A NEW YEAR

"It's a new dawn.

It's a new day.

It's a new life."

(lyrics by Nina Simone)

For many of us 2010 wasn't a real good year. Economic issues, health issues and forced many of us to live facing things we never thought we would face. All of those issues seem small and trivial compared to the story I'm going to tell you now.

I got an email from my friend George last night. He was telling me that he was in a severe crash and then wrote me that he was on a site and noticed a blog called "IN HUGE TROUBLE." He usually doesn't take the time to read those blogs but he read this one.

Im sorry guys and i feel guilty to dump this onto you but i dont even know why im doing this.. but if i die.. i want to be put down to a CFS/ME death.. this illness has screwed me up completely. The lack of testing in Australia for XMRV hasnt got me down at all but if their was some testing, I'd probalby be on drugs for the CFS/ME.

Ive taken a BIG drug overdose trying to kill myself as I dont have a life (cant even always do my own shopping.. risk of collapses as I do collapse but doctors dont worry and dont treat my POTS). Thou my CFS/ME is no where near as bad as it used to be.. I have so many issues in my life and sure my brain my be affected too (unless its reactivating CMV i have) that I want to die..

If anyone reads this.. you probably should ring an ambulance and send it to  XXXXXXXXXXXXXXXXXXXX  South Australia .. Its probably too late to pump my stomache and Ive taken 100 pills and have more Im still taking as I just want peace.. peace for all not understanding people put me throu and peace from this illness..

Luv you guys.. 

Ps if i end up okay I'll mail (my name is XXXXXX.. so light a candle for me please if I die as Im sick of 14 yrs of severe illness and doctors not doing enough.. and not allowing me to try things which may help. or POTS treatments.   

There is a good ending to this story. He tracked down the number for the police station and got this woman help. She's now recovering in the hospital. Thank goodness that she reached out before it was too late and thank goodness that there was an angel called George.

We have an illness that has the ability to play with our mind. Living in chronic pain can bring depression and we have to fight against that every day. To me, there is a huge difference between going through the grieving process for the life we used to have and depression. 

We are grieving for the life we used to have and I think that's normal. Being told that you have an illness for which there is no cure is shattering. While it's not life threatening it is certainly life changing. Our bodies, the one thing we thought we could count on is betraying us. Is it any wonder that we don't know how to react?

We are more than our illness and we need to be our own advocate. We need to protect ourselves and we need to learn how to accept help from others. We cannot live in isolation because that isolation will play with us. It is the seduction that depression uses to lure us into that dark place and it's easy to go there. Probably one of the best posts I've ever read on the seduction of depression is by Maryn Christophel called "Whisper Me Softly."  I'll admit that I've read it over and over again. 

I never want to cross that line.

I've said this before. We must always stay vigilant and remember that the seduction of depression is a lie. It will tell us that this fight isn't worth it and it will whisper that to us every single day. 

This life is worth it.

Our fight is worth it.

If there is one person that has trouble believing that then we need to reach out and be there for them. This is really tough to handle without support. We have so many people that don't believe what we have is real. Or countries that handle CFS/ME and Fibromyalgia as a mental disorder and makes it difficult to get help.  We need to re-define ourselves and find a new standard for doing so. We can't define ourselves by what we used to do or be. 

I pray for each of us that 2011 brings relief. I pray it brings relief from the physical pain that we endure and for comfort from its sister, emotional pain. 

I pray that we find our dreams and reach for them while being mindful that we need to keep our feet firmly planted on solid ground.

I pray that we all are a little kinder to ourselves.

THINNING THE HERD

I've never been big on the rah-rah stuff.

I'm still not.
I just want to be out standing in my field.

I've always disliked going to motivational speakers. When I was selling homes it never failed; about once a year they'd have some yay-hoo come in to pitch about attitude and then sell the tickets to his "show." I'd be the one in the back with my arms crossed listening to the crap they'd spill and waiting for the subject of money to come up.

It always did.


I do believe that attitude can help or hinder just about everything in your life. It can push us beyond "the can't." I understand that. Having said that, however, I do not believe that attitude can cure Fibromyalgia. I believe it can definitely help with the management but I don't believe it can cure. Wouldn't it be nice if it does? We could sprinkle fairy dust and, voila! Now it seems that we are bombarded by Fibromyalgia and Chronic Fatigue motivational speakers. If we just improve our attitude then our symptoms will go away. 


It makes us sound like we are the masters of our own demise.


I just read an article called  Mindfulness Therapy No Help in Fibromyalgia Trial. It seems that the use of yoga and mindfulness therapy doesn't help the pain. 


Really?
Ya think?


Where do they get these people? How did they round up 177 people? We can't find anyone to agree on anything concerning Chronic Fatigue and Fibromyalgia let alone how to manage it. What I find reprehensible is that they still make reference to depression and how people with Fibromyalgia aren't in touch with their own emotions or how to manage those emotions.


That really pisses me off. 
See how in touch I am with my emotions? 


There are many people with Chronic Fatigue and Fibromyalgia that can pinpoint the onset of their symptoms to major physical or emotional trauma or an episode with an illness. It seems that we've been dismissed because it couldn't possibly have started in this way.


HOWEVER........for just 29.95..................


If we change our diet we can be cured! JUST buy the book. There are tons of nutritional supplements out there and if we'd just take them we'd be cured. Everyone has the answer but somewhere they always manage to place the fault of Chronic Fatigue and Fibromyalgia squarely on our shoulders. Somehow we have trouble with our emotions, depression, vitamin deficiencies, marital problems, childhood issues, abuse problems, diet problems and a myriad of other issues that we can't control. 


