OUR HALLOWEEN MASKS

Masks. 

Halloween.

Chronic Pain.

The perfect trifecta.

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.

All I want to do is sleep.

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.

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 mask 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.

It's funny how Halloween brings to mind the nature of chronic illness because we wear masks almost daily. 

We have to stop and take off the masks.

Because.

We don't want to be a mask.

A mask with a beating heart.

STOP, DROP AND PUT IT IN NEUTRAL

It's been well documented that our physical and emotional wellness intersect. We need management tips and we need them bad because, let's face it, there are days that everything is just overwhelming. Everything we read tells us to sleep and get rid of the stress in our lives. What happens when we just can't seem to do that? 

The one thing we don't want to hear is the rest, move and sleep platitudes. Like I said, very good things but those words tend to really irritate us especially when we are really hurting. We would do those things if we could. Don't compound the situation by telling us what we already know. 

So?

Stress makes us crazy. That old pesky fight or flight light that goes off and sends cortisol running through our body.  I remember the feeling. My muscles would tighten and my heart would beat faster. It seems like your senses are sharper. I thought I would thrive in that environment and I loved it. However...... If chronic stress can rewire the brain then I must be really screwed up. The body needs to shut off the switch and therein lies the problem. The stress felt so normal for so long that it tends to give you a warm, fuzzy feeling but the price that you pay for that over-achieving, perfectionist, familiar feeling is a very heavy toll on your system. 

You put a bulls-eye on your back.

Put the effects of stress together with a central nervous system dysfunction that is found in Fibromyalgia and you have a recipe for disaster. We have to find a way to breathe through the stress. Do whatever it takes because we have to. Try yoga, aromatherapy, acupuncture, massage, biofeedback.....anything.....going outdoors and looking at the sky......whatever it takes to relax.

If there is a great deal of stress that is overwhelming you the best thing you can do for yourself is to take some time for you. I find that a bath is a real lifesaver in those situations. I'm one of those people that thinks a bath helps everything. Feel icky? Get in the tub. Stuffy nose? Get in the tub. Stressed? You got it......

Having said that, removing yourself from your mind isn't easy. The wheels keep turning. There has to be some way that you can shut the door and stop. Even if it's just for a few moments. Put on your headphones and listen to some of your favorite songs. Place your head on the pillow and shut your eyes. Go to the beach or to the place where you felt warm and safe and stay there for a little while. Sit outdoors and look up at the sky and just "put it in neutral."

I love that  saying.

Our support group is focused on emotional wellness this month. I really needed to hear it this month. I'm in one of "those places." What was said was so simple but it was brilliant. It was something we all can relate to and know exactly what it means.

Put it in neutral.

When you feel yourself caving and life seems stressful take that gearshift and place the car in neutral. I was amazed at how simple, effective and how much it helped. 

That's all we need to say to ourselves.

Stop.

Drop.

And put it in neutral.

As an added FYI Judith Westerfield posted about "I'm safe" on her website. Read this as well. It truly helps!!!  

THE CDC AND THE THREE STOOGES COMPARISON

OK.

I know the memes are out there.

But......

They just had one job.

One.

As far as I'm concerned; they blew it. I usually don't write political criticisms but this one I just couldn't pass up. For the record, I'm pretty independent. On social issues I lean more toward the left. On fiscal issues I'm definitely more toward the right.

Having said that.

There is no right or left where public health is concerned. 

These poor nurses put their lives on the line to care for Mr. Duncan. I don't care what he knew or when. That's a policy issue that I'm not writing about at this time. From what I've read it was a total circle jerk in that hospital. First, let's blame the overworked ER doctor that obviously didn't read the CDC bulletin hidden somewhere in a break room that he used to catch an hours worth of sleep. 

Then to hear the CDC blame poor Nurse 1 and Nurse 2. For once I had to appreciate the congressional hearings. They made them sound like Dr. Seuss' Thing one and Thing two. The senator from Missouri was right.

Let's show them a little respect. Who knows what kind of chaos reigned in that hospital. If the media is to be believed it sounded terrible. Hazardous waste littered all over the place? Sending blood samples through the pneumatic tube? 

I have some questions.

With the type of infectious agent that Ebola seems to be why wasn't that apartment stripped of all hazardous material immediately. Why was the vomit scrubbed days later? Why wasn't he isolated at the mere mention of Ebola for the sake of caution? Ms. Pham and Dr. Wendy Chung were at his bedside about three hours before the tests confirmed Ebola. Now, as much as I admire her being on the front lines, that was ludicrous. Why was food delivered to the apartment by someone not even wearing a mask?

Then, watching the congressional hearings, my mouth just dropped open. My mind is just spinning. Speaking of spinning, that's what I watched. You tell me that the CDC can effectively monitor these people that come into the country from affected regions. Again, I'm not in panic mode but they can't do the one job they had right and you tell me they can keep this under control? He couldn't even say for certain that Ms. Vinson was told she could fly. All I heard was a prepared statement being read that sounded like legal was standing over their shoulder prompting them what to say.

Again, who's on first?

Yes, hospitals are under state control but a health crisis such as Ebola demands certain practices. One of them should have been that people from the CDC should have gotten off their ass and been at the hospital to make sure they were equipped with proper protective gear and shown how to properly disrobe from that gear so that they couldn't be exposed to any contaminant.

Is it any wonder that the public has no faith in what they're telling us? I'm not seeing Ebola around every corner but, at least, tell us the truth. I hate bureaucratic spin. Let's blame everyone else. It was their fault. They did something wrong. If that was the case....where the hell were they? Issuing emails and faxes??? Cmon.......

