Family Zapping what little energy I have....

[Parched]

Hi, I really need a place where someone understands...   

The holidays are tiring for everyone, I get that but I am so frustrated with family thinking what I feel is the same thing they do....  I have cut way back on how much I do this time of the year but it just doesn't seem to have been enough..  everything hurts, my tongue is painfully raw and I'm just wiped out.

Now all of the family is upset with me because I am choosing to skipbthe get together for New Year's Eve.

Oh well thanks for reading, I just needed to express some of how I'm feeling....

[KellyG999]

Oh, Parched.

I hear you on that. I was very ill on Christmas - my usual "stuff" plus a raging sinus infection complicating things. I knew my mother would have a fit if I didn't go over with my family for dinner and presents, so I had to drag myself over there. I slept in her guest room for 2 hours. Oh, well.

I keep trying to get SOMEBODY in my family (preferrably hubby or mom) to read "Positive Options for Sjogrens Syndrome" which isd a fairly short and simple read. They still ask, "Why are you sore all over again?' Folks, I am like that about every day. Please read the book and at least try to understand...

Take care of yourself, do what you can and don't be like me. I push too hard and pay for it. I am sorry you are being put in this position. Maybe they will read the Spoon Theory? It may help them "get it."

Soft hugs,

KellyG

[gold55]

Hi Parched,
Please take it easy....do what you feel you can and don't get on the guilt trip.  I basically had to give up the two family members I have left who couldn't understand why I didn't want xmas company out of town living with us prior to the holidays....oh well....now I try to do what "I feel like doing" instead of pleasing all the others.  Guess it comes with age.  ONe day they'll understand....maybe.

[Duchess]

These are classic examples of when we have to put ourselves FIRST!

I am still struggling with that, but I  am getting there. You can't be concerned as to whether or not someone understands; you must do what you need to do to take care of yourself.

I am so grateful for all of the support that we give each other!! 


Duchess

[Jellyb]

I hear you Parched,
I deleted half of my obligations off my list compared to last year and still felt overwhelmed. Came down with a virus or something christmas eve. Pushed through and had 12 people for christmas day. Did everthing!

Next day my husband could not seem to want to let me rest, he kept waiting for me to ralley some strenghth do go do something and I couldnt.

[annken]

this is a real problem.  i am shattered tired all the time...i have crohns, ceoliac, raynauds, fibro, hypothryoidism, generalised dystonia and primary sjogrens syndrome, i am in and out of a wheelchair and cannot walk more than a couple yards with the aids of walking sticks or walker, YET i am also expected to clean house, do the shopping, drive the car and now doubling up as twin does NOTHING but sit and watch telly and hardly speaks to me...hopefully i will have my own place soon, but i love my twin and she has parkinsons disease and is rather cognitively compromised.
i tend to do everything, dont ask me but i yearn for her to be happy and i dont get even an expression of how she is.  i never lived with her, not even in the same country for over 40yrs.  oh, i also have asperger as does she, can you imagine how mad that is, i am finding it difficult to say 'no' a big 'NO! i cannot!'
and simply noone CAN 'read these lips please!' fed up and jaded, crohns and sjoggies flare and fibro off ricther.

[Parched]

Thank you for the replies..  I guess I just needed to be heard, somedays I just feel invisible and alone.   this disease robs us of so much... I thought I was coping well with this but I guess I am having a relapse.. Does that even make sense?

Thanks again for the replies and just being here.

[susanep]

parched you sound off all you want. You are heard here, and you sound off as often as you need too. We understand, and have been through similar things with family, friends, etc.

I am so glad you shared with us.

susanep 

[Narablueeyes]

Yep, sometimes I just wanna scream, "STOP THE WORLD!!!  I wanna get off for a while." Just so overwhelming sometimes.

[Meld256]

Parched,

Welcome to our site and group!   

This is the place to come for support, encouragement and caring.  As susanep said, sound off all you want.    We all need to do that from time to time, and we all feel alone and misunderstood sometimes.

It's hard for our family/friends to understand how we feel wiped out so often. They cannot "get" how if we get a little rest, why can we not keep going longer?  It just doesn't work that way.

You cannot worry about not going to a New Year's celebration. You can only do what is best and right for you.
I hope you begin to feel better.
I'm also very grateful for the support we can give/receive here each day! 

Take care,
Melinda

[Autoimmunity]

Hi, I really need a place where someone understands...   

The holidays are tiring for everyone, I get that but I am so frustrated with family thinking what I feel is the same thing they do....  I have cut way back on how much I do this time of the year but it just doesn't seem to have been enough..  everything hurts, my tongue is painfully raw and I'm just wiped out.

Now all of the family is upset with me because I am choosing to skipbthe get together for New Year's Eve.

Oh well thanks for reading, I just needed to express some of how I'm feeling....

Your tongue is raw?  Is it also bright red?  You might have heard this already, but sounds like b12 deficiency.  Just a thought.