THROWBACK THURSDAY. ZIP-A-DEE-DOO-DAH!

Sometimes people think they are helping.

They offer advice.

Others think we are wimpy.

Zip it.

So in the interest of those with Fibromyalgia and/or Chronic Fatigue, I offer these suggestions.

Please do not say:

1. You don't look sick.
No, I don't look sick. If I looked like I felt I'd scare dogs and little children but thanks for telling me that I should look sick if I want to be taken seriously.

2. You should exercise more - you'd feel better.
I guess it would be o.k. if I fell asleep on the treadmill. I especially like it the next day when I can't move any part of my body due to the pain of the glorious exercise I did the day before.

3. Everybody gets tired.
Yes, everyone does get tired. Again, thanks for reminding me that you and a lot of the medical community thinks we're crazy. Just for a point of information when we rest, we don't wake up refreshed.

4. You just need to have a better attitude.
Gee, I thought I did have a good attitude. If my attitude reflected the pain it might kill you.

5. It can't be that bad.
In the same vein no, it can't be that bad. I'll just take a baseball bat and beat the crap out of you and see how you feel the next day. Live like that for years and then tell me it can't be that bad.

6. I wish I had time to take a nap too.
Yep, I'm just a whining little princess who naps and eats bon-bon's all day and pretends to be sick.

7. If you'd just get out more.
I love being locked in my ivory tower. I definitely should get out more. That makes me feel SO much better now.

8. You're just depressed.
Well, what tipped you off to that one? If you live with chronic pain and fatigue don't you think you might get a tad depressed?

9. Oh come on, just get tough.
If you only knew how tough we really are to function and deal with this illness.

and my favorite...................

10. It's all in your head.
People have had enough of the medical community making us think we're crazy. We have to go from doctor to doctor until someone believes us when we say we're sick. We've put up with so many people thinking we're either whiners or neurotics  please don't add insult to injury.

Thanks for listening.


Just as a little aside.....

It is all in our head......

It's called a central nervous system dysfunction.

YOU CAN'T SEE ME

I'm smiling.

What else can you see?

Probably nothing.

Because you can't see past it.

I wrote this a few years ago. It was true then and it's true now. 

I should probably not complain that I'm living with an invisible illness. As much as I hate it, I also help perpetuate the term invisible. I don't usually let people see past the smile because they'll see the real me and I hate appearing weak. I also don't want them to see what I deal with. It's a double edged sword. It's an invisible illness because you can look absolutely perfect while hiding a great deal of pain and it's also invisible because we don't want people to judge us. We get enough of that from doctors, we are afraid we'll also get it from everyone else.

What you don't see is the pain that starts the minute I open my eyes. I know what is going to happen the minute I put my feet on the ground. It's a pain that makes me want to revert to crawling instead of walking. I limp toward the kitchen to make my coffee or tea, whatever my mood is that morning. Mornings are usually pain-filled so I can tell you the mood isn't real perky. This pain continues throughout the day in varying degrees. The nights are the worst. I spend a lot of time in the bath. After that it's in bed.

This all started after a nasty car accident in 2008. I was at a full stop and a truck hit me going approximately 25-30 miles an hour. Now, I'm not the type to whine so I was more annoyed than anything else. When the man came up to me and asked me if I was okay, I said I didn't know. That was the truth. As I sat there it felt like an electric current was running through my body. I shrugged it off because I had things to do. I went through the rest of the year wondering what was happening to me? My back hurt, my body hurt and my memory was fading. Finally, after a year I finally had to stop working at my usual frantic pace and find out what damage was done. I never realized it would be life changing.

One of the biggest adjustments I had to make, and I'm still making, is knowing my limitations. I've said it before and I'll say it again. I've never liked limitations. It doesn't matter if it's mental challenges, food or speed limits. You notice that physical limitations was not on that list. Nope, it wouldn't be. I've always gone at mach one with my hair on fire and having to learn the cardinal rule of chronic illness has been difficult for me. If you push you will pay. When I have a good day, which isn't often, I tend to make the most of it. I know, not good. You'd think I'd be getting the hang of it by now, but I haven't. I still hate what my body has done to me.

