I'VE WALKED MILES IN MY SHOES

It's been awhile.

I need more shoes.

So.

More walking in my shoes.

Mornings? Coffee with a diet coke chaser.

Doctors just throw more pills at you that don't work.

I want to get moving again.

I never know from one day to the next what lovely symptom is going to pop up. 

 Of course then there are the words we all love to hear, "I get tired too."

I don't even remember what it was like to wear these all the time. 

Sometimes it just gets depressing.

It costs a lot to have Fibromyalgia.

It feels like you've been hung out to dry.

So when all those symptoms seem to never go away.

I always try to remember that tomorrow will be a better day.

or....

sometimes.....

I just can't help it......

I just have to say.........

THE LIE OF THE DANCE

Once in a while..

Something happens that touches us all.

Why?

Because it hits a little too close to home.

Hearing the news about Robin Williams death and the apparent cause really bothered me yesterday. In fact, it's bothering me today too. Sad, because the pain he carried gave birth to one of the most brilliant comedians of our generation and reflective because anyone who is chronic anything has probably toyed with that thought.

I call it the black hole.

I've been sucked down into it more than once.

Before all the health issues, when I was the real me I long for and remember, suicide was something I couldn't fathom. I thought that kind of thinking was weak. I couldn't understand how someone could do that and not think of their family and loved ones. Funny, what chronic pain does to you..... Then, something or someone brings the issue a little closer to home. Depression is hidden in the shadows. It's something to be ashamed of because you feel you should be able to control it. 

You can't

Chronic pain, whether it be emotional or physical, plays with your head. You're always vigilant because there is a fear that it can break you. The pain is stealthy. It creeps slowly and morphs into depression and the depression is a danger in itself. It wants to isolate you and tell you that this is all that you need. Pains evil touch makes us doubt our faith and our strength. Fighting it is the only option that we have. It's a seemingly beautiful dance that whirls and twirls and that calm soothing voice whispers in your ear promising peace and an end to suffering. We need to realize that it is a fight that we will have our entire lives or until, magically, a cure is found. 

Depression from chronic pain is just a wolf in sheep's clothing. We must stay vigilant and aware that the pain is causing our mindset. Depression will tell us that this fight isn't worth it. It will try to beckon our soul over to his side where he promises that the darkness will soothe our soul and give us a break from the pain. He gathers strength from our weakness and he plays us like a dealer to an addict. 

Depression isn't weakness.

It's easy to hid it with a smile and laughter.

But it's right there......

hiding in your eyes and your soul.

It causes us to hide and isolate ourselves.

Then it's got us right where it wants us.

Always remember that voice is a lie.

Please don't be afraid to tell your doctor. 

Seek help.

Depression isn't funny. 

Suicide Hotline: 1-800-273-TALK (8255)

IT'S BEEN A BAD DAY

I'm tired.

And it hurts,

And it's not going away,

There are days that I still don't know who I am. It seems to vary from day to day. I mean, I know the basics haven't changed but some traits seem to ebb and flow and I never know what trait is going to appear.

I was going through my closet and it started me thinking. I know....very bad thing to do. I tend to get the past and present confused. I still think that I'm able to run around in 4 inch heels and, at the drop of a hat, get up run around all day long. Maybe I shouldn't have started looking at my shoes.  I always get depressed when I see the beautiful shoes and realize that I can't wear them anymore without pain. Maybe it would be worth the pain to wear them............

Oh, who am I kidding?

The problem is I asked opinions. Should I keep them or give them away? Then I started thinking again and this time I started thinking about me. The me that I was and the me that could be again??

I was always semi-snarky. It's one of my personality traits that I happen to love. I have no patience with my own stupidity let alone others. I'm never rude but in my head I've said all sorts of things that I wouldn't want coming out of my mouth. I'm one of those people that truly enjoy sarcasm; in all honesty, I'm fluent in it. I get frustrated with myself when I can't remember people, places and appointments and I still get impatient with others. Especially when I'm in pain. Pain doesn't turn off an on at designated times. I wish it could. The only thing I'm certain of anymore is when the humidity starts to rise.

