THE FOG IS ROLLING IN

I haven't been up to writing.

The weather has changed.

I don't know which direction to go.

I guess east is nice.

I went to the painting class last night and I had a great time. I didn't buy anything although I wanted to go back to this place A LOT.  I'm just glad there wasn't anything to buy otherwise I would have come home with a lot of paint and canvas.

Thank goodness for little miracles.

Having said that, it must be the fog or writers block or something. I have drafts started that I just couldn't complete. It's scary when you look up and have to open up the databanks and desperately search for the thought you were trying to process. It's scary when you look at a page of words and wonder if you can comprehend complex sentences ever again. It's scary when you walk into a room and can't remember why you went in there in the first place. 

It's very scary when you arrive at your destination and wonder how you got there. You wonder if the insomnia is shrinking your brain cells. Restorative sleep is hard to get with Fibromyalgia but it's that refreshing rest that helps manage the Fibro fog. I find that it helps to break up tasks or reading into small blocks. That way when the fog envelops your brain you don't give in to the stress of losing it. 

I didn't sleep at all last night. I finally got to sleep at 12:30 and by 2:00 I was up and unable to go back to sleep. I'd shut my eyes but it wasn't happening. It was alpha wave intrusion at it's finest. Finally at 6:00 a.m. I finally closed my eyes and woke up at 9:30.  I hate not being able to sleep. It causes so much more pain during the day.

What is prescribed as behavioral modifications for the treatment of insomnia doesn't seem to me to be particularly helpful to someone with Fibromyalgia. I understand what the intent is but for me it just wouldn't work. Actually, it would make it worse. For example, let's just take no TV, phone or computer while lying in bed. Ok, let me think about this. If I'm in a great deal of pain and I'm in bed that means I have nothing to distract me. All I will do is be in bed and have nothing to think about but the pain. 

Nope, that won't work. 

So, today I'm just going to take it easy and try to remember that "this too shall pass."

As I look outside.......

I see rain clouds.

Well, isn't that just great.

CLOSE MY EYES AND SLEEP

The neurotransmitter Orexin.

This little baby really packs a wallop.

And can put us to sleep.

For the first time in thirty years the FDA is close to approving a drug that can help those with insomnia. People with Fibromyalgia and Chronic Fatigue have many a sleepless night and struggle with the choices that are out there. 

I take opioids and muscle relaxers so the thought of adding a strong sleep aid is something I've always been afraid to take. I have had doctors prescribe Ambien but I've never taken it. I don't want to be on a lot of drugs, fall asleep and never wake up.

Maybe I shouldn't say I'm afraid. I have a healthy respect for drugs. They're powerful and shouldn't be taken lightly. I believe that doctors and pharmaceuticals have ingrained us with the belief that manufactured drugs are an easy fix. Even an antibiotic is powerful and we pop those like candy.  Let me say, I'm not against drugs AT ALL. I just think that we need to be careful and examine what we take. I think we should have one doctor that knows everything we take and can monitor it. I do believe that our personal health care is fragmented. One doctor doesn't know what the other is doing. Wouldn't it be wonderful if we could go to one place and have all the doctors treating our ills??

Anyway, back to the new sleep aid.

Merck has a new sleep drug before the FDA. It's called Suvorexant and it doesn't seem to have the same side effects as the sleep aids that are currently out there such as  Ambien and Lunesta. What they do is act on the neurotransmitter GABA. 

GABA (and glutamate) act to control the levels of excitement in the brain. Basically what this new drug will do is force your brain to go to sleep. Glutamate is an excitotoxin and can cause us to get out of control (brain wise) and GABA steps up to the plate and calms things down. It gives our brains the ability to take a break from our thoughts going at a rapid pace and slow down. If glutamate is the green light.....GABA is a yellow light. 

The new drug is in a class called Dual Orexin Receptor Antagonists or DORAs for short. The neurotransmitter orexin is responsible for wakefulness and appetite among others. Again, that little neurotransmitter promotes wakefulness and Suvorexant targets that baby and works on it and so far it seems safe at lower doses. If you look up Orexin you'll be astonished by this neurotransmitter and what it is involved with in our system. 