I found my voice in blogging which is weird because I'm not real open with people. I've always been outgoing but very few ever got to see the "real" me. I am friendly, approachable and empathetic but not in reverse. Then I started to blog and was able to communicate on a truly different and surprising level. It wasn't scary to have people be able to see into my soul and that has helped me open up in so many areas of my life. I tend to isolate myself because of the pain and with that isolation I've left many friends and family by the wayside. I've been able to communicate about the pain and depression. Again many things surprise me. I've also learned about people that suck the life out of your soul and cut them out. I have too many other things to deal with so they just had to go!

The other adjustment I've had to make is in the area of control. I've always like to control the environment around me. That's a huge part of my personality. I've always felt that if I can control things then I won't get any nasty surprises. Well, I didn't say that it worked I just said I liked to operate that way! I've had to accept that I won't know what I'm dealing with regarding my body on a day to day basis. That means I can plan but plans may change. I've had to let go and that isn't easy for me.  So many things haven't been easy and I've had a hard time dealing with that. Fibromyalgia, and any chronic illness for that matter, wreaks havoc. I don't care whether it's physical, emotional or financial. It trips a domino in your life that starts with chaos and mayhem in your physical body and continues on until it messes you up emotionally. Then it loves to cause real damage when your financial life you had goes out the window. I know it's something I have to learn to accept but it's that darn little word called control. I don't have it and it makes me crazy.

So it's 3 a.m. and it's another night of robbed sleep. I will try to close my eyes but I don't have high hopes. I've taken the muscle relaxers and pain medication but my muscles are still not paying attention to the fact that they're supposed to calm down. I'll end this post and turn off the lights and hope beyond hope for a few hours of sleep.

I really need to learn about limitations 
Just don't apply them to speed limits.

It's Invisible Illness Awareness week.

THE SUGAR DELETION EXPERIMENTATION PROJECT

Sugar.

Sweet.

Addicting.

Crack.

I have to say that sugar is my drug of choice. I love it. I can't have too much otherwise I go into a hypoglycemic sugar crash that is terrible. There are certain things that set it off. If I would have a regular soda......the sugar glaze that is on ham......cotton candy. Definitely not good.

Then there is the gray area.

Lemon Oreos fall under this category. So does cake without a ton of icing. M&M's, Lancaster caramels and sour gummy bears. For some reason I can have these without going into a severe crash. I have no idea why. 

Here's the funny thing. I'm a food snob. I love fresh, good food. I rarely go out to dinner and if I do it better be a great restaurant. I love to cook so if I can make it better......I'd rather. My dream is Masterchef but I don't have the presentation or knife skills.

BUT.

I DIGRESS.

Food is one thing and sugar is DEFINITELY another. You'd think I'd kick it to the curb but it took one lovely lady to help me do it. Her name is Judith Westerfield and she writes a blog called Curious to the Max. I had written a post and she had commented on how bad she'd been feeling and that she was ready to kick sugar.

Was I in?

I have to admit that apprehensive wasn't even close. 

I was making a commitment and I'm a commitmentphobe. It's like taking a medicine long term. I probably wont. Anyway, knowing that it was time and that I should......I agreed. She even posted it on her blog so I was all in.

Day 1-3 I was beyond snarly. Now, let me come clean. I didn't count sugar free stuff in this little venture. My coffee has sweet and low, a sugar free vanilla powder. That and a diet coke is my caffeine hit for the morning. It doesn't count any little bit that I use in dressings or food. I gave up my nightly ritual of Oreos and sour gummy bears.

I don't usually have THAT much sugar.....(ok.....I do but I don't think I do). Again, I use a little in cooking at times and everything else is sugar free.

Oh, I forgot. 

I love ice cream.

Good ice cream.

Like McConnell's salted caramel chip.

Anyway, I gave that up too.

So.......here I am missing desperately my sugar. You'd think I'd mean a person but.....no....

You must ready Ms. Westerfields blog about the sugar shun.

She says it much better than I do.

I gave in and had my ice cream last night.......

But, hey.........

no Oreos!!