So it's back to finding me. The me who loves to laugh. The me who loves the ocean and could think of nothing better than waking up to the sound of the waves. The me who loves the Roadrunner and Yosemite Sam. The me who loves to read and play on computers. The me who loves to go on road trips. The me that finds beauty in nature. The me that loves photography. The me that loves to cook and play in the kitchen. The me that loves movies and television, especially crime dramas. The me that would love to hold hands while walking and talking about absolutely nothing. The me that would love waking up next to my best friend. The me that also has a reclusive side. The me that is confident and self assured. The me that struggles with depression and pain. The me that has Fibromyalgia and doesn't want it to define my life. The me that still struggles with that concept. 

I know that many of us struggle with finding ourselves in the midst of the pain. Pain has blurred the knowledge of ourselves that we used to take for granted. I'm so glad that we can open up to each other with our joys and our fears. We have the cloak of this invisible illness that we wear around our shoulders that gives us a personality all its own. 

This illness wants to suck the life out of us.

And it's a battle every day not to let it do that.

My problem? 

Or one of them.......

I make stupid decisions when I'm in pain.

Oh well.......

I shouldn't look at my shoes.

WOLF IN SHEEP'S CLOTHING

Just when you think you have a lot of pain.

You find out that it isn't as bad as you think.

I went to a support group meeting. I have to say honestly that I wasn't in the mood. I've been hurting so much and have been so tired that I just wanted to curl up in my chair and stare off into space.

There is a reason for everything.

Someone was there that was in so much pain and so overwhelmed that it was just too much to deal with for even another day. I have to admit that I've been there. I also have to say that in that moment the thought of bringing that kind of pain to my daughter made that thought go away. Prior to dealing with constant pain I thought that kind of thinking was terribly weak. It was something that I couldn't even fathom.

Enter the world of chronic pain.

Pain plays with your head. There comes a point when you need a break from the pain otherwise it will break you. The pain is stealthy. It slowly morphs into depression and the depression is a danger in itself. It wants to isolate you and tell you that this is all that you need. Pains evil touch makes us doubt our faith and our strength and fighting it is the only option that we have. No matter how we fight we need to realize that it is a fight that we will have our entire lives or until, magically, a cure is found.

Depression from chronic pain is just a wolf in sheep's clothing. We must stay vigilant and aware that the pain is causing our mindset. Depression will tell us that this fight isn't worth it. It will try to beckon our soul over to his side where he promises that the darkness will soothe our soul and give us a break from the pain. 

We must always remember that he lies.

Admitting depression doesn't mean that we're weak.

It just means that we've stayed strong for far too long.

It takes a strength of will to climb out of the dark into the light.

And one more thing.......

We are not alone in this fight.

We have each other.

LAY ME DOWN ON A BED OF ROSES

Ow, Ow, Ow.

A bed of roses sounds good right now.

Not what I got.

Ever since I got the epidural injections I've had a difficult time getting a handle on the pain. It not only didn't help the pain but it actually made the symptoms worse. For some reason the pain is just not going away.


Is it the injections or is it a doozy of a Fibromyalgia flare?
I wish I knew.


I'm trying to continue the movement. I know that it helps but, that too, has been a struggle. I go back to the pain management doctor tomorrow and I'm going to address the increase in pain. It's a delicate balance. I've been on the same level of pain medication for 5 years. I've never increased it because I knew that I'd never be out of pain. All I wanted was to take the edge off and bring the pain to a manageable level. Now, for the first time, I'm finding that what has always worked for me doesn't work anymore. 


I know the medication is monitored and very controlled. I'm a little hesitant to ask for a step up in dosage. I'm hesitant on a couple of levels. First, because of the very nature of the medication, I've never wanted to increase it. Second, I'm afraid that the doctor will refuse my request. It's a real complex situation and I'm not sure about it. I truly do need to get a handle on the pain but do I want to increase this medication? 


I don't know.
Maybe this is just temporary.