What is it going to take to get proper research? Just take the information released about the XMRV retrovirus. It seems that everyone wants to disparage the little research that has been done. Why are Fibromyalgia and Chronic Fatigue such a hotbed of controversy? With the numbers of people being affected increasing, why can't we get research and funding?


If someone really famous had this disease and watched their career go down the toilet, I bet then something would be done.


The people that have had their lives decimated by these illnesses are becoming increasingly vocal. We don't want to live this way. We don't want to watch our lives go by and live it on the sidelines. We don't want to be dependent on anyone else. We would love to have our life and careers back. 


I think no one in our society is allowed to be tired or sick. It's weak. We're supposed to just suck it up and multi-task our little stressful lives to the fullest. We're supposed to be tough and push through pain and fatigue. It's not too much to ask is it? Life is supposed to be lived at Mach two with our hair on fire.  If we can't do that we're a burden and a weak sister. 


That's what we are.


Weak.


Just cut us from the herd.

BATH BOMBS

My daughter knows me so well.

Her gifts are always so unique and fun.

This year, she REALLY nailed it.

Introducing the bath bomb.

It's cloudy and the humidity is still at 56%. I say still because I checked it around 3 last night and it was 74%. I couldn't figure out why I hurt so bad and I decided to check the weather forecast.

Bad move.

I had Christmas Eve at the outlaws, as I love to call them, and made it through that fairly well. As we drove home I knew it was going to be a very long night. I could feel the tightening in the muscles so instead of getting in the tub when I got home, I just got in bed.  My daughter had given me the most beautiful smelling bath bombs and I really wanted to try them but I skipped the bath and just got in bed and tried to close my eyes.

Stupid move.

When I woke up Christmas morning all I wanted to do was stay in bed and put the covers over my head. That isn't a good sign. Usually I love presents but, this morning,  it even hurt to unwrap those. I cannot EVEN believe that I just said that! 

Me?

Not want to unwrap gifts?

Something is very, very wrong if that happens.

Let me tell you about the bath bombs. There is a store called Basin White in the Venetian Hotel. Thank goodness this hotel is on the Strip and far away from me because I'd probably spend my last dollar in there! These balls of fragrance, oils and sodium bicarbonate are like giant Fizzies for the tub. They are relaxing and smell UNREAL! It dissolves quickly in the water so you don't have to deal with salt crystals on the bottom of the tub. I didn't try one Christmas Eve but I did last night. She bought 7 of them for me and I'm certain I'll go through the rest of them before the week is out.

Oh, no!!!!!!!! 

I have a new obsession.

Great, just what I need.....

I've had all sorts of new obsessions. That's what we call little goofy gifts that I buy in quantity. There were the Yip Yaps, Blender Balls, Dental Dots. You name it, I'll find it. So now I have Bath bombs to add to the list. Next year, thanks to my daughter, EVERYONE will have a bath bomb in their stocking.

It may go over a little better than the Dental Dots...............

EMBRACING THE BEAST

It's been raining for the last couple of days.
That means the pain has been with me.
My constant friend.  
My unwanted companion.

I got up early this morning after tossing and turning most of the night. My daughter, son-in-law (almost) and I went to church so they could view the pastor that they wanted to officiate their  wedding  ceremony. The chairs weren't real comfortable and I still find it hard to sit for any length of time. I must have looked weird squirming in my chair for the hour and a half. To top it off I wasn't sitting at the end so I could get up and move around. The good part is that the choir singing Christmas carols was beautiful and inspiring. The bad part is by the time I was able to get up and move around I was in real pain.

In the midst of aching, debilitating pain it's tough to dig down deep and find that tiny spark of faith. The good thing was that I was in the perfect place to find it. I had my family and one of my best friends with me. I still struggle with the idea that this is a permanent way of life and I still don't like it. I have all kinds of feelings today but the one I didn't expect to find and did was peace. 

I understand that things will not always be what I want them to be. Just because I ask for something doesn't always mean that I'm going to get it. Maybe that's it. Maybe, just maybe there are times when I shouldn't get all I ask for. It's called unanswered prayers. Maybe, sometimes  the best answer is no.

I've struggled all week to find the strength to write. It's been difficult to move my hands and I understand how easy it would be to tape pencils to my fingers so that they wouldn't have to touch the keyboard. I have this stubborn streak in me so I'm just taking my time and slowly hitting the keys so that I can handle the pain that simple act causes. I forget what it's like to be completely free of pain. I don't think I'd ever take that for granted again. 

I used to love the rainy, foggy days. Just going out doors and seeing the white clouds draped over the mountains was awe inspiring. I could feel the mist on my face and I loved it. I'd walk in the cool, damp weather and it would feel wonderful. I'd grab my camera and drive close to the mountains to get some shots of the clouds. I loved those days. Now, the only thing that the humidity and rain cause is fear. I know how I'm going to feel and I have to get ramped up to get through those days. I guess that you don't know what you've lost until you've lost it.

I also used to love Christmas. I say used to and that isn't accurate. I still love it but I'm a little bitter that my career has been taken from me and with it my ability to earn a pretty good living. Part of the joy of the season is buying gifts. I had so much fun going from mall to mall picking out just the right present for the people I love. I have a hard time with the fact that I no longer have the energy to do that and I also don't have the funds. I know the reason for the season isn't the gifts but I really enjoy that. I enjoy burning the candle at both ends between the gift shopping and the holiday baking. Well, zippo on that too. I need to stop beating myself up with things I can't change. I really need to stop. I have battles to fight and I can't win them all so I need to put them on a priority basis. In other words, I need to pick my battles.

So as the holiday season approaches I'm going to stop asking for the pain to go away. I want my joy back.

What I'm going to ask for instead is to make me stronger than the pain.

(well, a trunk full of hundreds wouldn't be bad either...)

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.