I hate cover your ass protocol.

And that's what I saw at the hearings.

God Bless Ms. Pham and Ms. Vinson.

That's all I can say.

I just pray that no one else gets caught up in this storm.

But, I doubt it.

I think more will come.

500 POSTS AND COUNTING

500.

I can't believe it.

Thank you.

When I first started blogging it was mainly for me. It was a way to find out what was going on in my body and also as kind of a journal. Writing has always been therapeutic for me so when I got diagnosed with Fibromyalgia I wanted to know as much as I could and keep track of what I learned. Little did I know what "I really do miss myself" and subsequently, "Seeking Equilibrium" would turn out to be. It's a place where I would "meet" some of the most wonderful friends I've had the privilege to have in my life.

Isn't it wild to have friends you've never met face to face?

And yet they are.

I've met CDT's (canine dog therapists) and their humans. I've met wonderful people in New York, North Carolina and Washington State. I've met wonderful people in Canada and England! We've never met face to face but I can assure you that we've met heart to heart. We have different backgrounds but a shared common purpose. We have different challenges that we've faced before in our lives but we have the same challenges that we continue to face. We have different life experiences but we have the same desire to go back to the life we once knew.

I've learned that we are not alone in this fight. 

I have found so many joys in blogging. Not only have I been able to open myself up and write about experiences that are either depressing or embarrassing but I've also been able to open up and ask for help. That, for me, is huge. I enjoy looking for new comments because feedback is wonderful.

You know what's funny? 

You start something for you and then someone comments. 

Then they follow you. 

All of a sudden you realize it hasn't been for you all along. 

What a blessing.

Onward...........''

THE POSTER CHILDREN FOR PAIN

A Medscape Article.

It was long.

But I read it to the end.

And this is what I found!

On September 17, 2014 Medscape published an interview with Dr. Daniel Clauw and Dr. Phillip Mease. The article was long and usually I just skim over because my attention span just hasn't been above the gnat stage lately. I ended up reading it to the end and there were some interesting gems in there. 

And then on page four Dr Clauw mentions a free Fibro Guide.

It is truly worth it to check it out. 

Did you know that they feel that we are the poster children for a centralized pain state? I have to say these doctors are very knowledgable and balanced. They recognize the need for a medical and non-medical approach to managing the symptoms of Fibromyalgia. 

They also mention that any therapy will not alleviate symptoms entirely. 

I encourage you to read the article and I'm putting the link at the bottom. 

The Fibro guide??

Invaluable.

Fibromyalgia: The latest in diagnosis and care.

Fibro Guide

THE PLAGUE AND SHOES APPROXIMATION

WHAT THE HECK HAPPENED?
The plague.

I went out a couple of weeks ago. I was actually feeling pretty good! I was feeling so good that I wore my black heels. The heels that were my mainstay. The heels I could run in and not trip. The heels I desperately missed.  The heels that came off the minute I walked in the door.

Then I got the plague.

There's an icky virus going around.

It's a cross between the flu and a really bad cold. 

And it doesn't go away.

Believe it or not, I've had this for a month. It started out as a sore throat and I went downhill rapidly from there. I bought all the packages of Chloroseptic that CVS had in stock. After a week of fevers coming and going and feeling like crapola I broke down. I went to the doctor. 

So, between the plague and the fibro...

This feels like the worst flu (without the stomach stuff) that you could ever imagine. Except it doesn't go away. All you want to do is go to bed and put the covers over your head. Everything hurts and aches. Kinda sounds like Fibromyalgia doesn't it? You wish it would disappear. (Just like the Fibro!) I've watched every crap show on Direct TV that I could find. I'm bored and my attitude is in the toilet. Please, please go away and take this stuffy and alternately runny nose and hacking cough with it. It's hard enough to sleep at night. Waking up every hour because of coughing just doesn't make it easier. So.....here I go chugging Robitussin all night. (hey doesn't dextromethorphan help the pain of Fibromyalgia????)

The antibiotics make me feel worse than I already felt. I don't do well on certain ones and now, it seems, I can add another one to the list.  First, you have to eat when you take them otherwise they tear up your stomach. That is a killer for me in the morning. I try to eat a piece of toast but I just don't like to eat when I first wake up. I only want my coffee and diet coke.  After I take the antibiotic, I'm so tired that I just want to crawl back in bed. I can't hold my eyes open and I just feel lousy. Sick and tired.

After a week of this something doesn't feel right. I should be getting better. This just can't be right. I call the doctor and he agrees. The first set of antibiotics didn't do the trick. I had to go back for a second helping. Yep.....let's change the antibiotics. Now, I'm starting ANOTHER seven days of medication. I have to be on the antibiotics because it's gone into a bronchial infection and he's worried about pneumonia. Yippee. 

What do I hate the most about this? I look terrible. My nose looks like a clown nose. Every touch of a Kleenex makes it even worse.  I think I've gone through 10 boxes in the past week. My face is red, my eyes are watery,  my nose is red, my cough is icky and my bones ache. My hair is hanging and I've worn the same t-shirt to bed for a week. I stopped looking in the mirror a few days ago. I'm breathing in essential oils that helps my breathing. Poor little Buster, he stays right by me and won't go out until I get out of bed. 

The fibromyalgia makes our bodies feel lousy on a daily basis. 

So what does this do? 

My favorite saying......

Add a tiara.

Hmmmm......a clown nose and a tiara......

I don't think the circus would take me right now. 

Bleh......

I'm feeling too lousy to change my sheets...

I'm feeling too lousy to change my t-shirt.

I'm feeling too lousy to do much of anything.

Snoopy had it right......