THE MUSCLE REBELLION OF 2015

Oh, what a beautiful morning!

Oh, what a beautiful day!

I've got a wonderful feeling....

blah, blah, blah....

What a crock.

First of all, I've never been a morning person. Ever. My body just isn't set up that way. When I say that I walk into walls, I mean it.  As long as I can remember I've loved to stay up late, sleep late and  I tend to do my best thinking late in the evening.   However, as I entered the work force I gradually re-adjusted my body clock. My dream schedule would have been actually adding hours to the day because there never seemed to be enough. Yep, I was on hyper-drive. 

Past tense.

About 90% of the people with Fibromyalgia experience muscle stiffness in the morning. The stiffness can occur in your muscles, tendons, ligaments and joints throughout your body. I know that it takes about 15 minutes before my feet can hit the floor, There are times that it's much longer.  My back, hands, arms, legs and feet feel like the Tin Man without his oil can. It takes some time to get body parts moving. Every muscle in my body is screaming and they aren't screaming that they love me. 

The muscle rebellion is in full force.

Actually this doesn't just occur in the morning. If I sit down or have any period of time when I'm not moving, the stiffness and muscle pain hits. Sometimes I can't even walk for a few minutes because of the pain.  I feel like an old woman trying to get up and move. I probably creak too. 

The package just keeps looking better and better.

It's interesting how the pain fluctuates and radiates. The stiffness is bad in the morning and then gradually improves in the afternoon. Then it starts to return in the evening accompanied by muscles spasms. Throw in a little fatigue and insomnia and there you have my day. I spend a lot of time in the jetted tub because the swirling water helps the pain. Some days there isn't a place on my body that doesn't hurt. 

Well, I exaggerate..........maybe my eyebrows don't hurt.

All I seem to do lately is live in management mode. 

And I'm not doing a real good job of it.

Like I said.

Beautiful morning?

What a crock.

ANOTHER MILE IN MY SHOES

When people say,

"I know how you feel"

or 

"I get tired too"

Give them my shoes for awhile.

How does your day start out? If it's anything like mine you're hobbling to the kitchen feeling like the tin man in bad need of an oil can.

I'm on a search for caffeine.

I need coffee and as bad as it is I have a diet coke chaser. I've tried giving it up cold turkey but I don't like plain water. I will say that I've cut the diet cokes WAAAAY DOWN but first thing in the morning....well, so far it ain't happenin'.

Then I slug down the medications that start the day. I take my thyroid medication, supplements and pain medication. This will get me through until noon. Fibromyalgia combined with hypothyroidism and a dose of autoimmune thyroiditis keeps you feeling like you're running on empty.  Energy is at a minimum and you're just bone tired. 

Tired isn't the right word and I can't think of one that adequately describes it.

As time goes on my patience level with this "syndrome" has dropped to a new low. We went to Hawaii and the beach is the place where I find my peace. I usually don't like to sit around doing nothing but put me on a beach and I'm one happy camper. Going there and dealing with the plane trip and the headaches of travel was something new to me. By the time I got to the beach the pain was horrible but I was determined to put it aside and feel the peace of the water. No matter what I did or how I distracted myself finding peace was difficult. 

I still felt like crapola that washed ashore.

People tell me how fortunate I am that I don't work anymore. I wish I felt fortunate. It really is tough to be in management mode on a continual basis.  At times, there is frustration but along with it comes the realization that life could be a lot worse. We can smile but that smile sometimes masks a great deal of pain. The smile also conveys a sense of well-being. Funny, isn't it? Well-being; that isn't even close to the real meaning of the word.

We manage a myriad of symptoms that change on a daily basis.

There are so many symptoms that plague us. We even ask ourselves.....is this the fibromyalgia or something else? I get tired of explaining that another ugly symptom has reared its ugly head. I am lucky in one respect. I've got an incredible doctor that describes himself as "nosy." He doesn't brush me off and he sincerely cares about how I feel. We try to rein in the beast but there is a tiny place that houses the fear that every twinge and twitch brings. 

Trust me, it costs a lot to be sick.

Insurance or not....fibromyalgia is expensive. The management isn't cheap and it seems like something is always out of whack. Now, it's my thyroid that is dealing me fits. The thyroiditis is flaring up and my internal thermostat is fluctuating like crazy. I can't sleep, my skin is dry and I get hot and cold. They found a nodule on my thyroid and I have to have that checked out.  What comes next?

