THE YUCK FACTOR

Well,

it seems like it's back to the drawing board.

Let's hope this works.

I'm really sick of going to doctors. I guess what I mean to say is that I'm sick of feeling so lousy that I have no choice but to go to the doctor. I have to say one thing. I do have a great doctor. He's very curious and he believes me when I tell him that I feel lousy. This, however, means going for more blood tests.

Do I have any blood left?

After 17 vials...........

Evidently, my thyroid is still borderline. 

The autoimmune thyroiditis is in full force.

Everything else? Right on target.

However, they found a nodule in my thyroid. So now I have to go through another ultrasound and then if it's growing there's another fun test. A biopsy. If that happens I think I'd actually be relieved. At least then I'd know why I feel the way I do. 

The problem is the symptoms are so intertwined.

I don't know if it's the thyroid or the Fibromyalgia. 

The fatigue is overpowering. I won't even count the pain because that is always with me. It's just that my hands have hurt more than usual. I don't think its the Fibro because I just feel so..........

Different.

I gave in and went to the endocrinologist. More blood work and I'm back on the Armour Thyroid. I did feel better on this when it was prescribed to me a year ago. Hopefully this will pull me out of the constant feeling of yuck. Why they felt the need to change it is beyond me. 

The symptoms of hypothyroid and Fibromyalgia are SO close. How do I know this isn't Fibromyalgia? For one thing.....my hair. It's very dry and thinning out. The doctor said the Cytomel will do that. Why in the heck did they ever prescribe it? I know it's more precise than Armour Thyroid but it can't be that big of a difference. The other thing is that my skin is much drier. 

Try peeling off the tips of my fingertips. 

The scary thing is that no amount of lotion or cream would stop it. I even got steroid shots but that didn't work either. The only thing the shot seemed to do is make me gain 5 lbs. overnight and that does not work for me. Finally my manicurist gave me some lotion from Vietnam and, believe this, it helped it within three days. Three days later.......it was GONE.

Now I can get my nails done again. 

That problem is fixed.

Now........

All I care about is that I lose weight......

and the fatigue........

and the joint pain.........

and the weight........

THE FIBROMYALGIA SERIES PART F

The Fibro series.

And, golly gee....

we're going to start with the letter "F."

Guess what that stands for??

Frick??

F is for Fibromyalgia that wants to suck the life out of you. It takes a vibrant, thriving person and turns them into something that is unrecognizable. I look in the mirror with wonder and say, "what the hell happened to me?" 

F is for the fog that turns a fairly intelligent person into a lump of jelly. There are times that I actually think an amoeba has a higher IQ than I do.  The fog has me looking for glasses and they're on top of my head. It's scrambling for the keys that are right in my hand. It has me standing in the middle of the grocery store wondering what I was supposed to buy.

F is for the fatigue that isn't relieved by sleep. It's the feeling that roadkill feels better than you do. It's going out to do simple errands and coming home feeling defeated because you haven't expended hardly any energy. 

F is for the fun that we miss. It seems that making plans is a thing of the past. If we do make plans there is always that caveat that "it depends on how the day progresses."  Sometimes I feel like I sit in the shadows because I don't want the focus to be on me. I used to have a lot of fun. Now, I don't.

F is for fat. I don't get as much hard exercise anymore so it's harder to lose weight. Even though I'm not, I feel like a big fat lump. 

F is for frustration. Everything about this illness frustrates me. Every single time I get dismissed by another doctor I get frustrated. When I get the look that tells me the word Fibromyalgia is a garbage can diagnosis, I get frustrated. I get frustrated when I can't think straight and I get frustrated when I don't feel good for days on end. 

F  is for force. There are the days that I finally say "screw it" and force myself to either work out or push myself beyond what my body decides I'm able to do. I do this periodically when I get tired of being tired.

F is for the fetal position that I find myself in after I get finished doing the above. 

F is for fearful. Every time a new symptom rears its ugly head I become fearful. I'm afraid of my own body because I can't trust it anymore.

F is for facade. I do this well because I don't want people to know how bad the pain is or not to appear weak. I hide behind this smiling facade and only those who know me well can see beyond it.

F is for faith. I have faith that it will all work out. It took awhile to get here. I've suffered through the confusion about my path and through the loss of my identity and income. Faith has brought me through so many things in my life and it has never failed me. I just have to search to find it and bring it front and center.

F is for forgiveness. I think that we need to forgive ourselves for being sick. We are so used to having control over our bodies and our lives that it's tough to navigate this thing called chronic illness.