Quite simply, this drug blocks orexin.

Side effects?

Sleepiness.

I think I can handle that.

CLOUDY WITH A CHANCE OF PAIN

 The sky is cloudy and overcast.

It's going to rain.

I love it.

My body doesn't.

Does anyone else react to the weather like I do? I laughed at a recent study that concluded weather had no bearing on Fibromyalgia pain.

My fanny it doesn't.

At least I said fanny.

I, like many others, have different levels of pain. I call the worst pain voodoo pain and it progresses to OMG-make it stop. Right now I'm somewhere between the two. I feel like a Steve Miller song. Clowns to the left of me, jokers to the right. 

It's a barometric pressure free for all and I'm stuck right in the middle.

I feel like I'm on a never ending cycle right now. No sleep equals more pain. I take medication for the pain and muscle relaxers for the muscle spasms. I am too afraid to take something to help me sleep. I take an over the counter natural medication called Mid Nites. All they are is valerian and melatonin. It helps a little but it doesn't keep me from waking 2 or three times in the middle of the night. Why my brain won't shut off is beyond me. I can't just shut down and go to sleep. It doesn't matter that my bedroom is dark or that I've taken a hot shower before bed. I've tried all the remedies that say "do this and you'll get a good nights sleep." It doesn't matter at all. Alpha wave intrusion just won't let me reach the deeper levels of sleep and my body desperately needs it. 

I look outside and the clouds are building again. I just opened the door and it's REALLY humid. This tells me I have no chance of getting relief tonight. My body hurts and this puts my attitude in the toilet. 

Way in the toilet.

I'm thinking of life before Fibromyalgia and chronic pain. Big mistake. This brings me to my pity party for one. I feel myself getting frustrated for what could have been. I'm also crying because every single bone in my body aches. 

Right now I just want to curl up with my favorite men.

Who are they you ask??

With a slightly mysterious smile...

I'll bet you'll never guess.

OK.

I'll tell you......

It's............

 My coping mechanism.

4 or 5 of those make a nice snack.

REWIRING THE CIRCUITS

My body is like the computer.

The hard drive isn't functioning.

I've had an interesting time lately. Ever since those fricking epidural shots my body has had a mind of its own. Every coping mechanism that I have used to control the pain hasn't worked. I had become a master of control. I even congratulated myself on that fact.  Even though the pain was ever-present, I had coping mechanisms that I would use to exert some sort of control over my body. Anything and everything would be tried and tested so that the days spent curled up in a fetal position would be minimized. I know that I would always have a level of pain but I thought I could control the levels. Control has always, always been my issue.

And I don't like being out of control.

Stupid me.

I haven't been sleeping real well. I mean, I do sleep but I am in that awful shadow of sleep. The one where you know you're asleep but it feels like you're awake? I know we have sleep issues but lately they're more pronounced. Why is it that all the articles on sleep fail to miss one important issue? If we lay in the dark and have nothing to distract us from the pain we will not drift off into blissful slumber. Instead, we will lay there in torture until we get up and do something else or have something else to help us pass the time.

Lack of sleep equals more pain and I understand that. Why do we have the alpha waves intruding into whatever possible sleep we might be able to get? Is the issue in sleep; not the actual sleep per say, but the ability for the heart rate to slow and the ability to breathe deeply enough to achieve that REM sleep that we need to replenish and restore our body?

There is an imbalance in the autonomic nervous system. 

The autonomic nervous system controls our unconscious bodily functions such as heart rate, breathing etc. There are two subsets: the sympathetic and parasympathetic. The sympathetic nervous system controls the flight or fight. Our bodies don't respond real well to stress and our cortisol levels are usually in overdrive as well. The parasympathetic system controls the quieter bodily systems such as digestion. So if this holds true, the sympathetic system gets us ready for flight and the parasympathetic gets us ready for rest. One or the other predominate inappropriately at inappropriate times.

