I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Spouses and Caregivers => Topic started by: texasstyle on November 06, 2011, 04:19:28 PM
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Maybe it's the time change, maybe it's the moon. I don't know but I do know I can come here when I am feeling good and hopeful, but to day is not one of them. Even as a caregiver I'm just tired of, being tired. I often feel like we're just existing anymore. No "future" as I watch my spouse sleep most days. Losing my sense of "me again. Yes, I have made some of my own personal accomplishments but I am so wrapped up in this for years. Even before the dialysis started 4 years ago. The years of sickness prior. It is a very rare occasion when someone asks how "I" am actually doing. You know how I feel because I'm sure you have days like this as well. The worrying beats me down. "Sometimes I feel, sometimes I feel...like I've been tied to Whippin' Post"...Allman Brothers
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I'm so sorry you're feeling bad today. Your help and support of your husband is inspiring. I'm sure it's very tiring for you and difficult to deal with his illness. Your posts on this board are always very inspiring and helpful. Please do what you can to take care of yourself better. This is all very wearing for the caretakers, as well as the patients. Definitely easy to feel beat up and down. We've all been there. I hope you're finding something to get yourself out of this funk. I truly hope it passes and you can find an outlet for yourself that doesn't make it seem that dealing with an ill husband and his dialysis is all you do.
Love your new avatar.
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Awe, TS, I understand completely! And I admire your honesty! Allman Brothers was one of my favorites back in the day! "Eat a Peach" was the Best Album of all, IMO! I loved the Acid Rock bands of the late 60's and early 70's: Uriah Heap, Led Zepplin, Deep Purple, Jimmy Hendricks, Janice Joplin and so many more! I was so young and "stupid" back then but only hurting myself with dump things I did. But you know, Ive changed alot, but still remembering those Bands and I can enjoy them without all the "meds". LOL. Allman Brothers was a fantastic group, but after Dewayne died and Gregs marriage to Sher, they kind of fizzled! Dewayne could make his guitar (slide I believe) just talk to me with "Sweet Melissa" and Blue Sky. Man, I love those songs!
See, I got you to thinking on something else, didnt I? That is what makes people on here so special!
Thinking of you, TS, always
lmunchkin
:kickstart;
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Thanks so much Todd. You also are very encourging! Believe it or not, I'm feeling a wee bit better. I'm over tired and I think I'm getting a second wind. I was just trying to look up support groups for our (Phily) are as a matter of fact. I think I am on to something but need a little more time to try and get a few more together. This head cold has got me down too. Feel like blah... lol Talk to you soon!
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I may be wrong TS, was Dewayne alive when the did "Sweet Melissa" and "Blue Sky". Im thinking he was, but then I can't remember! Must be that "junk" in the 70's I consumed! Thank God, those days are over!! Thank you Jesus!
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Yes you did and it brought a smile to my face! Double exclamation point!! lol Don't forget the work with Derek and the Domino's.
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to the best of my memory (haaaaaaaa....!!!), I think they're both from Eat A Peach Duane's last
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TS,
Your post reminded me of the day that I had to make an emergency trip to the dentist because a temporary crown had come off. What I really needed was for them to glue the da$%ed thing back on again, but instead, they gave me some glue to use and then asked in a solicitous way how Carl was doing!
I broke down in tears and said that Carl was FINE, I was the one falling apart! They were ever so nice to me after that! :rofl; :rofl; :rofl;
And now for the REALLY funny ending to the story. After I got back with that glue, and tried gluing the crown back on (it was a molar), I managed to glue my fingers to my tooth! So here I was with my mouth open and my hand stuck in my mouth.
I'm laughing now just remembering how ridiculous the whole incident was. LOL!
So, I'm hoping that once you get through this sad spot, you can look back and laugh about it some day.
Take care of yourself. Remember to put the oxygen bag over your own mouth first before helping anyone else! :rofl;
Aleta
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I still have that cassett and saw where Dewayne was still with them during those Songs. Oh yes, the Domino's, but "Acid Rock" was more my thing back then. I love lead and bass guitars. Deep Purple I loved because of the "Bass" in their music, and Led Zepplin with Jimmy Page and Allman Bro's with Dewayne simply awesome! Not to forget the Great Jim Hendricks and his talking guitar "Marshall".
A long the way I kinda like some of the "folks" songs by Joan Biaze and Carly Simon. Then the "Rock Blues" by Janice Joplin and Buddy Miles. Oh the memories!!!
lmunchkin
:kickstart;
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And now for the REALLY funny ending to the story. After I got back with that glue, and tried gluing the crown back on (it was a molar), I managed to glue my fingers to my tooth! So here I was with my mouth open and my hand stuck in my mouth.
Aleta
You crack me up!!!!
lmunch
:kickstart;
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I HOPE YOU FEEL BETTER TEXAS. I WISH I CAN SAY SOMETHING TO LIFT YOUR SPIRITS BUT BY READING YOUR POST IT JUST DESCRIBED EXACTLY WHAT I FEEL EVERYDAY OF MY LIFE. I ALSO READ YOU WERE SAYING SOMETHING ABOUT A SUPPORT GROUP IN THE PHILLY AREA. IF YOU EVER FIND ONE PLEASE LET ME KNOW. I BEEN SEARCHING ALSO..