F is for flares. Nuff said.

F can be for so many things,

feeling frail,

feeling feeble

feeling frightened

feeling forgetful

feeling fearful

feeling those fears are frivolous

feeling that finally life will never go forward.

But then,

F can ultimately stand for freedom because we can be free of fear.

F can also stand for fibromyalgia allowing us,in spite of everything, to fly and find ourselves.

What other F-words do you know??

RUNNING ON EMPTY

Just what I feel like.

Just what I'm doing.

I have been dealing with the puzzle of a thyroid that's attacking itself, nodules on my thyroid and a lovely flare that has knocked me on my fanny.

I can't seem to keep my eyes open. I've been sleeping 12-14 hours a day. Normally, I wouldn't mind that but it's been forced on me. My skin looks like alligator skin and it has started to itch. There's a little difficulty swallowing but the one doctor I went to "isn't real concerned about it."

ISN'T REAL CONCERNED?

I feel like crap. 

Let me rephrase.

I feel like something that crap brought in. 

So let's examine the evidence. 

I'm real tired. I'm tired enough that I can fall asleep mid-sentence. 

I'm moving so slow that a slug moves at mach speed.

I feel like I'm going through menopause again. One minute I'm hot and the next I'm cold.

I'm going through lotion like crazy but still have that alligator look.

I'm gaining weight. (THAT IS BAD. I CAN DEAL WITH THE REST BUT THIS????)

I ache more than usual.

My skin is peeling underneath my nails.

My hair is shedding worse than Buster's.

I'm craving carbs. (Ok.....so what??)

I can't remember my own name at times.

I feel like a vampire because I hate the light.

All of this points to problems with the thyroid. This brings me to an interesting topic that I'll write when I can pick my head up. The symptoms of thyroid problems mimick Fibromyalgia.

So I'll write....

What came first the chicken or the egg?

Thyroid of Fibro??

I'm going back to bed.

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.

SEVEN INCHES FROM THE SUN

110 degrees.

Under the eaves.

In the shade.

I've never liked the heat and I like it even less now. You'd think that after 48 years in Las Vegas that I would get used to the desert heat.

Nope.

Not for a minute.

I didn't mind it as much when I was in the pool on a raft but with the onset of age and some common sense, I stopped baking in the sun. Then, when I was working, I spent a great deal of the day in the sales office. I only ventured outside when I couldn't talk anyone into not looking at their home site in the middle of the day. 

Since the thyroid regulates temperature is it still a by-product of the autoimmune issues I have with it? I take enough thyroid medication to keep it in the "normal" range but maybe it isn't enough. All I know is that the heat makes me feel awful.  At least I will be getting some of that natural Vitamin D. Did you catch the sarcasm of that last statement?

We're going to have excessive heat this week. I wasn't kidding about the 110 degrees. The official heat is measured at our airport under the eave in the shade. Really. In all actuality it will probably be 117 in the lower parts of the valley. This kind of heat is smothering. The temperature in the car can easily get to 140. You don't mess around with those kind of temperatures.

You have to plan any errands in the "cooler" part of the day. That means before 10 in the morning and after 7 at night. Even then I take a cooler with me to the store because a quick trip can mean frozen food can start to thaw. Sunglasses are a must if you have light sensitivity (which I do). 

So I'm hibernating this week and praying that the heat will break, otherwise, it's going to be a doozy of a summer. That doesn't take into account the amount of money I'll be donating to Nevada Power.

Gee, I can't wait.

So here I am wishing I was in Antarctica.

But.......

it's a dry heat.

WALK MORE MILES IN MY SHOES

Fibromyalgia Awareness Day is May 12.

Walk more miles.

In my shoes.

Sigh.

Anyone who knows me knows that I LOVE shoes. My closet is filled with them and Nordstrom's anniversary sale was my nirvana. I'd go through those racks of shoes and with a huge smile on my face buy all sorts of heels (at least 3 inch because anything less was totally unacceptable) for me and for my daughter. So, for me, it is fitting to bring my shoes along to my Fibromyalgia Awareness Day post.

Gorgeous, black, sexy, high heel pumps. I don't know about anyone else but I felt like a million bucks when I wore them. If you look at them you'd never think that the feet inside those pumps hurt like hell. We wear our invisibility like those shoes. We might look fabulous but inside we wish we could crawl right back into bed. No one sees what it's like to crawl to the shower and almost cry as the water pounds your back. No one sees that lifting your arms to put on makeup takes as much energy as a 5 mile run. Forget about lifting the hair dryer. By the time we're done we might as well just stay home.