We are screwed because neither one works.

We can't stop the flight and we can't rest.

Is it any wonder that we have pain?

So I guess when they find the "off" switch for the flight or fight and the "on" switch for the rest part of our brain we'll be fixed.

If they can flip the right switch.

WALK ONE MORE MILE IN MY SHOES

May 12.

It's Fibromyalgia Awareness Day.

Let's go for a walk.

We're invisible and we wear our cloak of invisibility like a dark shroud around our shoulders. It's distinctively different from the smile that masks a life full of pain. On the one hand we treasure our invisibility because we wouldn't want the outside to look like we do on the inside. On the other hand, we are not to be believed because we just don't look that bad.

To anyone else, that is.

After all, what is pain? 

It's no big deal, really. We are supposed to suck it up and not be such a wuss. Pain equals weakness and weakness is hated. For those of us who were Type A squared, the loss of control that has accompanied this illness has almost been as devastating as the illness itself. To top it all off, we don't know if we'll ever get it back. This illness takes a vital, ambitious and, excuse the language, balls to the wall woman and turns her into something that can't remember why she walked into a room. Everything that used to be precious to her life; her career, her mental acumen, her body and her confidence in herself and her abilities, are now a vague recollection. Even when you can remember all it does is make you cry for the person you used to be.

Can anyone understand that the tears we cry are not only for pain but for the endless frustration that we feel? We have a myriad of symptoms that are dismissed by doctors. Medications are hit and miss and most of them have side effects that are worse than the pain we feel. We've tried anti-depressants and anti-seizure medications. We've tried the opiates. We've tried muscle relaxers. We've tried vitamins, acupuncture and massage. If we complain too much, we're neurotic. If we try to keep it too ourselves, well, we must not really feel that bad.

How do you tell someone that you really miss the life you used to have? A life that was pain free and a life that could be lived without worrying about the inevitable crash to come? How do you express your pain in a way that's not dismissive and not pitied, but believed? How do convey the fact that you're not wallowing in your pain but that it is your reality and you're really doing the best you can to live with it?

How do we ourselves understand the new crop of symptoms that seem to appear daily? For some it's sensitivity to smells, noise or chemicals. For others it might be a mysterious ache or pain that suddenly appears in a different part of our body. How do we know what is going on in our bodies? We can't have a doctor on speed dial and we fear looking foolish, even to ourselves. Our body seems to be betraying us and we just can't seem to get a handle on it. We feel overwhelmed and then feel stupid because what we used to handle would cause most people to burn out quickly.

We feel isolated even around our dearest friends and family. Chronic pain loves to play with our  emotions and it plays us like the virtuoso that it is. We doubt our bodies and ourselves. The confidence that we had with life is now diminished so that we don't even recognize the person we've become. Sometimes even we believe the bad press;  think we are whiners and if we'd just get up and move around we'd feel better. 

Our brains are in a constant state of fog. The overpowering fatigue and pain. Imagine living with the worst flu you've ever had and then imagine that it NEVER goes away. Year, after year, after year. How do you think you'd feel given that life sentence? Yes, there are good days but good days mean the edge is off the pain and fatigue. It never really goes away. Your body has limitations and we've learned to listen.


When will researchers try to figure out why the switch was flipped?  I feel that this is a neurological disorder. Where others feel a touch, we feel pain. There is too much Substance P (this heightens the awareness to pain) in our spinal fluid. We have abnormally high levels of glutamate (and excitatory neurotransmitter) which means our neurotransmitters are on overdrive. Our internal amplifier is turned up full blast.  In other words, THERE IS SOMETHING WRONG.

Let's also not forget the sleep disorder that is also one of the lovely symptoms of Fibromyalgia. Alpha wave intrusion. The nice, sweet sounding term for our "awake" brain waves that keep saying hello to us in the middle of the night so that deep, restorative sleep is an impossibility. The fatigue we experience is overpowering, however, we cannot find the sleep that our body so desperately needs. Our brains will not allow it.


