My head says YES, Sjogrens says NO

[powderpuff]

Several weeks ago I decided to cook dinner for my brother and his family who was hosting a boxing party this past weekend. I have been feeling I could take this on since MTX and Plaquenil started working.

Well, Friday night I decided to start dinner for the next day. I stayed up a little longer than normal and woke up the next
morning to finish the large meal I had planned. It was overwhelming and even painful at times for my back and to stay on my feet, but I got through it.

Sunday I woke up in a huge flare and this time I knew exactly why and realized that cooking the dinner was just too much for me. My head convinced me that I could cook the meal (no problem) but the disease and my body failed me.

Each day I see how this disease is affecting me. Aspects of my life and tasks that used to seem so normal and worry free now require thought, preparation, and sometimes even abandonment.

It's taking me awhile to accept my limitations but eventually, I will have no choice.

"Once we accept our limits, we go beyond them" ~ Brendan Francis

[slccom]

How frustrating for you! I wake up with all these plans, and somehow the day passes with very little done.

Sigh.
Hugs, Sharon

[odie]

Sunday I woke up in a huge flare and this time I knew exactly why and realized that cooking the dinner was just too much for me. My head convinced me that I could cook the meal (no problem) but the disease and my body failed me. 

And yet we keep trying just in the slim chance that today will be different.

[Carolina]

Lol, Powderpuff,

Yes, and soon enough we realize that we MUST listen to everything, not just our powerful, willful mind/ego!

Pacing activities, and delegating work, and eliminating things altogether will come easier as time goes on.

It's hard, tho' to give up the things we love and used to do easily.

And sometimes you may be able to do some of them, at least part way, again. 

It's the uncertainty that is difficult.

LISTEN to your body.  If you are tired: STOP and rest.

If you have PAIN:  Stop and rest.

It's really pretty simple, but not easy.

The 'boss' in your head wants to order  the rest of your body around.   HAH.

How  much better to be rested when your brother arrives and order in a pizza!   

That said, I produced Thanksgiving for 24 people, while dreadfully sick with a virus (one of the many illnesses I had which are probably part of my 'new diagnosis of CVID).  Not only Thanksgiving, but another follow up meal, and yet a third one.  Made with left overs, but it's just the coordinating and the table setting and stuff.  AND having other people around all the time.

A huge cohort of family were in town for a big family wedding (some staying at our house) and I didn't think I could get out of this or delegate much.

So I can talk the talk, Powderpuff, but even at 71 I have trouble 'walking the walk' sometimes!

But that was an exception.  No more of that for me, thanks.

Take care, keep posting.

Hugs

Elaine

[finallyadx]

Sorry to hear you are having difficulties.

I, too, suffer from the same - I think I can, I think I can, I think I can...overdoing, overextending myself and my time and energy and then kaboom I go crashing down.

We do have to realize our limitations, pace ourselves and listen to our bodies when it is time to slow down, relax, take time, we have to learn to do that.

Easier said then done.

I have been in a rut for almost a year feeling progressively sicker and now that I have been on an upswing with plaquenil kicking in some for me, I felt as though I could "conquer the world"...wrong, wrong and wrong again!  I overdid it and am paying the price now.

We all will learn what we can and cannot do and hopefully we will all learn from our mistakes.

Keep your head up high and do what you can and be happy with that.

[quietdynamics]

A long time ago I read "Turn stumbling blocks into stepping stones"

..and that little saying got me through a lot; way before this occurred. Keeping my glass half -full.

I learned to shortened my list to at most 3 things.

Well, if I did two with one left over, I could ask for help on the with the other.

If I did the 3 things ...STOP.

And even more important...for me...was by keeping the list short and doable...I was not setting myself up for disappointment and negative self-thoughts. 

powderpuff: It's taking me awhile to accept my limitations but eventually, I will have no choice.
Ah...but, we can then become creative in our adjustments? Cook the meal with our family? Share the joy of cooking?...the chit-chat and the satisfaction of a family job well done.

So does the door close? Or could it open wider?

[ellenkerr]

Sorry overdoing it caused a flair....I  am also struggling on knowing how much is just enough and not overdoing it.

When you overdo it and get a flair how long does it take the flair to go away?  My last one lasted the longest and it

was about 3 months.  I wonder if most of us have a type "A" personality?  It sounds like we all have just one more

thing to do.  I'm sure your brother and family enjoyed the dinner, and hopefully you will feel better soon.

[Sleepy In Seattle]

LOL - well, yer in good company!     

All the women in my family tend to respond to any "limits" the same way a bull responds to a red flag....   

These diseases are making me see life differently, but it's always, ALWAYS a struggle. Live and learn...live and learn....

[Suslew]

I have to concur with what everyone is saying and it's tough.  I've been diagnosed over a year now and it took me a long, long while to recover from my two years of just trying to soldier through it before I knew what was going on. 

It's gotten much better with the support of my husband who has begun to understand that if I fake it,I will most certainly pay for it as he's seen it many times now.  That helps a lot and he will step in if he sees me going down. I'm beginning to realize that having a plan of escape,or a plan B, is a necessity. 

It's hard to slow down, it's difficult learning to listen to your body, it's really hard holding back some when you're having a rare good day. 

But yet I still try to do thing and do things that feel beyond me - it's human nature!  I think at times we're all willing to take the risk.  Sorry about the flare and I hope you feel better soon!

[powderpuff]

Thank you all for your wonderful words and advice. Although still in a flare, I am comforted that I have the support of this forum.