I'm hoping this is temporary but, this time, it isn't going away. This definitely comes under the heading of creative management. I'm doing the bath thing, aromatherapy, relaxation exercises and biofeedback. It falls under anything and everything that I can do to tolerate agony. It's amazing how intimate the relationship is between pain and depression. Chronic pain is depressing and there's no way around it. It changes your whole life and your outlook on life. It needs to be strictly monitored otherwise you can find yourself immersing yourself in the isolation and depression. 


It can happen in an instant. 


I have to say that it's a lot easier to be alone in the pain. It gets tiring answering all the questions. Even though it is well meant just hearing "do you need anything" or "can I do anything" all the time just seems to get to me. I know that its crazy to think that way but I can't help it. Maybe it's just my personality that likes to keep in control and those questions bring it home that I'm not. All I know is that I'm not in a healthy state right now. 


Does anyone else retreat in the face of pain?  It's a formidable opponent. You can't see how severe it is. It's very difficult to keep a happy face when the levels get up there. Because it isn't visible it's difficult for people to gauge and sometimes it affects how people view our fight. People cannot understand what's happening on the inside because they'll never see it on the outside. It is truly a constant struggle. 


There's time I think I'm winning and then times I think it is.


Did I just say "winning?"


Oh my...........I'm so not Charlie Sheen.


I really do want a bed of roses.............


I'm so much more Bon Jovi.

BODY APOLOGETICS

I know that we shouldn't do too much.

Having said that,

I offer my sincerest apologies to my body.

This time of year gets crazy. Partly, because it just is and partly because I tend to make it that way. I just love buying presents. I don't do it well because I get very excited and tend to give them before Christmas. Then I have to go out and buy some more gifts. This adds stress because my budget for presents is smaller this year.

I need to not shop until the very last day.

I love finding unusual gifts as well. My kids call them "my latest obsession." I use them as stocking stuffers and, to be honest, they're just goofy little gifts. One year it was dental dots and another year it was Blender Balls. 

Am I the only one that does this?

Anyway, since Christmas I've been staying close to home and close to my bed. My whole body feels like it's been run over by a truck or, as I like to refer to it; roadkill. I'm using this time to catch up and read blogs and articles that I haven't read in a long time. I feel like I've been neglecting my friends...well, I have been and I need to get back to them. My heart is heavy as I read how my friends feel right now.

This is a condition that plays with your mind. Chronic pain can bring with it all kinds of gadgets and it wants to set up housekeeping in your body. We still grieve for the life that we used to have but there is a difference between that and depression. 

Or feeling like we're utterly alone.

We go through this life blissfully unaware that at any moment our bodies could turn on us. When it does, it leaves us bewildered and afraid. The one thing we thought we could count on was our body. Is it any wonder that we don't know how to react?

We need to be very careful about the isolation that chronic pain brings to our lives. Isolation is depressions best friend. They want to lure us to that dark place and share with us its lies. It will tell us that this fight isn't worth it. It will whisper its lies to us every day and with every passing moment that lie gains a foothold on our minds. We have to remain vigilant.

That's where the battlefield is.

If there is one person out there that needs our strength then we need to be there for them. All of us lose our strength and will at times. We all need each other. We need each other to share our joys and triumphs and our laughter and tears.

I pray that the new year brings comfort and relief from our physical pain as well as our emotional pain.

I pray that the new year brings an avenue for each of us to realize and reach for our dreams all the while staying mindful that we need to recognize and accept our limitations.

I pray that the new year brings an awareness of Fibromyalgia and Chronic Fatigue and the research necessary to find a cause and a cure.

I pray that the new year brings renewal and restoration to those that I know and love.

I pray that we're also a little bit kinder to ourselves.

UNDER LOCK AND KEY

We're in shackles.

It's what we carry with us always.

Fibromyalgia.

I'll never forget the day I went to the neurologist and she suspected Fibromyalgia. She wanted me to get a brain MRI to rule out MS. I was terrified and got the results of the tests before she did. It was negative for any lesions on the brain so MS was ruled out. She told me that she almost wished I had it so it would be better defined than what I was going to be stuck with. It was said with a sense of defeat because she knew the battles that people with Fibromyalgia face. Believe me, I'm not minimizing MS by any stretch of the imagination but there is better funding for research and it has the backing of the full faith and credit of the medical community.

