Still having the occasional Pity Party (:

[Meld256]

My friends,

I suppose this is the nature of "this beast."

I feel blessed that I am feeling better overall in the last months.  Lately it seems that I can feel fairly energetic (and have a rather low level of pain) for a couple of days, and then really be hit hard with even more painful joints than ever before. 

It seemed every joint screamed at me all weekend. And what surprised me is that I was back in a depressed mood.  I thought I was coping better than this, but it just seemed to "wear me down." 
I know this pain doesn't last forever, that I will feel better, but in the height of it everything seemed so bleak.

Maybe I expect more from myself...guess I just needed to vent a little.  I know we all deal with this sort of thing, so thanks for listening.  I appreciate you all! 

[LizPetillo]

Being endlessly sick ... all the time .. with no end ever coming ....
OF COURSE we are going to feel bad for ourselves.
It's natural.  It's expected.  We'd be robots if we didn't.

Honestly .. the folks who continually are positive while feeling like this ...
I think there is something wrong with them .. must be aliens or something...
zombies ...    I'm human and being sick without an end in site .. that's TIRESOME.

[Patze]

Hi Meld,

Oh I sure do know what you mean!  The pain is never ending and like Liz mentioned, it will wear the tar out of you. 

Sending you some very gentle

( ( ( H U G S ) ) )

my friend and hope that the pain ends soon for you.

Take extra special care of yourself -

Patze

[Meld256]

 Liz,

You're right, and it helps.  I usually can be positive, but some days are just hard. Tiresome is a good way to put it. 
I gotta expect these days that I'm worn down, and just go with the flow.

Thank you.

Patze,
I know you can relate, like most all of us.  I really appreciate the "hugs."

I'm going to pile up under a heated blanket and look forward to my baby girl coming to visit tomorrow.  That will help!

[KellyG999]

Melinda - I understand completely. I think the pain is what causes my constant fatigue. My pain meds help some, but I can't take them 24/7. I actually feel guilty that I am depressed even on Zoloft.

I am sorry for the pain flares you are having. There are so many good people here who really "get it." Literally and figuratively....

Soft, gentle hugs,KellyG

[Duchess]

We all need hugs and a shoulder to lean our heads on. Having a chronic illness is hard to deal with.

I get really frustrated and angry at times. That's when I have to ask for my hugs. I talk to our heavenly Father a lot and that consoles me. For the asking, He will send us some earthly beings ( such as this forum) to help us with our dismay.

HUGS, HUGS,& More HUGS

[4Kids]

Think of it as honouring how your body feels. When you can deal better, you will, right.

Major, big hugs.

[Suzie]

HUG!

You're absolutely normal in feeling down sometimes - it is mighty strange when people who deal with physical discomfort or pain claim to be upbeat and positive all the time, with never a shadow of self-pity or why-me-thinking darkening their every sunny day.

I go through cycles of positive and negative thoughts, feeling blessed and cursed, self-pitying and content. All in the same day!

How does the Serenity Prayer go?

God, grant me the serenity to accept the things I cannot change,
Courage to change the things I can,
And wisdom to know the difference.

We need a Sjogren's Serenity Prayer! Let's try to think of wording. Wisdom to know when to stop what I'm doing, not do that "just one thing more" that pushes me over the edge and just LIE DOWN for a while would figure in mine. Might have to work on the wording.

God, grant me the serenity to accept I can't do it all anymore,
Courage to set my own priorities in the face of societal and family pressure,
And wisdom to know when to stop before I collapse.

with love,

Suzie

[Carolina]

"It's my party, I can cry if I want to, cry if I want, cry if I want to!
You would cry too if it happened to you!"

Yep, I'm trying to learn how to float with the depression that pain brings, how to stop fighting it so hard, without getting swamped.

I find that the work of fighting the depression is as exhausting as the depression.

But of course I fear the depression, cause I don't want to get stuck there, either.

If I try to sort of float with it, acknowledge it, feel it, it lifts on its own at pretty much the same pace as if I fight it.

The thing about pain, tho', is it just is so endless.

oh well

I hope you're on the upswing by now, Melinda. 

For me I just forget that the up part is only PART of the cycle, which is bound to turn down again...........

I guess we're not really made to accept this stuff, as human beings.   So of course it's hard.

Hugs

Elaine

[amberjolie1]

I totally hear ya.  Hope you feel back on your upswing soon!

[prunella]

Oh yeah.  Vent on!
I think  I have had Sjs for 20+ years.  I was Dx'd about 5 years ago.

I feel myself getting weaker each year. Yet, each day I get up expecting to have a good day and seem surprised when I don't. Then I feel sad.
How silly is that?  I guess I should thank the brain fog!

I am still in denial that I won't heal from this ailment.  If I could manage it,  I would consider helminths, just to be done with the pain and fatigue.

I just want to be done with it!  "Tiresome"  is the perfect summary.

love to you all,
beth

[warmwaters]

I hear what you are saying - There are times when I think I'm the saddest, grumpiest stick in the mud. When I mutter this at my partner, he very kindly reminds me that I'm in a lot of pain, and haven't had enough energy to do (whatever it was that day - like carry my plate to the table).   Thank goodness he mirrors that back to me, or it would be really be easy to think that the bad part will always be there.

But I have some good days too, and when I do, I realize that the "down" part is more about the pain than who I truly am.

Best!

[Meld256]

I am feeling a bit better tonight, thank you all!

Everyone's understanding and encouragment helps more than you can ever know. 

Thanks for the song, Elaine. It made me smile; that's just what I've felt like the last week.  I hate feeling so down when I'm in pain!  I know it's normal and to be expected and I still hate it.

On occasion, I just need to give in and do what I feel like is "wallow" in it. I succumb to self-pity, and I don't like it, but as said, we're human.  Sometimes it just can't be helped.  I just need to "stop, drop and (whine)" and wait for it to subside.

And Suzie, That's a great Sjogren's Prayer.

I feel so lucky I can come here and vent and whine, and be honest about things and receive so much love and caring.  It means so much...

Tomorrow we have our dear daughter coming to visit for a long weekend.  She's pregnant, gets tired easily and has had horrible morning sickness.  If needed, she and I can pile up on the couch together, and we'll still enjoy our time together.   

Blessings to you all,
Melinda

[YYC_ Mommy]

I think having a pity party is completely normal and I too like to throw myself a pity party as well

Having an illness is a difficult emotional roller coaster not to mention the physical pain that we go through. I know exactly how you feel!

I hope that you have a wonderful weekend with your daughter!!

[soycoffee]

Well, a pity party of my own, today. The song "I'll cry if I want to," is okay. I get it.

The only problem is, I don't cry, and apparently can't cry unless I use Lacriserts, a capsule of tears that's inserted in the eye, and unless I insert the Lacriserts correctly. I just don't have the tears! How do I cry about not crying?

Sorry, not very positive right now.
Soycoffee