Most of us were typical Type A. I know that I thought that I thrived on stress. One of my favorite lines was from Top Gun. I did love going at (at least) Mach Two with my hair on fire. I worked hard, played hard and rested hard. Usually my game plan when I'd clean my house was to start early and work like a tornado and NEVER stop for a break. When I did stop it would take the jaws of life to move me from the couch. Come to think of it, I worked that way too. My co-workers would call me "the tornado" because I'd come in, rearrange the sales office and then when it was done; stop. Yes, I drove people crazy.

Now, it feels like aliens inhabit my body. What are all these strange pops and creaks? Why does every bone and muscle in my body go from a dull ache (on a good day) to blowing past 11 on the pain chart? Why am I better than a barometer and cringe in fear when I feel a storm coming? I used to love rainy days. Visually, I still do but I know I'm going to hurt like hell. Even my family calls me giving me weather forecasts. My hands start to ache with every tick of the humidity levels and I know what's coming and it isn't good.

It seems that all doctors want to do is throw more pills at us that don't work. They want to try to say that it's a Vitamin D deficiency or some other supplement that will "cure" the Fibromyalgia that they don't seem to believe in anyway. We've taken everything out there and none of it gets to the root of the problem. The research points to a central nervous system malfunction and we keep getting sent to rheumatolgists. Maybe we need a neurologist? 

When will someone try to figure out why the switch was suddenly flipped? There is too much Substance P (which heightens our awareness to pain)  in our spinal fluid. Our glutamate levels are abnormally high. Our internal amplifier is turned up full blast. Even the slightest touch can bring us to tears. The medications that are used have side effects that are worse than the symptoms we experience.

Why do we have tons of symptoms that ebb and flow with each passing second? Why do some people have more fatigue and others have more pain? Why is the IBS worse with others? We can all agree on the myriad of symptoms but some medications work for some and not others? Treatment and management are as different as the colors of the rainbow. Why do we feel foolish when describing our symptoms in an almost apologetic manner? We feel guilty for feeling sick. Sick and tired.

We feel like we are being labeled "lazy." We're tired of research for every other disease out there but when it comes to Fibromyalgia and Chronic Fatigue we are the proverbial red headed step child. The problem is we lose confidence because we don't recognize who we've become. We believe our own bad press: we feel lazy, whining and maybe, just maybe, if we get up and just DO SOMETHING we might feel better.

We are the wounded warriors.

We are invisible.

We are in pain.

We are tired.

And we don't know why.

Fibromyalgia Awareness Day.  May 12.

MORE THAN A FEELING

Am I more than this illness?

There are days I'm not sure.

This is one of them.

Who was I before chronic illness? I know there were definite parts of my personality that have disappeared. I try hard to separate the two because it has been so long that I'm not really sure how to do it anymore. 

So who am I?

I'm still a cynic. I don't think that part of me will ever go away and I wouldn't want it to. That part of me keeps fighting the doctors who want me to just slug down a few pills and go away. The cynic that hates the invisibility and yet embraces it. The cynic that questions every thing and every one. The cynic that continues to look at this mysterious illness and that knows something is missing. 

Well, funding and research is missing but then again, when won't a few hundreds help anything?

Talking about hundreds, I'm a great shopper. That part of me probably won't change either. There is something so comforting about shopping. I don't care whether it's a grocery store, vitamin store or Nordstroms. Well, let me take that back. I do care whether it's Nordstroms because aside from Costco that is my favorite store. I remember the shoe sales with such fondness. Their anniversary sale is my favorite time of year.

I really don't think you can have too many shoes.

Well, at least I didn't think that. I look in my closet and remember the good old days. Days when I could throw on real high heels and run in them. I look at shoes with high platforms and remember the 70's. Remember those shoes? History really does repeat itself. I look at jeans with tears in the knees and laugh. Just looking at some of the clothing is crazy. 


Let's go back to the cynic. My sense of "snark" would come out constantly but frustration still takes over. I didn't have a lot of patience with stupidity before..... let alone now. My own stupidity makes it even worse. I get very frustrated with the fog. I hate it that I have to reread almost everything to make sure I'm getting it right. Even then, I'm not sure that I am. 


I want to think of myself as the same healthy woman that ran around with 4 inch heels. I'm still a computer geek who rubs her hands when I've been too long on the computer. I'm still a photography, movie and music buff. I'm a reader that finds it's a little tough to remember what I've just read. Most of all, I've had a tough time accepting that this is chronic. There are days that I look in the mirror and "I get it" and there are days that I don't. I run hot and cold and I swing to both ends of the spectrum. I guess what I'm trying to say is that I don't know who I am without Fibromyalgia. It sneaks into every part of my life. I don't try to let it but it does. 