I felt like the world was closing in on me. In one sense it was. I've never been real fond of change and the changes that were happening because of a car accident and subsequent diagnosis of Fibromyalgia were truly life changing. 

I don't do real well with that.

I'm not a real open person. I've always been very, very private. I guess you could say that unless you know me real well, you don't really know me. The persona is solid and it's very difficult to let people in. I know I have issues and little by little I deal with them. I'd never be labeled "the great communicator."

Instead of hiding from my fears, I've basically asked them to tea.

I've accepted certain things about myself. What happened in the past is just that. I can't do anything about the past but I can certainly do something about my reactions to those triggers. That's probably one of the best things that I can say about being shackled by Fibromyalgia. It's opened me up to a medium where I'm forced to reveal me. It's absolutely mind boggling to me that I've been able to write about issues and fears. Not only can I write about them, I have no hesitation about posting these articles. I've discovered a great deal about myself and I've tapped into a creative side that I kept inside for so long.


I'll probably never be thankful that a car accident brought chaos and havoc to my life but maybe one day I will. I guess I'll never know until that day comes. What I can say is that no matter what door gets slammed shut I believe that God will open a window. Even on the days where I'm curled up in pain I know that I have a life purpose. Knowing that I can touch someones life, even one person's life, is a true joy.


I'm trying to convince myself of finding that joy deep inside right now. The humidity is 44% and snow is actually predicted for the higher end of town where I live. There were high wind warnings and some of the wind gusts were actually hurricane strength. Yesterday it was almost 70 degrees and today there was snow. 


So after all of this, what does it mean?


For me it means that I still feel shackled and chained by the pain and fatigue that accompanies this invisible disease. I still feel that I have limitations on my body and limitations on what I am able to do on a daily basis. I still feel like a real old lady at times with the creaks and pops that my body makes. I still feel like I've been hit with a baseball bat when the muscles spasms start in my legs. 


BUT.


As much as I feel shackled and chain I also know that I hold the key to my survival. I can make choices that will help with the management of pain. I can write and keep my emotional health on the upswing as well as my physical health. Anyone with a chronic illness needs to find sustenance to guide you through the pain, fatigue, disappointment and frustration that seems to follow us around. So, see the lock that keeps the chains wrapped tightly around us? We can turn the key. It may not get rid of all of them but at least we are the one that holds the key.


It's a good thing that I had brothers.


And that one of them taught me how to pick a lock.


Just sayin...........

INVISIBLE AND STRONG

Another year.

We're still invisible.

How can that be?

We're still smiling through the tears. When people ask how we are we still say, "fine." We still get irritated at the Lyrica commercial and we still are disbelieved by doctors. We hesitate to talk about the tons of symptoms that pick and choose which day they will decide to appear. 

We even doubt ourselves and each other at times.


No matter what I still hate feeling out of control in my own skin. I hate waking up in pain and I hate to go to bed in pain. What I hate even more is appearing weak. I hate the fact that I have to say that I have Fibromyalgia. When people ask what it is, I hate telling them. I hate having to explain what the pain has done to my life.


We now have limitations and before there were none. We now look at life in a totally different way. Even when the pain levels subside there is a place within us that knows it's only a matter of time before it will rear its ugly head again. The pain and fatigue makes you retreat and the feeling of uselessness comes over you like a wave crashing on the shore.


Can we ever be the same again?
Yes and no.


I am just coming out of a place where the pain was strong and intense. It threatened to place me back in the black hole; a place I don't ever want to be again. I escaped the dark but it was close.


What was different this time?


