Wow. A friend of mine I rarely hear from...unless she needs something...just called. She asked me to babysit her three children on New Years Eve - all night - till the morning! I finally mustered up the energy to say "no...I can't...I'm sick." She started laughing! "Awww....your not sick!"
Really people? Just because I don't want to go around looking like a zombie everyday of my life...doesn't mean I feel okay!!! ERRRRR!
Gosh....
Like my friend from Mississippi would say, "doncha just wanna jack a knot on their little pea brained head!!!" LOL! Ignore her. She's clueless and shallow.
Exactly!!
I aim to look good too except on the days that I feel really bad.
For someone to tell you that you are not sick - oh no!! I cannot type the first thoughts that entered my mind.
You don't have to try to convince her that you are sick. You did the right thing by saying no, I can't do that. End of conversation!!
Happy new years eve in PEACE :)
Duchess
The nerve of some people never ceases to amaze me. Funny how she only called when she wanted something. REAL friends call to say hello and ask how you're doing once in a while. Had she done this, she would KNOW you have a chronic illness.
Sorry - but don't give it another thought. Not worth it!!
Hugs,
KellyG
So...I just wrote this letter to let off a little steam....what do you think?
A Letter to Family and Friends
Please excuse my Sjogrens?.I may ?look? okay some days but behind my smile you have no idea what battles are being waged. Every day is a crapshoot and I never know, from day to day, how the Sjogrens dice will fall.
? Will today be the day my eyes are so gritty I can?t see to drive?
? Will today be the day my mouth is so dry my tongue sticks to the roof of my mouth and it?s an effort to talk?
? Will today be the day my ears feel like they are going to implode and just hearing any type of noise is unnerving?
? Will today be the day I have to cancel plans with a friend because I don?t have the strength to leave the house?
? Will today be the day the glands in my neck are so swollen and heavy ? it?s an effort to hold my head up?
? Will today be the day I have to stay in a dark room all day because any type of light sends me reeling into a migraine?
? Will today be the day I have deep uncontrollable coughing?
? Will today be the day I come down with a virus because my immune system is too busy attacking me and fails to attack real invaders?
? Will today be the day I have to lay down all day because every joint in my body is painfully inflamed and I can?t walk without assistance?
? Will today be the day I drop everything I pick up because my hands are too weak to grip?
? Will today be the day I can literally see my hair falling out?
? Will today be the day my blood pressure is so low I?m afraid to stand up.
? Will today be the day I realize how crappy I feel and I break down and cry
? Will today be the day someone says??awww?you look fine?.you?re not sick!?
Or will today ? be one of those rare blessed days ? where I actually feel pretty darn good! I can walk, I can talk, I can see, I can hear, I can breathe, I?m not dizzy, and I?m happy! It?s going to be a great day. These are the days I cherish and want to share with family and friends. Those other days ? I still need you ? but please excuse the Sjogrens- it?s left me quite a mess
Laughing? Really? And this is supposed to endear her to you so you'll do her a HUGE favor and keep three kids overnight in your home?
What a dope. Who would say that to another person? This chick is a real ignoramus. I, personally, would write her off.
This is one of those times I would pull out my often-practiced-in-front-of-the-mirror line: How nice of you to say!
Only YOU know you're being facetious.
I'm sorry to hear you had to deal with this :( I completely understand though. I just went through sorta the same thing with my mother over Christmas. I see her maybe 2x's a year. While an aunt and myself were talking about her health issues and mine my mom chimes in saying "I'm glad I don't have all your health issues how do you work" WELL... That instantly angered me. I completely understand she's my mother and I am suppose to respect her but shesh, the woman never has anything nice to say to anyone. I of course came back with "Ya know I'm also glad your not me! Feeling like your going to die and never knowing what to expect day to day sure isn't a joy in the park and excuse me... why do you think I don't work". What urks me like your friend is she doesn't talk to me or bother with me yet she can cut me down or whatever it is she's attempting to do. By the way she did not say a word back to me she walked away. UGHHHH My aunt just looked at me and said ignore her. It's so hard though.
I'm learning to chalk these people (including my own mother) as people I do not need in my life. I have enough down days I don't need them making me feel worse.
"Spoon Theory"??????
I would have said, "You're right. I'm not sick. I just don't want to babysit for you."
Would have shut down the conversation real fast :)
Quote from: LisaMarie on December 28, 2011, 10:54:26 AM
I would have said, "You're right. I'm not sick. I just don't want to babysit for you."
Would have shut down the conversation real fast :)
ROFLOL!!! Good one! ;D
Quote from: LisaMarie on December 28, 2011, 10:54:26 AM
I would have said, "You're right. I'm not sick. I just don't want to babysit for you."
Would have shut down the conversation real fast :)
LOL
I love your letter Arsty, I am going to copy it and put it on my fridge.
Good one Lisamarie!
Atsy, Great letter!!! You need to send it to all your relatives.
Also, I think that any friend who says that to you is not a friend at all. I would not EVER babysit for her. She doesn't have a clue. IRish
I have had a similar comment said to me to which I replied 'To the uneducated on this illness, I can see why you say that but you might want to read up on this disease before making such patronising judgements'
Sounds harsh? Perhaps but as I am in a bad flare at the moment, I have absolutely no time for those that choose to make uneducated comments to me which serve no purpose other than to make me feel bad.
You did right to say no, if you make yourself sick through looking after her kids, will she spend the next few days/weeks/months caring for you and paying for your medication? I think not.
In your world, you must come first - Sjogrens may be an unwanted lodger in your body that you have no choice but to please in order to maintain a certain balance of health but when it comes to people making demands on your time to please them - you have the right to say no.