The days of running around like I don't have a care are history.

Everything that used to be precious to me has faded into the background. I had boundless energy, thrived on stress that came with my job, working in sales and I had a memory that bordered on eidetic. There was a sense of pride in myself and my abilities that are a vague recollection. Sometimes I don't recognize the person I've become......the person that can't remember why she walked into the room. The fibro fog......it burns off but when it hits it's thick and it envelops your world in a cold and thick blanket.

Back to the symptoms.

Pain, fatigue, muscle spasms, insomnia, stiffness when you stay in one position too long, difficulty remembering or concentrating and numbness and tingling. Then there's the sensitivity to odors, light, chemicals, noise, medications and heat or cold. They symptoms that I mentioned are just the top ones. There are MANY MORE. These symptoms can intensify due to time of day, exertion, hormonal fluctuations or even the weather. Is it any wonder they can't get a handle on this? 

So here's what we feel like

and 

here's what we were.

and here's what we will be

It's Fibromyalgia awareness month.

Try to look past our smile.

We're trying our best.

There is no cure.

Sometimes we're not believed.

And that's just the good stuff.

OPEN MOUTH INSERT FOOT

You'd think I'd learn.

Nope.

I'm going to keep my mouth shut.

When I started feeling like I was strong and then started spouting off about it as well, I set myself up for the Fibromyalgia to make me eat my words. It kind of falls under the category of never say never.

I wasn't disappointed.

Just when I thought that I found a place that the pain couldn't touch, well, it found its way in. It took everything I could do to continue to walk. Not only did it take every bit of concentration and a discipline I didn't know I possessed to continue but I had to wrap my ankles and feet in ace bandages. Everything felt weak and I ended up stopping every five minutes to give myself a break. 

I didn't want to write anything either.

Have you ever had so much that you wanted to say but couldn't find the words? I kept reading some of the comments that I'd gotten from the prior post. Needless to say, I was so unbelievably touched by them. If there's anything that's powerful it has to be the support of the wonderful women that respond to the posts on this blog. Whenever one of us feels like giving up or loses the will to fight, these women are right by your side to extend their hand to pull you back up. When one of us has a triumph or accomplishment they are also there to applaud.

There's power in people and friendship.


So I'm back to looking for that special place where personal power supersedes the pain. I think I've got the discipline down but what I haven't figured out is the hiding. I've got quite a few emails that I've ignored. I just don't have it in me to explain. I feels like it's just too much to put on anyone else. I know that it's just me; I'm very sure others don't feel that way but in hiding I can reclaim my balance and when it's there I will be ready to face the world again.


Why is that?


There is still a small amount of hope as I write this. I need to get out but at least I'm still continuing to move. I'm hoping the weather will break and the fall weather will set in. I do pretty well in the fall and winter. I know that the cold weather really bothers some people with Fibromyalgia but I seem to thrive in it. It's the heat and humidity that does me in......make that heat and/or humidity. Any combination messes me up. Even when the weather is good I still wake up feeling like the Tin Man who hasn't gotten a shot from the oil can.


Creaky joints and aching muscles: such and attractive package, isn't it?


I just think it's so funny (well, not funny) that when I start feeling a little strong, I have to go and open my mouth and announce it. I should have waited and reevaluated myself after a few weeks. This way I wouldn't feel as stupid. It's like praying and asking God for patience. You just don't do that because you've set yourself up for a real doozy of a test.


So it's not as bad as it could be.


It's not as bad as it has been.


But it's still not what it should be.


I don't think I should start singing "Eye of the Tiger" just yet.

JAGGED LITTLE PILL

Pills.

Supplements.

This is what I feel I'm made of.

Just one more.

Maybe the next one will do the trick.

I feel like all I do is take pills. When I wake up in the morning I take pills and when I go to sleep at night I take pills. It doesn't matter that they are all prescribed or supplements. It's just more pills than I can handle.

