Friday, July 30, 2010

Living with Someone Who Has Fibromyalgia

Living with someone who has Fibromyalgia: a fate worse than Fibro?

  1. Is it okay to still participate in activities and sports that you used to do together?
  2. Can you accept invitations to get-togethers and activities that were for just the two of you, for ones that are for the whole family?
  3. Can you still have your standing Saturday morning golf game, followed by lunch with the guys?
  4. Is it okay to be upset that the house looks like hell and you haven't had a decent meal in, you can't remember when?
  5. Is it alright to be mad when you work outside all day Saturday doing all the yard work and you come inside and find your chronically ill spouse laying on the couch watching TV--AGAIN?
  6. Can you ever think or feel anything, ever again, without feeling guilty?

Well of course the answer to all of these is ---well, we all know what we want the answer to be. And, believe it or not your chronically ill spouse would agree with you---she wants to agree with you. She wants you to do to all the things you used to do, all the things you want to do. But, she wants to do them, too!

So there is a tug of envy and jealousy. There is some button pushing. There is some martyrdom. There is some lip quivering. But, honestly and truly she wants you to go, she understands why you're mad. All of that stuff is because she is mad at her disease. She is tired of always hurting and being tired. She is sad that she can't come with you. She is sad that you can never share many of those things ever again. She is sad that she can't even do the simplest things--like clean the house, fix dinner, pull weeds.

So, you both need to keep talking. But, even more important than that, you both need to LISTEN. Listen to each other when you are talking, really listen. Try and put yourself in the other person's shoes. This is no picnic for anybody. It is excruciating -- for everyone.

Life never will be the same. But it doesn't need to be a death sentence. It doesn't need to be the end of everything your life used to be. Through the pain and through the fatigue, and through the confusion and the questions a new life can be formed, and adjusted, and re-sized. There will be tweaking along the way, new information and new symptoms and new feelings means the conversation needs to be ongoing.

There needs to be talking. There needs to be listening. There needs to be an everlasting discussion.

Monday, July 26, 2010

T I R E D Musings

Fatigue: become weakened or broken, when subjected to prolonged or repeated stress

Exhaustion: a state of extreme physical or mental tiredness or collapse

Weariness: tired, especially in having run out of strength, patience, or endurance

Lassitude: a state of weariness accompanied by listlessness or apathy

Inertia: The tendency of a physical body to oppose any force tending to move it from a position of rest or to change its uniform motion.

Broken*************Extreme Collapse******


*****Run Out Of*********FORCE...........CHANGE

F orce Change>>>>I want my life back!!!

I nertia>>>can't>>>move

B roken>>>>>Battered>>>>Beat up

R un out of>>everything--energy--fun--desire--hope--

O ppose

M ental Tiredness


A pathy

L istlessness>>>>weariness>>>>tiredness>>>loneliness

G one>>>>Life, as we know it>>>>

I t


ah well...... fibro................................... fog...............................

I am tired, oh so very tired.....can't do diddly squat....useless paper weight on the desk of life........

Monday, July 12, 2010

Its Hot as Hell

I hurt. I am r e a l l y , r e a l l y tired. I have been trying to do some research. I cannot focus. I cannot concentrate. Thank goodness for spell check. I HATE the DAMN MONSOON weather system! DAMN MONSOON weather system and NO RAIN!! I suffer for four to five months thru these DESERT MONSOONS for a lousy 5-6 inches of rain! This "SYSTEM" has been going on for about three weeks now and not a drop of rain. I take that back--we got a drop! A drop. They were dancing in the street. Well, no they weren't because it is TOO DAMN HOT to dance, in the street or elsewhere.

Don't get me wrong. I know the east coast has been sweltering. And, I know for some strange reason the east--and west--coast homes do not have central air. Yes, they are not supposed to have those extreme high temps. BUT LOOK AT THE NEWS! The last several summers they have had record breaking heat. So, home builders, landlords put in AC!

Would somebody explain to me WHY , back in "the good ol' days" people chose to settle here? I mean they are traveling across the southwest and they come upon the desert and they say to each other, "Here. Here in this melting, sweltering sand dune we will build our homes." And, then they all say "Yes! We will build here, where its hot as hell and almost never rains."

And next year I will be in New Orleans, cursing the rain. "At least in Tucson it didn't rain every single day. It was hot, but it wasn't so DAMN humid all of the time!"

You just can't please some people. Especially those that are HURTING and are WAY PAST TIRED!



Saturday, July 3, 2010

Happy 4th of July! -with thanks!

Celebrate Your Independence!

"The Smortuary"

One layer of marshmallows, a layer of Reese’s Peanut Butter Cups, another layer of marshmallows sandwiched between two S’more Pop-Tarts topped in chocolate sauce.

Just a tongue in cheek wish for you to have a Happy 4th of July!

Enjoy the family get togethers, town picnics and parades, and of course the finale of Fireworks! But, remember how we have received this independence and freedom: through the sacrifice and bravery of our armed forces and the civilians and families members who support them. Never miss the opportunity to say "Thank you" to those who risk their lives so that we may remain The Land of the Free and The Home of the Brave!

I wish you peace and maybe, just for today, freedom from pain.



Thursday, July 1, 2010

significant others

I know you love me. I know you would do just about anything to make me better. I feel guilty as hell about becoming the person I have become. I hate living it. And, I am so sorry you have been dragged into my hell as well.

There is no way I enjoy living this way every day, day in and day out, night in and night out. I hate feeling like crap everyday, all day. I can't even stand to live with myself. How do you stand to live with me? I hate saying how much I hurt. I hate saying how tired I am. I don't like listening to it, you must be going mad having to listen to it, too.

But, what is there to do? I can't lie and say I am fine. Well, I can and I do, but it hurts even more to not be able to say how I truly feel. I hate it, but the disease is who I am right now.

I know it shouldn't be that way. I know there are chronically ill people out there screaming at their computer screen: "The disease does NOT define us!" I apologize. I truly, sincerely do. But it is the way I feel right now. I have been in denial for so long--this will go away--this is not happening--this did not happen to me--this simply can Not be.

But, yes it is happening. It has happened. It is. And so I must figure this out.

To Do List:

1) Redefine self.


I am struggling to do number one. Does anyone have any pointers on how to redefine self? So many of you have done it, can you give me some ideas? I have lost touch with CJ. I have the added dilemma of becoming an empty nester. My life has centered around my family and my volunteer work. My kids are all but gone (my son will be graduating from college soon) and I cannot do any of the volunteer work I was doing. Right now my husband and I are living apart since we are in the middle of relocating. I am struggling. Who am I?

Did you know that chronic illness truly inhales profusely?


CJ, whoever she is