Right now I'm in a place that I haven't been in many years. I'm feeling strong; definitely not physically strong but mentally strong. I'm feeling a strength of purpose and it keeps me from going down in depression. I'm walking every day and it's helped more than I can say. It takes oxycodone to do it but whatever it takes is what I'll do. I wake up in the morning in pain...that hasn't changed but I have realized that the pain isn't going to go away so I need something to overcome it. Let me make this clear. I don't believe that the walking will overcome the pain but what it does is overcome what the pain can do to me.


I'm not going to stand on a soapbox and say this is the avenue for everyone. What I will say is that there's a place in all of us where we can go and be strong. I know this because we have the strength to endure the kind of pain that we do on a daily basis. We all have a very high pain threshold and people don't understand that.


But we do.


So what I'll say is that I pray for all of us to look deep inside and find that place where pain cannot touch us.


It's there.


I know it.

IT SOUNDS VAGUSLY FAMILIAR

All of a sudden a lot of things are emerging.

Brain things.

It makes me a little nervous.

Today I read about 4 articles concerning the stimulation of the Vagus nerve and its possible use for Fibromyalgia. 

Am I the only one that gets nervous about this stuff?


I just don't like the idea of anything fooling around with my brain until a little more solid research is done. Creating different pathways without knowing all of the effects that it has is just a little unnerving. 


The Vagus nerve is one of the longest cranial nerves. It's name is derived from the Latin word for wandering. Maybe because it wanders from the brain stem, neck and down to the abdomen. This wonder of a nerve helps regulate our heart beats, controls muscle movements, keeps us breathing and helps keep the digestive tract in working order.


Tell me our bodies aren't beautifully and wonderfully made!


In this new therapy short bursts of electrical energy hit the brain through the Vagus nerve. It seems that this stimulation inhibits inflammation in our bodies by suppressing cytokine production. Cytokines are released into your system and they help regulate our immune response. In people with Fibromyalgia these pro-inflammatory little babies provide a signal to the central nervous system and create an exaggerated response to pain. Thus, if the Vagus nerve stimulation can inhibit the cytokine production maybe it can reduce the pain of Fibromyalgia and Chronic Fatigue. 


It seems that the side effects of the VNS (vagus nerve stimulation) therapy run the gamut from alteration of your voice, throat pain, headache, feeling out of breath, pins and needles feelings up to nausea and vomiting. 


All I have to read is nausea and vomiting and hell would freeze over before I would try it. (Did I ever mention that I have a phobia about vomiting???)


Upon further investigation I found out that, GET THIS, meditation can also stimulate the Vagus nerve.! It seems that a state of calm and peacefulness can activate it. So this begs the question, "Is it possible to control this voluntarily?" I almost hate to go there because too many people dismiss us as neurotics anyway but can we get a handle on the pain through meditation? I know that the brain can do amazing and miraculous things and I'd rather try meditation that having something implanted in me to send electrical charges to my brain.


OK.......I'm in..........Can I get an "OM?"


Sh...........


I need to be very, very quiet........................

THERE'S A SUPPORT GROUP FOR THAT

Some people think that by holding on you're strong.

Sometimes strength comes from letting go.

I went to the Fibromyalgia support group meeting a few nights ago. I have to say that it's a marvelous group of women. It's nice to be around people that understand what Fibromyalgia does to your body as well as your life. We live with chronic pain. Chronic pain is described as pain that lasts for longer than six months and affects how you go about your daily life. 


Putting it more succinctly: You're a prisoner in your own body.


I always took my body for granted. I knew my back would go out a couple times a year and during that period of time I'd be immobile. I'd get a couple of shots and have the chiropractor adjust my spine and I'd be back to life as usual. It was excruciating but I knew it would have an end. Just suck it up, put on your big girl panties and deal with it.


Until.


Never in my wildest dreams did I anticipate living a life where pain would be my constant companion. Pain has affected my life, relationships, career; everything that meant something to me. Even on my best days where the pain level is very low, it's still there. It takes effort to go on and try to live a somewhat "normal" life. The problem is that this pain is forever. There is no cure for this invisible disease so this is a life sentence. 


Knowing and the acceptance of that fact can really screw with your head.