There are lists and lists of symptoms. There are the intestinal woes, thyroid and other hormonal issues. Even I look at the list and think it's no wonder people think we're crazy. I haven't even touched on the emotional issues that are inevitable when you live with chronic pain. 

It's so difficult to find the acceptance we crave. On one hand we do accept our physical and emotional limitations but one the other we keep fighting. We are the wounded warriors that want to fight the good fight until this illness is defeated. 

But sometimes we can't.


Sometimes it just hurts too much.


And sometimes we're just too, too tired.

EYES WIDE OPEN

I have been so very tired.

It's almost impossible to keep my eyes open.

Except now.

I'll probably be up all night.

I had never heard of the condition called alpha wave intrusion. I knew a little about brain waves, mostly in connection with biofeedback and meditation. I'd never heard about the intrusion part.

One of the problems with Fibromyalgia is that we are often plagued with poor sleep and insomnia. There are different brain waves associated with the different levels of sleep. Alpha waves are associated with an active, awake mind. Deep sleep is associated with delta waves. If and when we do manage to get to the delta level of sleep, people with Fibromyalgia usually have those pesky little alpha waves show up right in the middle of that deep, restorative delta sleep.

It's during those deep levels of sleep that the body, and more specifically, the muscles can repair themselves. I'm guessing that the stiffness of our muscles in the morning really can't be traced back to the sleep problems. Or can it? I don't know because even if I do take a sleep aid I still wake up with severe muscle stiffness. 

Anyway, I've spent the last few days sleeping. Maybe I'm just catching up on sleep but it seems that every time my head hits the pillow I want to sleep. Now, it's not for a great length of time, just a cat nap. 


So now, the dilemma. Do I give in to the extreme exhaustion and sleep or force myself to stay awake and then try not to get so tired that I can't sleep? Every article I read about sleep tells me not to sleep during the day so that I can sleep at night. That would be a great tip except it doesn't work that way for me.


I still don't sleep well no matter what.


Behavioral modification doesn't do much for my sleep. Believe me, I've tried it for more than one day. I wanted to give it a real shot at working. 


It didn't.


First of all, I shouldn't be in bed with my laptop or have the TV on. I tried this. I really did but when the pain is spiking laying in bed in the dark with nothing to distract me is a real recipe for disaster. Distraction by any means possible is a way to get through the pain. It really does help to have something else on which to focus. 


Even if I do wake up and go to sleep at the same time every day it seems to have nothing to do with the amount of sleep I get through the night. Even if I somehow manage to sleep through the night, I still don't have restful, recuperative sleep. Most of the time, no matter what kind of schedule I keep, I am awake most of the night. 


So what do I do?


I do the bath thing.


I do the aromatherapy thing.


I do the sleep mask thing.


I do the melatonin thing.


I just don't do the sleep thing.

DON'T ASK, DON'T TELL (OR FIND OUT)

I learned something today.

Always ask what the cost will be,

BEFORE filling your prescription.

Hey, it's my fault. I freely admit that. All I did was answer a couple of questions. I went to my pain management doctor today and she asked how I was sleeping. I truthfully told her that I can fall asleep quickly but I don't stay asleep. I remain asleep for a couple of hours and then I wake up. I'll stay awake for 45 minutes to an hour and then fall asleep again for a couple of hours. This pattern continues throughout the night.

Chalk it up to the good old alpha wave intrusion.

Anyway, she talked to me about sleep aids. I have to tell you that I'm not crazy about them. All sorts of things go through my head. What if I wake up and don't realize that I've taken medication already and take more? What if I have a bad reaction? Can I take this with the medication I'm currently taking? She convinces me to try it because the lack of sleep isn't good for my body.

Really? The lack of sleep isn't good? Come on, I knew that already.

Okay, so I'm armed with the prescriptions and head off to Costco. I'm really not concerned because Costco is so much cheaper than anywhere else I've ever been. Prescriptions that cost over $60.00 at another pharmacy (which will remain nameless) was $18.00 at Costco. Probably why that nameless pharmacy has stores on almost every corner!!