Because the fatigue affects what I can or can't do for the day it has pushed its way in to my hobbies and career. Because the pain is ever-present on some level every day it has pushed its way in to the things that I love to do. For example, I found that Fibromyalgia had pushed its way into holiday cooking. I have paid for the desire to push past the pain and cook a holiday dinner. 


No matter what I say or do the pain and fatigue are the twins that want to accompany me in everything that I love to do or be. 


I can ignore them but like a two year old, the twins tug at my sleeves to let me know that they want attention.....AND THEY WANT IT NOW.


I just especially love it when the twins throw a doozy of a temper tantrum and refuse to stop until I give in and let them have their way.


So I'm still "me" with everything that I love to do with a healthy dose of Fibro thrown in for good measure.


Snarky, impatient, little old me.




**I forgot to add that this will be part of the blog carnival. Diana Lee at Somebody Heal Me graciously hosted this. Please stop by her blog and like her page on Facebook.

ZIP A DEE DOO DAH

How do I love thee?

Let me count the ways.

Then I'll use duct tape on your mouth.

I know that people try to be helpful. I also know that it's real tough to explain an illness that is invisible. So in the interest of our sanity and interaction that doesn't set us on edge......here goes.

What not to say.

There are articles about "what not to say." They are pretty thorough but I like to add a few comments as well.

1.  You don't look sick. No, I don't look sick. If I looked like I felt I would scare little children and most dogs. I know that to be sick I have to look sick but that's not the way it works. We try very hard to keep it together but thank you so much for reminding me that I have to look sick to be taken seriously.

2.  If you exercised, you'd feel better.  I think this is one of my favorites. I think it's especially attractive to crawl into the gym. It's also kind of fun to fall asleep on the treadmill and to feel like roadkill after mild exercise. Of course, I'd be remiss if I didn't mention that we can't crawl out of bed the next day because we're in so much pain from that glorious exercise that you are so kind to mention.

3.  Everybody gets tired.  Yes, they do, poor things. This is like someone pulling the plug on your energy reserves. We love being so bone weary that we can't move. Also, thank you for mentioning this one and reminding me that a lot of the medical community thinks we're either lazy or crazy. 

4.  You'd feel better if you had a better attitude.  Really? I thought I had a great attitude all things considered. If my attitude reflected how I felt inside it just might kill you.

5.  It can't be that bad.  Thank you Lyrica for making Fibromyalgia seem like a pesky little fly that you can flick off of your shoulder. In the same vein and the spirit of the previous comment I will just take a baseball bat and beat the crap out of your body and then tell me that it can't be that bad.

6.  I wish I didn't have to work and could nap all day.  Oh yes, we're little princesses lying about eating bon-bons all day. We love the fact that our career has gone down the toilet and along with that swirl of water in the toilet, our finances are going down the toilet as well.

7.  We all get aches and pains.  It's difficult to even write about this one. Again, people are sometimes under the impression that we feel like the aging grandparents in the movies. "Rheumatism." Just sit on a heating pad and in our rocking chairs. Yeah, right. Don't they get that sometimes just a simple touch will cause excruciating pain?  Maybe I should turn them into a voodoo doll.......would they get it then?

8.  Fibromyalgia isn't even real.  I wish it wasn't. I also just love it when doctors don't believe it. That would scare me because it tells me that they haven't kept up on the latest research. Plus, I'm almost positive that the FDA approves medicines for fictitious diseases. We're not whiners or neurotic so please don't add insult to injury or, in this case, stupidity.

9.  You should try to sleep at night.  We'd love to sleep. Even when we take medication there are times that we will wake up anyway. We are prevented from getting deep, restorative sleep so that our body can repair itself and wake up somewhat refreshed. We also love watching the minutes turn into hours in the middle of the night. Usually when we grab a magazine it's telling us the steps to get restful sleep. Don't even get me started on that one.

10.  Oh, come on......toughen up.  If you think Fibromyalgia is for sissies, think again. If you only knew how tough we really are.....

11.  It's all in your head.  Well, when we get this comment we can, at least, say it's a true statement. Yes, it is all in our heads. This is an illness of the central nervous system. Thank you, however, for saying it in a sarcastic and condescending manner. I, however, love shoving those words right back at you.