Here's the link and while you're there check out Freddie Parker CDT. (canine dog therapist)

Thanks Ms. Judith........

I'm getting there!

http://judithwesterfield.com/2014/09/06/sugar-shun-parenthetically-yours-8-steps-to-kick-sugar-cravings-to-the-curb-ouch/

OK....SO WHAT DOES HELP...AND OTHER NONSENSE

So, if all that doesn't help...

What does help?
A wave of the magic wand.

I went through all the things that are supposed to help but don't; so, I guess I should write about things that might help

Maybe.

Kinda.

Sorta.

Point number 1: Don't call your doctor.

Most doctors will just tell you it's all in your head anyway. If your doctor doesn't believe in Fibromyalgia, it will just make it worse. (if you're in need of medical help ALWAYS call your doctor! Sarcasm, sarcasm, sarcasm.)

Point number 2: Get in bed.

Notice I didn't say get some sleep. We can try all we want but usually deep sleep doesn't come easy, however, sometimes getting in bed can feel heavenly. 

Point number 3: Don't feel guilty if you take medication.
Social Media is tough. Sometimes we are made to feel that if we take opiates we are some kind of addict or that we should be able to tough it out. Everyone has that point and it can be needed to function. If you take medication; please, don't feel guilty. If you don't need to take medication please be kind to those that do.

Point number 4: Get in the water.
Notice I didn't say shower. A wonderful lady I know pointed out an article that discusses this very subject. I always dreaded the shower on those icky days. The water would HURT. Evidently, this isn't unusual. Feeling weightless in a pool, hot tub or even the bathtub can do wonders. Plus, Dr. Frank Rice is doing research on AV shunts in our hands. People with Fibromyalgia tend to have many more of them. These also regulate internal body temperature (maybe why we are so intolerant to temperature extremes). They are influenced by estrogen which could be why more women get Fibromyalgia. 

Point number 5: Try to stay positive.
This is a tough one for me. I'm definitely NOT Little Mary Sunshine. One of my favorite sayings in the world is, "when you see the light at the end of the tunnel.....it's probably the train coming at you full speed." Hey, what do I know? Do as I say...not as I do???  I admit it. I'm the glass is half empty sort of person.

Now, if I'm REALLY being honest?

What helps when it gets real bad?

Take a bath....

Take my muscle relaxers and pain medication.

Hope they take the edge off.

Kinda.
Maybe.
Sorta.

Shuffle off to the bedroom.

Get in bed.

Turn on the TV.

Pray I go to sleep.

Pray tomorrow will be better.

.

THE ROADKILL COMPARISON

I don't know why.

Lately, I've been tired.

Roadkill tired.

Fortunately, I haven't had a ton of pain to go along with the fatigue but the fatigue has been off the charts. I wake up and within a couple of hours I'm yawning and having a tough time holding my eyes open.

So I go back to bed.

It feels like someone just let the air out of the balloon. Roadkill. I want to get in the bath but I'm just too tired to do it. I'm also afraid that I'd fall asleep in there. So I'm looking at articles.

Let's see what the experts say......

Point number 1: See your doctor.

I've met a number of people who have chronic illnesses. Most of them will say the same thing I do. I've got the doctor on speed dial. I don't think seeing my doctor any more than I already do will help anything....short of having him move in with me. I think he's sick of seeing me.

Point number 2: Get enough sleep.

I hate to be pissy at this point but one of the markers of a chronic illness is those ever pesky sleep disturbances. Get enough sleep? Sometimes that's all we do. It's not the number of hours that will restore our bodies and souls. It is that we don't descend into full REM sleep. Some of us take enough medication to knock out a horse but sometimes that isn't even enough to keep us asleep.

Point number 3: Aim for more refreshing sleep.

All I can say is WTF? Go to bed earlier so I can wake up earlier? Huh? Don't watch TV in bed. Yeah, right. Good, I can lie there all night and look up at the ceiling. Plan your evenings carefully. Who came up with this stuff? All I can say is, "geez, the sixties were good to you."

Point number 4: Exercise for energy and to help you sleep.