Hope you have a lovely New Year - chilling out and putting yourself first.
Corella, I've copy-and-pasted your wonderful sentence into a word doc and I will practice this one in the mirror. Thanks!
Quote from: A66eyroad on December 29, 2011, 05:44:44 AM
Corella, I've copy-and-pasted your wonderful sentence into a word doc and I will practice this one in the mirror. Thanks!
No worries 8)
I am still in the 'is this really happening stage' which is comparable to being very defensive to anyone that challenges how I am feeling. Whether or not that is a good thing I dont know but I am on zero tolerance, last week I had a comment saying 'You are always bloody sick you are' - to say I felt some verbal aggression is an understatement.
Today I saw my GP and said to him 'Are you sure there is no cure for this and I have it for life?' He replied 'Sorry, I am afraid you certainly have it and there is no cure'
'But I dont want it' I said in a childish whining voice that did not belong to me. He burst out laughing and I said to him 'that sounded very childish didnt it?' and he said yes it did.
So whilst I havent reached acceptance, I think I am at the 'fear' stage of 'god I dont want to lose my teeth and hair', I do however refuse to accept the fact that others think I am putting this illness on, hence the reason I am defensive.
I guess it is a time for finding out who is your real friend.
:-\
I guess the blessing in disguise about illness is that reality stares you in the face about certain people and priorities. While the realizations can be disconcerting, it's an opportunity to rearrange our lives in more meaningful ways. Time, energy, and relationships become precious and we are compelled to adapt and be aware of making better choices. Pay attention to how you feel after talking with someone. If you feel drained and deflated after talking to a particular person, avoid them. Spend time with the people who lift your spirits and leave you feeling energized. You can't afford not to.
Will today be the day someone says??awww?you look fine?.you?re not sick!?
---I like that one, artsy! Type it up and send it out!!
Someone on my Facebook said today that her New Year's resolution was "I'm not going to take any S**T off of anyone!"
;D
I have had this darn illness for a long time. Suffering severe for at least 11 years now. But only just found out what it is this past summer. All these years, while suffering so, I learned not to waste my time on what does not need it. And that includes people who are of no good to me.
Someone like that chic would definatly be someone I would not continue to call friend or waste my time talking to. I feel lucky that I have already weeded out the non real friends from the real ones before I even knew what my disease was.
Im sorry she acted like that to you. She is a self centered person if she is like that. You deserve better. That chic does not deserve the name friend. I am so proud of you for saying no. That is hard for a lot of us to say. But we have to learn to do it.
Luna
artsy, I like your letter - it does a great job of describing the many different ways SjS affects us beyond our eyes and mouth.
And I love the "You're right, I'm not sick. I just don't want to babysit for you" response! ;D
Amy, the most important thing is you said....NO...... What a big favor to ask of someone who is not related or the job being well paid. Usually babysitting is not well paid. Just say no, just say no. Lucy
Thank you guys! I love and so appreciate your humor and your support! Have a great New Year!
Artsy, I hear ya !!
I've stumbled at least four time in the last two weeks....weak ankles, imbalance, foggy thinking caused me to bump my head a couple of times and had two bruising/abrasions falls on a brick walk....well I told my friend about it on the phone when she asked me how I was doing these days...she knows I have SS. She says to me "oh everyone I know knocks their head all the time...your FINE...you're not sick!" This just stuns me...I just sit there silent on the phone with the ignorance. I do know this friend and understand her motive is to encourage me that I'm really OK. I know truly that this is HER way to deal with how this disease frightens her so that's why I'm glad I have you all and this encouraging discussion group.
I've had this disease for over a decade but just diagnosed in November.
Having a cervical MRI in two weeks as Neurologist suspects MS lesions on spine. but whatever, I just am glad you all are here.
Gina
Welcome, Gina! I am glad you found us.
Please let us know how the MRI turns out! We'll be thinking of you and hoping for good news!
KellyG
Yes...I'm sure the "you look great" or "everybody has that" comments are sometimes meant to help YOU not freak out over your illness...BUT sometimes they come across as dismissive. I think the best comment you can give someone when they complain of an illness is..."I'm sorry you feel so rotten....I'll be sending positive vibes (prayers) your way." Or offer to help in someway. Even though I hate asking for help...just knowing there are people out there who are available...is comforting.
I used to have a co-worker who was very dismissive about the times I did not feel well and came to work.
With her though, the attitude was that anyone that came into work sick was out to get her sick personally! >:( Being a BC survivor you would think she would understand and be sympathetic but no way! Whenever she got sick, she was mad at everyone and really complained & milked it for all it was worth. The world centered around her = period. In time I finally got her to realize that she had a compromised immune system just like me. Prior to that she drove the office nuts and the boss had to get after her.
I got the, oh you are fine and you don't look sick, so many times I just learned to ignore her, My boss was the only one that knew and I wanted to know about my Sjogrens. Boss knows the times I have toughed it out and NEVER complained.
It is durn hard to educate the ignorant who do not want to be educated. ::)
Love that phrase.
Another line I've memorized and practiced so that it just tumbles out without my having to think: It's hard enough for me to accept what I'm going through. I don't need the extra stress of trying to convince you."
I deal with two sides to this "You don't look sick" issue. I of course hear that all the time! But, I also have a constant dry cough, dry lips, swollen glands etc. so now that winter is here the second I cough someone says. "Oh, it's going around" LOL Yea... sure it is :)
Quote from: A66eyroad on January 03, 2012, 07:15:46 AM
Another line I've memorized and practiced so that it just tumbles out without my having to think: It's hard enough for me to accept what I'm going through. I don't need the extra stress of trying to convince you."
YES!! I'm going to borrow that one, if you don't mind. ;D