The purpose of the meeting was to discuss chronic pain and depression which seem to go hand in hand. I can totally understand that one. There were days that I didn't think that I wanted to deal with this illness any longer. It was a black hole that kept me isolated and down. I didn't have the strength, of mind or body, to deal with it. It was at my worst that I realized that letting go was the way to find my strength.


I can't go back to the way of life I had before the accident. I have come to realize that I will have some level of pain with me all of my life. I now know that there will be those that will never believe the pain and your limitations and there will be those that will look past it and see the person inside. What was interesting to me was talking to some of the women at the meeting. We all look at each other and think the other has it all together. Someone actually said that to me. Me? I have it all together??


Not even close. 


I was really intrigued by this couple at the meeting. They had a very powerful and moving story and their use of this kind of feedback seemed very encouraging. I'm so curious that I'd like to have a consultation with them just to see how this works. I'm not sold yet, but very curious. Can chronic pain change the neuro-pathways in the brain and, if so, is neurofeedback a viable option for treatment? I understand that it has generally positive results but I'm a little concerned about fooling around with the brain. There's so much that is unknown yet. If this can change the way the brain functions permanently could there be real adverse side effects if something should not be done correctly?


What it comes down to is that I'm gradually moving into the acceptance phase here. I'm realizing that I can't do anything about the pain but I can manage it. I don't know how it happened but I seem to be at peace with all of this.


Can it be?


Am I really progressing?


I still don't know how it happened but my thoughts seem to be moving in that direction.


Well, at least for today.


Tomorrow may be another story all together.

PIERCE THE VEIL

It never fails.

The weather acts up.

The triplets show up.

Did I say triplets?

What happened to the twins?

Lately I've been blessed with triplets. The twins were pain and fatigue but I've added another sister. 

This one is depression. 

It's been difficult to write about "me" lately. I've missed the feeling that I get when I write. That feeling that I've got something to say and the fun of finding the right words to say it. I've always believed that if you're going to write you should be able to push back the veil and be open to "being open."  The beauty of sharing yourself as well as healing yourself, however, there is only so much pain and fatigue that you can take before the other sister shows up. It's not fun trying to smile when you body is in pain. 

Then you stop trying to smile.

I feel like I'm existing until I have a day without pain and fatigue. Hell, I'll even take one of the two. Then when I have a day where I can function, I try to get the things done that I need to do. Or, I try to do things that are even a little bit of fun. 

Fun?

Do I even remember that?

I'm just not having a good time lately. No matter what my circumstances or issue I've always been able to find humor in my life. Humor can keep you going in difficult times. I've always believed that laughter is truly the best medicine. I need to remember that because that particular medicine is a little tough to swallow right now. 

I sound like Mary Poppins. 

I could write a whole novel on my life with Mary Poppins. First, I can practically recite the movie. When my daughter was just a few weeks old the penguin scene caught her eye and from that moment on Mary Poppins was a staple in our home. It would calm and quiet her and I took full advantage of it. She would get fussy and I'd put on the movie and she'd be fine. We watched it until she was two and then she found Winnie the Pooh. Just as an FYI, I can recite that one also. 

But I digress.............again..............

Ever since the deposition I've been in a huge crash. I still have to review it but I can't get through it. I need to look for mistakes but it's difficult to read the irritatingly little print right now. The cognitive issues are rearing their ugly head as well. I know that stress has a lot to do with it but this time it hit me with a vengeance. I have tried meditation and visualization but I just can't seem to get there. Nothing seems to be working correctly and it's frustrating. I just need to find laughter and fun. 

I'm whining again and I know it. When I get tired of all the crapola that goes along with the pain then I know I'm about to turn it around. I need to stop whining about the pain and fatigue and pick myself back up. I think the problem was the deposition. It unleashed a lot of anger about the car accident. The opposing attorney will do anything to discredit me and the fact that his client was racing through an intersection without looking where he was going wasn't even addressed. 

One of these days I'll be able to let it go. 

One of these days I'll have to let it go.

I am just so tired of doing nothing.

I am tired of hurting.

I am tired of being tired.

And I am really tired of not having fun.