Where do I start? Well, let's start with the thyroid medication in the morning. Before the car accident I went to the neurologist because my hands were cold and tingling. The neurologist wanted me to get an MRI to rule out neurological problems that could cause those symptoms. It turns out that it was my thyroid. And I was hypothyroid with a vengeance. I thought that once I started the medication I'd lose weight. It didn't matter to me in the slightest that the tingling and coldness in my hands went away. All I cared was the weight that I couldn't seem to lose would come off once I started the medication. Maybe I'm naive but if the weight stays because your thyroid is off balance it stands to reason, at least in my mind, that once it's regulated the weight would come off. I still don't get it.

After that, the supplements are taken en-mass. The alphabet vitamins. The A,B,C,D and E.,  DHEA, CoQ10, multi-vitamins are gulped down with a protein drink. Every morning I look at those and just wonder if I can swallow them again. Pain medication is taken so the stiffness and pain that comes in the morning can be tolerated. You know what's funny? I have been asked why the strength of the pain medication that I've been taking for years is the same. That is a really easy question for me to answer. I've always been afraid of the amount of medication that I'd have to take to get rid of the pain.  I don't want to be zonked out and a zombie. It's just not a good place to be so I've resisted upping the strength of the pain medication. It's a double edged sword.  It's almost implying that if I'm on the same strength the pain must be the same and that's not it at all. It's fear plain and simple. Well, let's keep going on.............

Then comes the morning coffee. Or some semblance thereof. My coffee is mostly vanilla powder and sweet and low mixed with a little bit of coffee. My daughter shudders when she watches me make my "coffee." 

Do the supplements work? I don't notice any difference but, funnily enough, I am a little afraid to stop taking them. After all of the pill taking I massage Topricin in my hands and feet. Believe it or not, this is what it takes to get moving in the morning. 


If you haven't tried Topricin you should. It's a homeopathic cream for pain. I got it a Whole Foods but you can also buy it online. I've included the link so just click on the name and you can read all about it. Topricin recently received a patent for the treatment of Fibromyalgia pain. It's an amazing product and it really seems to help.


By the time the evening arrives it's time for the last round of medication. The evening includes magnesium, pain medication and muscle relaxers. I try to get through the day without loading up on the muscle relaxers but that depends on the severity of the muscle spasms. Then I start the ritual for sleep. This involves lavender aromatherapy and pillow spray. Lavender vanilla cream is massaged into my arms and then I take Mid Nites. They are melatonin melt away pills that help me relax and drift off into sleep. 


Well, do they really?  


I still have a problem sleeping. I can sleep for a few hours and then I'm up. Where I could fall asleep at the drop of a hat before.......well, there are a lot of things that I used to do BEFORE.....


Before what you ask?


Before Fibromyalgia.
Before the car accident.
Just before. B-4??


Bingo.

MY LUCKY ROCKETSHIP UNDERPANTS

"Some days even my lucky rocketship underpants don't help."
Calvin and Hobbes by Bill Watterson

I love Calvin and Hobbes. I always have. There's just the perfect mix of innocence and snark in this cartoon and it appeals to my sense of humor. 

It also has something for every occasion.

This is one of those times and one of those days.

I just don't know why the pain has taken up permanent residence. 2010 was a tough year for the people that I know. Fibromyalgia certainly kicked fanny last year and 2011 doesn't seem to have any changes in that arena. 

So when I wake up in the morning and it's more of the same it tends to get a tad disappointing. I want to go to the gym and, trust me, I'm going to force myself to do just that. It's just that I'm forcing myself and I'm not looking forward to the exercise that my body so desperately needs. I've walked and I've been in the pool. I have to say that the pool is definitely easier on my muscles but I'm not real keen on public pools. I guess I have turned into a little bit of a germophobe.

I got on Facebook and a friend of mine said that she's going to make today a positive day. Those words speak volumes to me in a bittersweet way. It's great that she's in a frame of mind to purpose in her heart positivity, however, she's in a frame of mind that she has to purpose to be positive. See what I mean here? There's no opening your eyes and being excited to greet the day. 

We open our eyes with fear and trepidation.

We open our eyes and gingerly move to see how our muscles are going to react. 

Are we just having a minor uprising or a full blown rebellion today?

The muscle twitches really are painful for me and those have been on a real rampage lately. So, I am also going to purpose in my heart to greet the day on a positive note. I have read the optimist's creed. Have you read it?

Promise Yourself

"To be so strong that nothing can disturb your peace of mind.

To talk health, happiness, and prosperity to every person you meet.