This is not an illness that an aspirin will fix. If it were that simple we'd all have stock in Bayer. We would also be chugging them down. Most of us hate what this has done to our lives and we look desperately for a way to reinvent ourselves and ways to feel better so we feel somewhat productive.

By the way,

We have tried every snake oil cure out there in hopes of feeling better.

But thanks for letting us know that eating different foods will cure Fibromyalgia.

Where's that duct tape??

I HEAR THE TRAIN COMING

Just when I thought that I saw,

the light at the end of the tunnel,

I found out that there was a train 

coming at me full speed.

I'm starting to get back to normal and just as I was starting to feel pretty good, it decided to get cold and rain. Then to top it all off I have a lovely little bladder infection. Now, I've heard that this is fairly common with Fibromyalgia but its been years since I've had one. 

I can tell you that it hurts. 

A lot.
That part I'd forgotten.

I was going to go with my girlfriend to see the Monet exhibition at the Bellagio but instead, I went  to the doctor. Still, I'm pretty impressed with myself because I'm in bed with a fever and I'm still writing. She came in the room and asked how bad I felt. Evidently, the infection was pretty severe and if I'd put it off any longer I would have had a real problem.

If I sound incoherent, blame it on the fever.

To top it all off next week I'm having epidural injections. I am not looking forward to those at all. This is the first time that I've had this doctor do this procedure and I'm a little nervous. All I can imagine is hearing "oops." Whenever I have something done, that's the first thing that goes through my head. Why do I always imagine the mistakes? I imagine the worst because we're dealing with the spine.The spine is definitely not the place to go oops. I'm pretty sure he's competent....it's just my nerves kicking in. 


Anyway, back to the bladder infection. I didn't realize that it was just another lovely symptom of Fibromyalgia. Is there anything that isn't a symptom??


I'm serious.


Let's see...........forget the obvious.......muscle pain, fatigue and the ever present fog. There is the sensory overload. Sensitivity to smells, light and noise. Bruising, hair loss and lipoma's. There is also nose bleeds, hemorrhoids, mottled skin, ingrown hairs and splitting cuticles. Let's not forget IBS, pelvic pain, abdominal cramps, urinary frequency. Poor balance and the inability to distinguish colors. Also, there is the tendency to have excessive sweating. Vision problems and headaches or migraines. Weight gain or weight loss and the carb and chocolate cravings. Urinary tract infections also run rampant in our bodies.


Let's not forget that we also cry at the drop of a hat.


With that list of symptoms along with the well known ones, is it any wonder that we cry? I cried just writing them. I mean it, is there anything that isn't a symptom? 


So just as I started feeling a little better about the move I got hit with this lovely infection. 


And I've just added more medications to the list of things I'm already taking.


Well, this gives me more time in bed.


I still need to answer those emails!


Did I ever really need an excuse?

MONOPOLY DAYS AND NIGHTS

Moving and Fibromyalgia.

Do not pass go.

Do not collect 200.00
Fibro jail, here I come.

I've gone through a whole house that I've lived in seventeen years. I've purged (some, not enough) and I've thrown (again, some.....not enough) and I've boxed. I really hate moving and I especially hated this move. 

But I'll get over it.

I finally got my bed moved and last night I had enough. I couldn't do one more thing. I've pushed my body to its limit and it was too much. There is something about stress and how it affects your body. When Fibromyalgia is involved, however, all bets are off. You cannot do this without stopping to decompress. 

The problem is that I have very high standards for myself. My personality has really shown through during this move. I've become very pissy and I wanted things done. Did I also mention that I wanted it done yesterday and preferably in alphabetical order? Oh, come on.....who the hell puts moving boxes in alphabetical order?

Me.

Is that ridiculous or what?

The other thing this move has done is that I'm very unsettled. I don't like change that much and this change has been a doozy. I know that I need to look at this as moving forward but I can't get there yet. I can say it in my head but it hasn't reached down into my heart yet. Plus, there are little things that are tough to get used to. First of all, get this.......I have to get up in the morning and walk my little baby dog. He's had a doggie door and now I have to put on his leash and venture out for a morning walk. Now, I'm not a morning person and this dog definitely is. His little fanny wags in excitement for the opportunity to go outdoors and do his thing. I mean, I wouldn't like it if he stood in front of the bathroom door and made me wait but moving first thing isn't my strong suit. It's such a little thing to make him happy but........

My body has slammed me against the wall and shouted, "STOP!"

I better listen to it.

Because this time it's not kidding.

Maybe I'll feel better when I get cable.............

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.