This just keeps getting better and better. Now, I'm not saying that we shouldn't move. It's vitally important. It's just the picture of the woman in this article is just plain annoying. There isn't one clue on her face that gives the reader any clue that she's in debilitating pain and/or fatigue. Did you know that you shouldn't exercise late in the evening because it may interfere with sleep? REALLY?????

Point number 5: Eat well to fight fatigue.

I hate to be a buzzkill here but I can eat a nutritionally balanced diet and it has no effect on the fatigue. Moderation in all things is important but a blanket statement like this means nothing. Sometimes a little ice cream helps the mood!

Point number 6: Step into the sunlight.

This brings to light (excuse the pun) the value of sunlight and the ability to reset our internal clocks. Again, I hate to be Debbie Downer but our body clocks are totally screwed up. Stepping out into the sunlight isn't going to reset it. We need the Vitamin D but I don't think this will help in the fatigue department. Plus, if you live in the desert.....well, you get the idea. Going outside when it's 115 isn't a good idea.

Point number 7: Maintain a healthy weight.

I'd love this one. This has been the bane of my existence since I got sick. I can eat 1200 cals or less and zippo. Nothing comes off. Anyone else have trouble with this?

Point number 8: Manage stress to fight fatigue.

I totally agree with this one. Stress is a killer. The problem with theses invisible illnesses is that there is fallout. There is a huge economic fallout that accompanies chronic illness. It's disabling and as hard as we try to keep some sort of normalcy it hugely impacts your ability to make a living. If your career was a high stress environment you have absolutely no chance of being able to continue.There's relationship fallout. Whether it be from spousal, partner, familial or friends....everything and everybody is affected. People don't understand and take it personally. Stress???? 

Point number 9: Aromatherapy

I do like this one. I know there are people that are sensitive to smells and odors but if it smells good to me, I can deal with it. I love lavender and vanilla and use it on my body and pillows before bedtime. I don't know if it helps but I do like it.

Point number 10: Be good to yourself.

There is a lot of guilt and problems that go with chronic illness. We do need to be good to ourselves. This will be with us until there is a cure so we shouldn't be too hard on ourselves. 

Now that I've done this.....

I'm tired......

Going back to bed..........

Will I sleep?

That's anyone's guess.

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)

FIBROMYALGIA AND THE CIDP THEORY

What is CIDP?

Why should we care?

In 2008 there was a small study that found that there was a subset of Fibromyalgia that was found to have chronic inflammatory demyelinating polyneuropathy. Basically, this is an immune disorder of the peripheral nervous system.

OK.....so what?

Fast forward to 2014. The follow up study also discovered high indicators of small fiber neuropathy in the legs of people with Fibromyalgia. If you've been diagnosed with Fibro and also have nerve pain, numbness or a tingling sensation in your hands, feet, toes, fingers, legs and/or arms, it's a possibility that you might have either small fiber neuropathy or the chronic inflammatory demyelinating polyneuropathy. Now CIDP is diagnosed by a thorough neurological examination, blood tests, nerve conduction and other test that leads to a final diagnosis. 

What this does bring to mind is autoimmunity. 

It also brings to mind subsets.

This brings Fibromyalgia squarely into the field of an immune-mediated neurological disorder.

Having said that where does autoimmunity come into play? If this truly is a subset of Fibro it's a little scary. This sounds like it could be related to MS. The symptoms have always been close. There are flares and remissions. This isn't new. This has been floating around for quite some time. 

Now with the advents of research into this and AV shunts in the hands by Dr. Frank Rice it sounds like they're getting closer to a cause and it sounds like we have damaged nerves. 

I think more research needs to be done in this area. Speaking of, I'm getting nerve conduction tests done. I'm anxious to see what comes of it.

The treatment that is used is intravenous immunoglobulin (IVIg). There are side effects from this treatment which include headache, muscle aches, fever, chest pain. The trouble with a lot of treatments is that the side effects sound a lot like the symptoms we experience with the Fibromyalgia, however, the treatment did help the symptoms in the study. 

The immunoglobulin treatment is basically borrowing a healthy persons immune system.

Borrow?

Screw that.

If it works I won't borrow it.

I'll keep it.