I'm informed that the prescriptions will be ready in about 30 minutes so I decide to walk around and wait for them. 

Forty-five minutes later, after I wait in line, I find out they still aren't ready. Fortunately, the lady at the counter doesn't make me wait in the line again. She has me wait right beside the counter and about 15 minutes later she calls my name.

I hand her my card and she rings up the prescriptions.

$180.00 just for the sleep aid.

Let me tell you, I don't want to sleep that bad. Can you believe that one? Plus, I had a twenty dollar coupon that the doctor gave me. Stupid me, that should have tipped me off. They don't have a generic form of this particular sleep aid yet so I was stuck paying full price. Let me tell you, next month when I go to the pain management doctor she will be told that I'm not paying for that again. If it doesn't have a generic counterpart - forget it!

What are in these little darlings that cost $6.00 a pill, gold? No wonder the pharmaceutical companies and drugstores are such a lucrative business. Now, I don't have anything against anyone making a profit but that is unreal. This is just to help me sleep? What would it be for a drug that I really needed for something life threatening? How do people pay for medications? This is what gets me on my soapbox. This is the kind of reform that is needed. People should be able to get medication for diseases like cancer that doesn't cost an outrageous amount. My girlfriend had breast cancer and her bills for her prescriptions were almost (get this) $7,000.00 a month!  I mean, come on.......that is a travesty. 

Anyway, next time, I'll ask what it costs before I accept it.

I'm not paying 6 bucks just to go to sleep.

Next time, I'll buy Sominex.

BACK DOWN THE RABBIT HOLE

Every time these flares hit, it gets harder and harder

to recover and bounce back.

This last one has been a doozy.

It starts out as a slight ache in my back. Then it moves to my hands and I notice that I have to rub them more than usual.  I started taking Neurontin this week after I told the doctor how difficult it is to put my feet on the ground in the morning. He looked at me and just said: 

"Nerve pain, you need to take Neurontin." 

"Can I take that with all the other medications that I currently take?"

"No problem, it will probably help you sleep."

Okay, I'm in if it will help me sleep. So far, everything that is supposed to help me sleep works only for a couple of days and then it's back to the same old routine. I fall asleep quickly and stay asleep for a couple of hours. Then I'm awake for a couple of hours. Then I fall asleep again. This goes on until around 5ish. Then I fall asleep until 8. I would just like one night where I sleep through the whole night. I know, I know, I'm a hope freak. What we would all give for a night where we don't have pain and can sleep through the night.

Even as I write this I have to stop because the pain in my hands is over the top tonight. My hands, feet and lower back hurt like hell. Now I've got this pain in my neck and it has a buzzing sound. Great. Just Great.  Just one more symptom that has popped up. I also still get a sound in my ears that sounds like static. Why does it seem like the black holes get deeper with each flare? Why does it seem like it's harder to climb out of them? I understand the depression because living every single, solitary day in pain sucks. They say every cloud has a silver lining. It's impossible for me to see that lovely silver lining. Just when I get close, a huge fog bank rolls in. How in the hell are you supposed to find the silver lining through that? 

Anyway, back to the Neurontin. I tolerate it well and I do fall asleep but with every passing day it works just a little bit less. The only thing I notice is that I feel a little drugged when I wake up in the morning. Gee, maybe I should just stay in bed!  I do get up, though, and go to the gym to walk. I continue to do this because everything I read says that it will help the pain. In my case, the only way it helps the pain is that it makes it worse. A lot worse.  I continue to walk hoping that one day it will help the pain like it's supposed to. I walk very slow and I don't overdo it, but my feet still hurt. I tried the gel insoles. Nope. That doesn't help either.  So, the walking that is supposed to help, makes the pain in my feet and the rest of my body worse. When will it help reduce the pain, can you tell me??  I've got wonderful gym clothes just for the occasion and the cutest little pedometer you've ever seen!  Just don't ask me how many steps I've taken because that would be really embarrassing! 

