Sick and Tired of being Sick and Tired

[Guest guest]

Sick and Tired of being Sick and Tired. We all know we have the right to sadness, to feel the loss of chronic illness. To stay in this place is to me, like living as though I'm already dead. Well gang-- we're not. So I want to tell you all that I understand where you're at-- but I don't wish or pray that any of us stay in this place of sadness. So let's figure out some ways to deal with these losses.

Sick and Tired of being Sick and Tired. Now this is a theme we all know to well. It's also one that needs to be addressed.

Most of us have a tough time during the winter, where the seasonal SADD--Seasonal Attitudinal Depression Disorder is made worse by long dark days, and wintertime coldness.

Most of us have dealt with the disability of sarcoidosis for many years, and our spouses have dealt with it for an equal number of years.

So how do we keep our relationships strong, when we are feeling so very vulnerable?

For me, it has meant that I had to learn and continue to learn to tell my husband what I need from him. It has meant that I have to open up and explain that he still is the most important person in my life-- and that I still want him.

In all honesty, our sex life isn't what I want it to be-- I don't have the energy, and my body doesn't have the same responses that I want-- orgasms are a wonderful memory...

But that doesn't mean that I don't want him-- sexually. I do. I just don't have the energy to pursue him.

One thing I have noticed is that if we're just hanging out watching tv-- I'm sprawled out on the couch, and he's in his recliner. Hello-- sit up, and call him over to the couch. You can both sit next to each other there. Once he's there next to you, you can choose to lay down with your head in his lap. Or maybe he needs to be the one laying down with his head in your lap, while you play with his hair.

Sometimes that closeness is all it takes to reconnect--even if it's a small amount. Sure, it's not what we're dreaming of-- but it's something!

The other thing is not just in our relationships. Sometimes we need to force ourself out of bed, get a shower, pull on the sweats, and then take a nap.

sometimes we need to get on the jeans and get out of the house-- even if it's just to the mailbox.

When the depression hits-- getting outside of yourself is the most important thing you can do. If you are home alone- call a friend, and get honest-- ask them to come over and share a movie. Ask them to bring in your favorite lunch.

People want to help us. Our church families spend alot of time praying for us-- but wouldn't a visit be nice. It doesn't necessarily need to be a time to explore the Bible, it can just be friends laughing with each other.

If you can drive, go park near a kids playground. Watch the enthusiam they have for life. Step outside and listen for the geese to fly over, cackling all the way back to Canada. Check out the trees or bushes in your yard-- are they starting to bloom? Pull out the family albums and put a couple of pages together, and laugh about the joy you had.

Losing that part of yourself in that most of won't be climbing mountains or canoeing the rivers-- but we can still celebrate those times. (If you want to guilt yourself, think of those whose memories no longer hold those times-- like a soul with Alzheimers. )

What I'm saying is look around you-- see what goodness you do have. Rejoice in It!

Take a taste of that special food-- and rejoice in it!

Take a deep breath-- and rejoice in it!

Take a look at the beauty around you-- and rejoice in it!

When you fill yourself and your thoughts with the simple joys-- and allow them to be enough- you will then open your heart to bigger moments of joy!

Rejoice!

Please, I ask that each of you take a moment and share some small goodness that you've seen today. We all need ideas on how to cope.

With compassion,

Tracie

NS Co-owner/moderator

************************************** AOL now offers free email to everyone. Find out more about what's free from AOL at http://www.aol.com.

[Guest guest]

Tracie, thanks... I am trying to do better at that. Kick the beast best as I can each day. Good pep talk. I needed that. hugs S. tiodaat@... wrote: Sick and Tired of being Sick and Tired. We all know we have the right to sadness, to feel the loss of chronic illness. To stay in this place is to

me, like living as though I'm already dead. Well gang-- we're not. So I want to tell you all that I understand where you're at-- but I don't wish or pray that any of us stay in this place of sadness. So let's figure out some ways to deal with these losses.Sick and Tired of being Sick and Tired. Now this is a theme we all know to well. It's also one that needs to be addressed. Most of us have a tough time during the winter, where the seasonal SADD--Seasonal Attitudinal Depression Disorder is made worse by long dark days, and wintertime coldness. Most of us have dealt with the disability of sarcoidosis for many years, and our spouses have dealt with it for an equal number of years.So how do we keep our relationships strong, when we are feeling so very vulnerable? For me, it has meant that I had to learn and continue to learn to tell my husband what I need from him. It has meant that I have