To make all your friends feel that there is something worthwhile in them.

To look at the sunny side of everything and make your optimism come true.

To think only of the best, to work only for the best and to expect only the best.

To be just as enthusiastic about the success of others as you are about your own.

To forget the mistakes of the past and press on to the greater achievements of the future.

To wear a cheerful expression at all times and give a smile to every living creature you meet.

To give so much time to improving yourself that you have no time to criticize others.

To be too large for worry, too noble for anger, too strong for fear, and too happy to permit the presence of trouble.

To think well of yourself and to proclaim this fact to the world, not in loud word, but in great deeds.

To live in the faith that the whole world is on your side, so long as you are true to the best that is in you."

The Optimist Creed was authored in 1912 by Christian D. Larson, in his book "Your Forces and How to Use Them."

I really try to read this without smiling but by the time I hit line four I know I'm in real trouble. How do you take a person that tends to see the glass half empty and have this really hit home? There are lines of this that are no trouble. I try to always make my friends feel worthwhile but I can't always see the sunny side of life. I guess I'll have to keep reading it over and over. Maybe then it will sink in.

I think I'm being optimistic when I quote things like, "when you see the light at the end of the tunnel it may be the train coming at you full speed." That way I'm never surprised or taken off guard. I've always been a bit snarky and a glass-half-empty type of person. The Fibromyalgia just pushed it over the edge.

What?

I'm not being optimistic?

Maybe it's true.

My lucky rocketship underpants aren't helping today.

THE MUSCLE REBELLION

"Oh, what a beautiful mornin'.

Oh, what a beautiful day.

I got a beautiful feelin'.

Everything's goin' my way."

(Rodgers and Hammerstein)

What a crock.

First of all, I've never been a morning person. My body just isn't set up that way. When I say that I walk into walls, I mean it.  As long as I can remember I've loved to stay up late, sleep late and  I tend to do my best thinking late in the evening.  However, as I entered the work force I gradually re-adjusted my body clock. My dream schedule would have been actually adding hours to the day because there never seemed to be enough. Yep, I was on hyper-drive. 

That was BF (before Fibromyalgia).

About 90% of the people with Fibromyalgia experience morning stiffness. The stiffness can occur in your muscles, tendons, ligaments and joints throughout your body. I know that it takes about 30 minutes before my feet can hit the floor, There are times that it's much longer.  My back, hands, arms, legs and feet feel like the Tin Man without his oil can. It takes some time to get body parts moving. Every muscle in my body is screaming and they aren't screaming that they love me. The muscle rebellion is in full force.

Actually this doesn't just occur in the morning. If I sit down or have any period of time when I'm not moving, the stiffness and muscle pain hits. Sometimes I can't even walk for a few minutes because of the pain.  I feel like an old woman trying to get up and move. I probably creak too. It doesn't help that the humidity is up to about 53%. The rain is coming and I can feel it in every move that I make. The humidity definitely makes the stiffness worse.

I'm better than a barometer.

There is the old familiar tightness and stiffness in my muscles but there is also a deep ache that hits my hands and feet. When I went to the pain manager she kind of dismissed it and said that pain was arthritis not Fibromyalgia because Fibromyalgia is all muscular. I was too tired to fight her but, boy is she wrong about that! I just hate it when they start that dismissive garbage. My brain artificially amplifies pain and even the lightest touch can cause excruciating pain. What's not to get about this? Arthritis??

It's interesting how the pain fluctuates and radiates. The stiffness is bad and the morning and then gradually improves in the afternoon. Then it starts to return in the evening accompanied by muscles spasms. Throw in a little fatigue and insomnia and there you have my day. I spend a lot of time in the jetted tub because the swirling water helps the pain. Some days there isn't a place on my body that doesn't hurt. 


Well, I exaggerate..........maybe my eyebrows don't hurt.

I've tried to be proactive. I think it's important in the management of pain. I go to the gym to walk in a controlled environment. I don't like walking on the street. If something happens and I need to stop I've got a place that I can rest. Plus, it's got the water. I usually get in the jacuzzi after I walk. I know that walking will help me eventually but I still need to take pain medication to venture out of the house. Managing the pain. 

All I seem to do lately is live in management mode. 

And I'm not doing a real good job of it.

Like I said.

Beautiful morning?

What a crock.