I know that "the group" has had a miserable summer. Everyone is either in one hell of a flare, just got out of one or just started one. Depression is running rampant because this fricking pain just doesn't stop! I know that this summer has been awful for me. What am I talking about? This whole year has been awful!  Is the rest of my life going to be like this?

I'm watching Titanic and it's almost over. That's how long it's taken me to get through this post. I've had to stop because it just hurts too much to write. Maybe I should have stopped earlier but I'm tired of not posting because of the pain. It hurts too much to write but it hurts too much not to write. I just hope this makes sense. I tried reading it back but I can't even follow my own words. 

I'm tired. 

Not sleepy tired but just thoroughly exhausted.

Bone tired.

Now I need to go check on a couple of people that I haven't heard from in awhile. 

We all keep tabs on each other because it's real easy to go into hiding. 

I've been there once or twice myself.

I can feel it.

I'm going back.

Back down the rabbit hole.

Did any of this make sense???

IT DIDN'T WORK LAST NIGHT

After all of the great ideas

of the previous post,

as of 5 o'clock this morning,

I was still awake.

I guess that proves a point,

that no matter what we think

or 

what we say works,

when it comes to Fibromyalgia

All bets are off.

THE NEST

The nest.

It protects and it nurtures.

It shields and it comforts.

I went to the support group luncheon today. There were only a few women there and, at first, I was a little disappointed that more people didn't show up. 

It turned out to be a blessing.

We opened up to each other and told our stories. We offered simple remedies that worked for us for sleep or pain. We could agree to disagree about medications. 

What a wonderful afternoon. We really got to spend some quality time together and got to know each other. Then we started talking about our beds and a lovely woman named Marianne gave it the definitive name.

The nest.

So today I'll write about my nest. I'm big on white sheets. I think it's yummy to get into cool, crisp white sheets. Also, because I don't sleep real well, I use aromatherapy. Lavender is great for sleep and I spray that on the pillow cases. 

I could really relate to the term "the nest" because I'm also big on pillows.

And I've got a really big pillow. 

Meet the Comfort-U pillow. It was designed by a nurse who also has Fibromyalgia. I stumbled on this a few years back and I truly cannot live without this pillow. It's a big horseshoe of a pillow that can be twisted and turned any way possible so that there is no pressure on your body. I LOVE this thing. It is kind of expensive but it has been well worth it!

The last part of this little ritual is my natural sleep aid. It's called Mid Nites and I get them at Walgreen's. They are completely natural and they do help me relax and sleep. I hesitate to take prescription sleep aids because I take medications for pain and muscle spasms. I don't like combining too many medications because I don't know how they will react and interact with each other.

So here I am surrounded by pillows and the sweet smell of lavender. I wish I could say that I'm off to dreamland but, alas, this is not the case. So on the top of those sweet smelling sheets and pillows is my laptop. I also have my television that stays on pretty much all night. I know that doctors would tell me that would not be conducive to a good nights sleep but their ideas don't work for me.

I've tried them.

Now, I like the bath idea to get relaxed. As far as I'm concerned, everything goes better with water! What doctors prescribe as behavioral modifications that will help treat insomnia just doesn't seem particularly helpful. I really do understand the intent but, for me, it doesn't really help me sleep. Actually, it makes it much worse. If I'm in pain and I'm lying in bed with no TV, phone or computer I would be a basket case and sleep would be pipe dream. What that means is that I'd have absolutely nothing to distract me. What I would be doing is lying in bed thinking about the pain.

I think that we all have different ideas and remedies that help us make it through the night. It's nice to hear what works for others because in the end all we have is each other. The medical community can prescribe pills but sometimes we need something else. 

We need comfort that isn't pharmacological.

We need support and we need each other.

AWAKE AWAKE AWAKE

I mentioned a soapbox in the last post.

I got on one.

I got down.

Stupid me.