to open up and explain that he still is the most important person in my life-- and that I still want him. In all honesty, our sex life isn't what I want it to be-- I don't have the energy, and my body doesn't have the same responses that I want-- orgasms are a wonderful memory...But that doesn't mean that I don't want him-- sexually. I do. I just don't have the energy to pursue him. One thing I have noticed is that if we're just hanging out watching tv-- I'm sprawled out on the couch, and he's in his recliner. Hello-- sit up, and call him over to the couch. You can both sit next to each other there. Once he's there next to you, you can choose to lay down with your head in his lap. Or maybe he needs to be the one laying down with his head in your lap, while you play with his hair. Sometimes that closeness is all it takes to reconnect--even if it's a small amount. Sure, it's not what we're dreaming

of-- but it's something! The other thing is not just in our relationships. Sometimes we need to force ourself out of bed, get a shower, pull on the sweats, and then take a nap. sometimes we need to get on the jeans and get out of the house-- even if it's just to the mailbox. When the depression hits-- getting outside of yourself is the most important thing you can do. If you are home alone- call a friend, and get honest-- ask them to come over and share a movie. Ask them to bring in your favorite lunch. People want to help us. Our church families spend alot of time praying for us-- but wouldn't a visit be nice. It doesn't necessarily need to be a time to explore the Bible, it can just be friends laughing with each other. If you can drive, go park near a kids playground. Watch the enthusiam they have for life. Step outside and listen for the geese to fly over, cackling

all the way back to Canada. Check out the trees or bushes in your yard-- are they starting to bloom? Pull out the family albums and put a couple of pages together, and laugh about the joy you had. Losing that part of yourself in that most of won't be climbing mountains or canoeing the rivers-- but we can still celebrate those times. (If you want to guilt yourself, think of those whose memories no longer hold those times-- like a soul with Alzheimers. ) What I'm saying is look around you-- see what goodness you do have. Rejoice in It! Take a taste of that special food-- and rejoice in it! Take a deep breath-- and rejoice in it! Take a look at the beauty around you-- and rejoice in it!When you fill yourself and your thoughts with the simple joys-- and allow them to be enough- you will then open your heart to bigger moments of joy! Rejoice!Please, I ask that each of you take a moment and share

some small goodness that you've seen today. We all need ideas on how to cope. With compassion,TracieNS Co-owner/moderator**************************************AOL now offers free email to everyone. Find out more about what's free from AOL at http://www.aol.com.

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[Guest guest]

S,

You are an inspiration. You've been thru alot, and all any of us is asked to do is to get thru today.

We put so much pressure on ourself to be what we where. Well, that's not happening. So rather than beat ourself up with the self talk that we're not good enough or not doing enough, how about rewarding yourself for getting the peanut butter on the rice cake, instead of just the peanut butter straight off the spoon.

It's the little stuff- and we have to find new ways to amuse ourself-- so put some of that peanut butter on the dogs nose!

Hugs,

Tracie ************************************** AOL now offers free email to everyone. Find out more about what's free from AOL at http://www.aol.com.

[Guest guest]

Years ago I read a list of stress-busters. My favorite was dancing naked in front of your pets. I have actually done this a couple of times. The cats were totally uninterested, but the dogs were astonished. Maybe it was just the dancing, but whatever, it cracked me up & I still smile to think about it.

One of my favorite authors is Anne Lamott. In her book "Operating Instructions, a journal of my son's first year of life," she tells of winning a Hoagy Carmichael dance contest. She says, "It was just Sam (her baby), the Kitty and me, but still, we were good!"

Ramblin' Rose

Moderator

From: tiodaat@...Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: Sick and Tired of being Sick and TiredDate: Wed, 7 Mar 2007 22:33:14 EST

S,You are an inspiration. You've been thru alot, and all any of us is asked to do is to get thru today. We put so much pressure on ourself to be what we where. Well, that's not happening. So rather than beat ourself up with the self talk that we're not good enough or not doing enough, how about rewarding yourself for getting the peanut butter on the rice cake, instead of just the peanut butter straight off the spoon. It's the little stuff- and we have to find new ways to amuse ourself-- so put some of that peanut butter on the dogs nose!Hugs,Tracie **************************************AOL now offers free email to everyone. Find out more about what's free from AOL at http://www.aol.com.

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[Guest guest]

I made a dancing CD for myself not long ago. Lost track of the time

while having the time of my life - then my 15-year-old son comes home

from school. Well, I wasn't naked (thank heavens), but his face

probably matched your dog's! Astonished just begins to describe it.

Then the funniest grin krept over his face... Hopefully when I'm long

gone he'll remember my foolish dancing and not my other stuff :-)