Family not much support

[harlin]

how about my kids told me I am sick because I want to be sick. Who in their right mind would want something like this ? certainly not me. 
I have given up trying to make them understand. I just keep it to myself. But when you have a flare, it is really hard.
harlin

[Bernice]

Harlin, I know this is not suppose to be a funny topic, BUT you are cracking me up!! Guess cause I can relate your feelings about those grandbabbies. Chile as much as I love my one that little thing can take a grandmomma D O W N!

My daughter who lives in NC had plans of leaving her (my 3 year old grand daughter) with me when they came for Christmas, and Lord knows I would have loved to have kept her again, BUT I just could not get over the fear of what it was like for me the last time I kept her over the summer. The only truthful way I can express what it was like is that I really thought my body had reached it's limits and would never be the same again, I thought I would be peramently damaged. EVERYTHING, I do mean EVERYTHING on my body was in such pain I could not bear to be touched, I had to drag myself around. You talkin about exhaustion, my Lord!

They came and brought her stuff for the stay, but I just could not do it, shoot I was already hurting while they were here! My husband told me to stop spoiling the parents and plus I need to be realistic and accept that there was NOTHING we could do with and small child at this stage in the game. She didn't mind, she had visited with me for a week, that was long enough for her too! My daughter and her husband just wanted to do nothing for a while!

Last summer she was 3 years old and this child loves her granny to death, she is always on me hugging and kissing or just because she wants to be in my lap. Lord knows I love this child to death and I tried to withstand it so I suffered much of the time, because I don't get to have her here, but towards the end I couldn't stand to be touched with one of her little fingers that she constantly like to poke in my arms and thighs.

Guess what? my daughter just found out she is having #2 and already wants to know how long I will be staying with her to help out this time, before she kept me there for about a month. Yeah God willing I will be there this time too, pain or no pain.

Harlin, sometimes I envy those of you that have grands close by, BUT then there are times when I don't!

[Joy Cox]

Oh Lordy, When get over this 3-4 hr. nap I've just finished, promise I will catch up on reading of this topic.

Bernice, you're a hoot!!!  Harlin, empathy for you runs deeply.  I am sooooooo 'discombobulated' at this moment best to not try and sneek my question, just ask straight out?  Harlin, how many kids, boys and girls?  Bernice, same; how many boys and girls?

Believe me I understand where both of you STAND!!!!!

Not a dry stitch on me... think I go out and roll in snow and COOL OFF!!!!!

[Katybarstool]

I'm lucky in that my nearest and dearest understand that I can't do what I used to do, even though they are never quite sure what's wrong with me. However, my d-i-l broke with us because she said I was just unwell to get attention

I've come to believe that people like her aren't worth bothering about.

Kathyx

[wen.uk]

Oh come on now folks - you know our friends and relatives are right about us, we should all be snapping out of this little spell we are enjoying so much.  After all we love it that our social lives are practically non-existent, our work lives are going or gone down the pan, we can't enjoy our kids/grandkids as much as we'd love to, our lives are so different from what they once were.

Seriously though, it's a shame that some of them can't open their eyes and minds and see what's going on under their noses.  We don't live like this for the fun of it, it's that we have no choice.  I'm very fortunate to have a good and understanding support network round me, mainly because my sister works for a charity supporting Carers, one of whom is a carer for her husband with SjS.  So I think she has educated some of the family.  Think I could do with hiring her out for a few days!!
Wen x

[Bernice]

Joy, I have a total of three offsprings, in this order, son- daughter- son, one grand daughter and another on the way.

[jordozmom]

Oh, isn't it just so frustrating?!  Just makes me want to kick something (or someone)!  I am lucky that my husband, son, mother and brother are very supportive and understanding. 

My husband and son see it every day (and my son has always known mom to be "sick" so he knows I have limits) and my mother has Scleroderma and Pulmonary Fibrosis, so she knows exactly what I am talking about and we can discuss it and compare notes.  My brother knows because he is used to my mother. 