I just couldn't keep my mouth shut.

I started looking at the different kind of pills out there for Fibromyalgia. When I got to the sleep inducers I casually mentioned that I didn't want to take them. Right now I wish I had one. It's 4:30 and I'm awake.

Why am I awake? The tooth that the dentist worked on again today is throbbing. It was Day 2 of the root canal. Oh joy. So I just took another pain pill and I hope it works. 

Also, I worked on the last post until 2 and now its 4:30. If that tells me anything this is going to be a very pissy day. I should have just shut down when I first started to get tired but, no, I wanted to keep reading about treatments.

I think I'm going to put on a movie and scowl.

I'M IN DISGUISE

"We are so accustomed to disguising ourselves that in the end we become disguised to ourselves."

Francois de la Rochefaucauld

What a quote!

This quote was on another Fibro sufferers blog. It spoke to me so much that I knew I'd have to discuss it. Maybe it spoke to me because I've been Type A squared since birth. Maybe it spoke to me because I've been in sales with home builders for many years. Maybe it spoke to me because as a by-product of new home sales, I've been a chameleon for so long that I don't even recognize myself anymore. Maybe.......maybe.........maybe.

Maybe, just maybe, it spoke to me because of the pain.

It's so true that we disguise ourselves. Whether we have a chronic illness or not we usually never tell the truth when someone asks how we are. I mean, who really answers the question when someone asks how you are? It's really bad when you have chronic pain.

"How are you doing today?"

Not good.

I feel like crapola.

All I want to do is sleep.

This sucks.

My life is falling apart.

I'm in huge, big time, pain.

My hands hurt.

My head hurts.

My back hurts.

I'm not sleeping real well.

My whole body hurts.

Every bone in my body hurts.

I ache.

I'm tired.

This disease is destroying my life.

I feel horrible.

I can't seem to get out of bed.

I can't concentrate real well today.

What did you say?

After a while no one wants to hear it anymore.

Let me clue you in on a little fact.

After a while we don't want to say it anymore either.

So we say:

I'm okay.

Or we fake a smile.

I'm just a little tired.

Or we fake a smile.

It could be worse.

Or we fake a smile.

Today's not a real good day.

Or we fake a smile.

Or we burst into tears.

And we still try to fake a smile.

Or better yet....we just don't say anything.

We sugarcoat it.

Anyway, we disguise how we feel. We disguise the pain that we feel. We disguise the guilt that we feel. We disguise the depression. We disguise the lack of sleep. We disguise the embarrassment over feeling sick yet again. We disguise the forgetfulness. We disguise everything.

Is it any wonder that we don't know who we are anymore? Let me see, I want a ticket to La-La land and I want to take up permanent residency there. I'm also incognito. What else?? Is it really so hard to believe that someone can feel so unbelievably awful all the time? Maybe that is why this disease is so misunderstood. I think it might possibly help for people to understand how we feel if they can relate to the worst possible flu that they've ever had. The flu that made every bone in their bodies ache with an intensity that was staggering. The kind of flu that made it impossible for them to leave their bed for a few days. Now try having that same feeling not for a day, or a week or a month but have that feeling year after year after year. Do you think they'd understand Fibromyalgia then? How about those doctors that think this is all in our heads? Let's take that old baseball bat and beat the crap out of them and continue to beat them every day for a few years. Do you think they'd think we were crazy then? Do you think people would finally get it?

Can you tell I'm on my soapbox? Can you tell I'm just the slightest bit pissy in the attitude department? Well, this is what happens when I can't sleep and the pain index is off the charts. Just as an FYI, the humidity is still high and I still hurt.

I hurt a lot.

It's the voodoo kind of pain and it hasn't gone away. I know it will be another long night and I'm chugging pain medication like there is no tomorrow. The lovely storm front is still hanging around. The temperatures have gone from the mid 80's to the low 50's and it doesn't look like it will change for the next couple of days. 

I'd like to say my favorite word but  this is a G-rated blog.

I'm just sayin......................................