Goofy's turn to rant....

[goofynina]

Today we get a phone call from my friends daughter who invited us to a party at their house.  Which is fine, so we made plans to join them for the party.  Well, after cooking Sam's breakfast and cleaning the kitchen, i decided i dont want to go, the heat is here and i dont deal well with the heat so i told Sam that i'd rather not go, and he said, (this is what pissed me off)  he said, "fine then, just tell them your not feeling well"  rolled his eyes, threw up his hands and walked away.  OMG, WTF??  After awhile of letting it sink in, i couldnt take it no longer, i had to say something, so, i sat him down and let him have it.  I flat out told him each and every pain that i go through on a daily basis.  I told him that no matter what pain i am in, i still manage to cook for him, clean for him and do all the other "wifely duties" that i can.  The last thing i want to do is to go sit for hours and hours, especially when i am not feeling well, and watch everyone drinking and laughing and just having a great ol' time when i am sitting there and thinking about when's the last time i took my Epogen shot, or kicking myself for not setting up my machine before i went, or some other thing about dialsysis that stops me from enjoying myself.  Granted, there are days when i feel good and those are the days i say, lets go for a ride, or lets go see this person or that person, but those are so few and far between.  When we are invited to a get together and i dont go, hubby comes back telling me how EVERYONE was asking how is Susie doing?  is she feeling allright?  what's going on with her?  Hey, the phone is right there, i dont see them calling me and asking me those questions, so why should i put myself out and go just so i can be bombarded with their "concerns"  sorry,  not me.   I try to be as positive as i possibly can UNTIL some crap like this happens then all hell breaks loose.  Now, Sam has been kissing my butt and doing everything for me that he can,  i told him why did it take for me to have that mental breakdown for you to open your eyes?  Of course he apologized, i accepted and i am in love with him more than ever.  But damn, the shit i have to go through, sheeesh 

[kitkatz]

Yeah, I know.   That is all can tell you. Tears come to my eyes for you.

[RichardMEL]

Hug Xena when you're not well.. she will understand.

Look I know it is tough for partners/spouses etc sometimes to get a handle on what it is we have to go through... but it does seem like a slight lack of support on Sam's part.. I mean you'd think he's known you through all this and the sorts of things that can happen and how you can feel bad, not deal with the heat etc. Plus yeah going to a party... omg yeah it's so difficult to sit there and watch people drinking and carrying on and you're sitting there dying of thirst.. I had one guy at work the other week call me a wuss because I wasn'g going to go drinking with them.. well I said I can't because of my fluid restrictions and he just rolled his eyes.. I think maybe he thought it was some kind of bs excuse.. I dunno.. but it's like ffs if I could be there drinking with you guys I WOULD - and I'd be buying the jug!

*sigh*

*hugs for Nina*

[Rerun]

Susie.  That's why I'm single. (well, that and I can't get a date)  I was married and he was a young healthy guy and couldn't understand why I couldn't go on an overnight horseback ride.  So, I went.  OMG I was so weak and so wanted to kill him.  I remember wishing him and his horse would fall off a cliff so I could go home.

Then we were boating one time and I forgot my binders in the pick-up.  He wouldn't go get them for me saying "you don't need them."  I got mad and tried to go get them myself and about passed out.  That started a HUGE fight in front of his family. 

I'm glad Sam apologized to you.  I love the heat because I sweat really well and then I can drink a little more.

[KICKSTART]

If you had a broken leg , then people would expect it to take 6 weeks to heal and know you couldnt do certain things , but with dialysis there are not really any outward signs to see most of the time ...and what people dont realise is the effort you put into 'every day' just to try and make it normal , you drag yourself through days sometimes and so it gets to be expected of you. I think in part we may be to blame, as most of us say we are fine when we are not, just because we dont want to bore people with the facts. I would expect people close to us to be the most understanding , but it doesnt always work like that , we just do to much for our own good!

[RichardMEL]

Aww rerun I'd date you... if I was anywhere near close enough... oh but I do have a thing for angela515 too At least we'd have some idea what each other was going through medically.

hey that renal romance... great idea Epo

good point also Kickstart.... We try so hard to run life as normally as possible while dealing with dialysis. And yes, I've had people say "oh you look so well" like that means everything's fine. I'm glad if I look OK but that doesn't mean I am.

it's pretty tough sometimes.

[KICKSTART]

Richardmel  you cant date Rerun , we are going horse riding together . I need another female friend to go riding with and one who does dialysis would be perfect, we would both understand exactly how much we could do .(If i lived in the USA i would really have loved to meet some of you to go riding!)

[boxman55]

For me I am finding that lately I would rather be by myself then be with other people. that why I can walk at my own pace sit when needed and not be the topic of conversation. dialysis is truely changing my life..and I don't like it but have to deal with it.
Boxman55

[Sara]

Sorry Susie.     All I can say is, sometimes we spouses do forget all you go through, so definitely remind us (in as nice a way as possible, unless we're being jerks).   

[kitkatz]

But then what would life be without a few misunderstandings and a few apologies here and there. You and Sam can take some time to make up now. "Wink" "wink". 
I know how you feel.  The hubby went off to Arizona to a shoot out int heback of beyond in the desert yesterday. I told him I did not want to sit out in the heat with no water and be miserable for the day. He came home full of "You would have liked it." No, I would have been miserable watching everyone drink and carrouse while I sipped a warm coke all day long. Man, sometimes they just don't get it!   
But it is okay. I had a Pajama Saturday all day yesterday. The only time I went out of the house was to get Baker's tacos and I was in my mumu through the drive through. 

[okarol]

  {{{HUGS}}}

[Sluff]

Hang in there goofynina, making up is the fun part. I know exactly how you feel. I just got home from the cabin and I've been sick all morning and my buddy calls because he wants to go riding in this 88 degree day, he thinks I'm sick because I don't eat properly. he thinks that's why i have had a migraine for most of the week. and the back pain is just because i don't exercise.  Oh well same channel different day. But I do know how you feel. I'm here for you.

 

[goofynina]

I must tell you all how comforting it is to know that YOU all know exactly what i am feeling and exactly what i am going through,  no one else seems to understand, its crazy, but as long as i know you all do, that is what is important to me, and you all better believe i am going to let Sam read this thread    Dont get me wrong, he is an amazing man, very caring and considerate, but then there are those days, lol,  i am sure we all have 'em.  Well, thank you all my friends for not only listening to me rant but for your kind words and understanding.  You all mean the world to me and i love you 

[del]

Good that you had the "talk". Sometimes we don't realize how the other person is feeling especially if it is something we realy want to do(hubby is the one on dialysis).  Making up after is the best though!!

[RichardMEL]

Nina I think the key here is that nobody is perfect and perhaps from time to time we all need to be reminded of such things... Sam is wonderful as we know... but it seems he just needs a reminder that what you're going through isn't trivial and you wouldn't ditch the party because you wanted to and you have valid reasons for how you felt...

And I can sooo too date rerun... in between horse riding sessions... :-)

[livecam]

Ya know something Susie?  Something like that came up for me the other night.  There was an event that had been planned for months that I couldn't go to.  If I really don't feel good I'm not going to force myself to do something that will just leave me more tired.

We didn't really argue much about it.  We discussed the matter over a day or so and when the time came I decided against it.  An $85 ticket down the drain?  So what!  Feeling better and not pushing the limits are more important than trying to be pleasing.

We aren't like most people out there.  Our limits are different and only you know where they are.  It is good to respect them and most likely feel great the next day as a result.

[Joe Paul]

I try not to make any plans till the day of what ever is going on, that way nobody's mad or hurt.