But my friends are an ENTIRELY different story.  Of my two best friends, one has RA and is always very sympathetic.  Like with my mother I can talk about it openly with someone who truly understands what I am going through AND she totally understands when I am down and have to cancel things last minute. 

But the other one - OH!  I can't tell you how many times she has guilted me into doing stuff or told me I should just "suck it up" or has punished me by not talking to me for a week for canceling because I was sick.  Her dreadful mother actually told me once, "Have you ever thought about just telling yourself that you're not sick?"  SAY WHAT?!! 

And people at work don't get it, either. 

So don't feel like you are alone in this because people are like that all over and we here know exactly what you are going through.  They just don't know until they go through something like it.  I tell people it is like when you are coming down with the flu, only I feel like that EVERY SINGLE DAY.  Sometimes they get it but eventually you can just see it in their eyes "Yeah, yeah, yeah - I know 'you're sick'."

Just keep in mind that you will never be able to change what other people think.  You are just going to have to work on yourself.  People will give you "the look" or shake their heads or talk about you either to your face or behind your back, but you just have to keep on keep'n on.  Don't let them get you down. Just remind yourself that you have a disease, you know you have a disease, and the doctor knows you have a disease.  Doesn't matter what anyone else thinks.  THAT is the reality - not what people decide for themselves is your reality.

Well, off of my soapbox now!  Take care, Dear!

[louise]

It sure helps to know I'm not alone.  I just don't understand why people act the way they do. Sometimes I Feel I Just need to vent about hoe I feel today ,not sure why . But then for example I will comment on how sore I am today and I get no reply. It is as though they are thinking oh no here we go again,maybe if I don't respond she will shut up about it. I don't expect much of a response but I do expect one is this wrong?

[Joe S.]

It may be that they do not know what to say to comfort you. What can they say that would help you? For me there was nothing my family can say when I am having problems. The comfort that I find is when they go on with their lives and leave me to work through the pain until I can return to them.

[Joy Cox]

JOE, YOU AMAZE ME WITH YOUR WAY OF THINKING! DO YOU THINK THIS IS A MAN THING-IE? TALK TO ME; I CAN USE A NEW IDEA AVENUE OR TWO FOR THINKING.

 DO YOU ALLOW YOURSELF PITY PARTY TIME???  JUST WONDERING...

BELIEVE THE SPOON STORY MIGHT GIVE ME THAT JUMP START TODAY AS SURE HUBBY WILL BE OUT ON THE FARMS GOING OVER HILL AND DALE AND VISITING WITH HIS HEIFERS AND ALL THE NEW LITTLE BLACK BEAUTIES BY THEIR MAMAS' SIDES!! HIS LOVE OF LIFE...HIS RETIREMENT YEARS AT THEIR BEST!

[harlin]

Joy
I have a son 36 and a daughter 34. 2 grandbabies girls 2 and 5. they are so precious to me but man do they wear me out. I watched them for 7 hours yesterday and was exhausted when I got home. You see i have to go there about 30 miles to watch them. Heaven forbid they come to me.
harlin

[louise]

Harlin, mine will bring them on over so they can trash my house.

[harlin]

Suppose to watch them tomorrow but big snow coming in. We'll see. Takes me 2 days to recover after I watch them but wouldn't miss it for the world
harlin

[ScottishLass]

Hi there,
my family have been my essential support but yeah I get exactly what you are saying.....all the unseen pain and frustration you are feeling.......I also know that I personally feel that when asked how I am now I tend to just say 'fine thanks' unless feeling really awful, because I just feel they would worry all the time and I'd get sick of myself sounding like a complete moan 24/7 if I was to tell the truth as it is.
I too have just found this site and am DELIGHTED to at last not feel alone with all this........It's essential to be able to say how you REALLY are and to be understood and have empathic ears listening and responding.
You'll get that here!!!!
Take care

[harlin]

I agree Scottishlass, but no one ever asks how I am feeling, I guess they don't want to know.
harlin