  We hate pity.  We worry that people will think we're making it all up, that they will get tired of listening to us.  It is scary to think that no matter how much we try to explain what we're going through, nobody will understand.  Especially those closest to us; the people we need most to understand.

Many of us have been taught since we could walk and talk to be strong, self-sufficient, independant.  We have been taught to suffer through the hard times with our chin up, our shoulders back and most of all - silently.  Talk to people about physical, emotional and mental pain?  Absolutely not.  Talk about what hurts us on any level?  Never.  We were taught those things should be handled privately or even ignored.  Don't cry, get back up and brush yourself off, keep putting one foot in front of the other, it will get better.

Life for people who have Fibromyalgia rarely gets better.  We have flares that bring us to our knees and then maybe they go away and we get our little bit of 'normal' time.  We have a good day and in our crazy happiness, we run out and do all of the things we havn't been able to for a long time.  And then.. we pay for it, for a day or a few days afterwards.  It's like our body and mind says to us, "I hope you enjoyed the spring cleaning, the visits with your friends, the walk you took and that big meal you made for your family yesterday because you won't be doing that again for ohhhh.. another few months.  Hahaha.  Gotcha."

But back to communicating what our lives are like with this wretched illness.  Do you ever stand in front of the mirror after a hot shower or bath that you pray will help ease the agony and study your face, your eyes and see Fibromyalgia lurking there?  I do.  I can see it in the hazed color of my eyes.  No longer bright, sparkling and full of life.  The once beautiful golden brown color now reflects drugs and pain.  I can see it in the lines of pain permanently etched around my eyes, mouth, on my brow.  I can see it in the paleness of my skin, the shadows under my eyes.

I wonder if others can see it too and I don't want them to.  So, I stay in the house, I become a recluse to keep from seeing the pity reflected in their eyes.  I know what they are thinking - my friends, extended family.  "She used to be so vibrant, energetic and outgoing.  Look at her now.. she's aged ten years, poor thing." 

I can see them struggling with what to say to me.  They wonder if they should bring it up or not.  How I look, the fact that they havn't seen me in too long.  They are awkward and uncomfortable with me, not wanting to say the wrong thing.  Having Fibromayalgia or other chronic, debilitating illnesses is much like having cancer.  Only you don't die from it.  The communication is often times the same too.  When someone tells you they have cancer, you struggle with a response.  You know that nothing you say is good enough.  I know they feel the same with me, with this illness.

When we are asked, "How are you?", how do we answer that?  Based on how I was raised, to be strong, keep things private, my standard answer is - "I'm fine."  But I'm not fine at all.  I don't know that they can handle the truth because sometimes, it even shocks me.  I don't know that they really want complete honesty because human nature demands that we say or do something to make the other person feel better.  The best they can do is say, "I'm sorry."  The worst they can do is say, "I understand."  No, you really do not unless you have a chronic illness and I'm really glad that you don't, and that you don't understand at all.

We try to hide our illness so that we don't have to face all of that.  We push ourselves mercilessly in an effort to hide it, to be what we were raised to be - worthwhile as judged by society. We push ourselves to be the rock that our family needs us to be. 

It is hardest to communicate our illness with our spouses, parents, siblings, children and grandchildren.  Those we love the most.  We feel as if we are laying a burden on their shoulders.  We feel they have every right to a healthy person to share their lives with and we no longer are.  We do not want to change their lives to fit our needs as a victim of Fibromyalgia.  We have pride with them too - desperately needing to be everything we once were to them.  We fear them getting tired of living with our illness.

As hard as communicating chronic illness and how it affects us on every level - physical, mental, emotional - we must.  Our family and friends, those that love us, deserve to know what is happening through every stage of this.  They cannot understand if we do not talk.  They cannot try to help if they don't know how. 

Whether you want to face it or not, they are seeing the effects on us.  They may be confused.  They worry and they are frightened.  Only we can ease that for them with a lot of discussion.  By explaining things, we ease those concerns and we educate them on how to have a better quality of life with us.  We must get past how we were raised, our pride and reach out to them so they can hold our hand.  We must quit apologizing for ourselves, feeling guilt because it is useless.  This is our life and those that love us.. it is their life now too.  We need them.  And they need us, in any form they can get us.