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Anitar, give me a couple days because I will try to get as much information as possible and yes, I will post. Just by the responses I've gotten so far, I am already giggling and feeling better. WE KNOW how YOU feel. Some days are hard as heck, others so so, and other not to bad. But what helps best for me is to laugh. Yes, crack up when ever you can. You need time to take some special care of YOURSELF. Put on a good song and crank it up if that's what you like. Or, at the end of the evening, sit alone in some quiet time, reading a book. I understand "The Help" is quite popular now. One of my faves is Tuesday's with Maurie. Garden, cook, what ever is going to make you feel good. Life in general regardless of kidney related issues sure requires us to get some "me " time anymore. Willow, oh you and that tooth! lol That's so funny. I'll be waiting to see that episode on one of those Emergency room shows lol. That's crappy that it took you to break down to get someone to notice that you have needs too. I guess that's part of our job just by being a caregiver or a"loved one". Because we love, we put our needs aside. I'm sure in more ways then we even realize, out loved ones who are receiving the dialysis are doing their best to put our needs first too the best they can. We're only human and we're all trying to make this work out in our little weird way I think. I feel a ton better by the way already!
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texasstyle,
your husband is SO LUCKY to have you. To have someone who loves him enough to join in the pain far enough to really feel it too. Kidney disease has more victims than just the ones who actually "have" it. You and your husband have this disease together because you love him in a true way. And because you BOTH "have" it, you need to be aware of keeping yourself physically and emotionally well. That is the best thing you can do for the both of you.
I'm sending my best wishes. Keep the music going!
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Boy oh boy you guys.... i went from reading your first post txSty and feeling sooooooooooo in the 'know' of how ya feel, and was just gonna respond with, "i understand" and a big sad face to go with i t :'( ,, then i start reading all that other stuff and found myself smiling too ;D.. lol... What a range of emotions in this one post :laugh: Thats "our" life isnt it :grouphug; And...... just so yaall know, i sat backstage with Janice Joplin back in the day. Yep, my bf (hehe, Bo, my hubby) got us back there and we sat with her while she danced around us before going on stage.. Great memory.. For the others,, i chuckle cause at least you guys remember them..tee hee.. I never could remember names of BAnds.. I loved Joan Bies and that stuff mostly. Was the love and peace chick floating around watching the world be silly. (pill/drug phobe so just got to watch lots of the sillyness that they brought to others..lol) Anyway, lOVED reading ALL the funny stuff and memories... Bless ya all, we are in this together :grouphug;
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You Oldies make me giggle!
*runs away quickly before Texies guitar comes crashing down on my head*
How are you today Tex?
*huggles*
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Tex hope you are feeling a little more up beat to-day. I know exactly how you feel. Some days I look at my husband and think why have I got to do every thing He gets so frustrated about not being able to do, I get fuc*** frustrated because I do. I have days when I want to run away, so I go shopping and then feel guilty about doing that. My husband like yours sleeps a lot too. He gets up about 8 back in bed for 12 up again at 3 and in bed for 9 our bed is never cold. I have even thought about going in the spare room but it is bloody cold in there and I would not hear him in the night. He has not chosen this dialysis crap and we have had lots and lots of good years so we must be going into the bad ones, only joking. I had to smile, our GP's nurse got in touch last week, she is running a committee of different age groups, about how they can improve the surgery, she said that I would be a good member because I would say what I think. I wonder what she means Lol.I definatly will join this. I hate the dark nights, so that does not help my moods. The wine seems to beckon more and more. Take care my friend.
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:cuddle;
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Man do I know how you feel. It just never seemed to slow down and I couldn't ever catch a break. If I got so overwhelmed that I snapped, then I felt guilty as anything. This is our life, this is how we've learned to live. I have to say that I'm so lost not having that responsibility anymore, but I guess this too will pass with time.
I'm sending you warm hugs, hopefully this will pass quickly for you and you'll feel like your old self. :grouphug;
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TS (and all the rest of you dear friends..) this thread has made me both cry and then laugh. I had been fizzling downward lately and so had not been posting, just reading. Life has been pretty crappy for us for the past few months. But reading this...I could SO relate to Tx...then Munch, then Willow, then Fearless, BW,Poppy, BB, Rusdock, and our dear KC. By the time I got past the image of Munch and her meds, Willow with her hand STUCK in her mouth, BB with the wine glass sitting in a really COLD room...well, it just made me smile and feel all warm inside. Tex...thanks for posting so we can all be together in this (as BB says) shi#$y disease.
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It is good to hear from you Looney! Hope all is well with you! Did they ever get his access straightened out?
J. went to clinic today to be told his latest labs are excellent, but the one PTH was higher than they liked, so he picks up another Med. (Shucks!!)
But they are there for a purpose, right?
Just enjoying the "Peace" with it all, waiting and wondering, what's next, but just being here in the NOW! God is Good, so I will rejoice and be glad in it!!
How has your hired hand been doing? I know he was a Blessing to you and Hubby! Especially to you!!
lmunchkin
:kickstart;
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Thanks for asking, Munch but no...hubby's acess is still not a "go". We were able to use it for a few weeks but only for one line. Right now, we are back to the catheter. Hubby has been very sick for the last few weeks. But we are taking one day at a time and each night turns into a new day. The hired hand is working out great and I thank God every day for him.
Tex, I'm hoping you are in a "happier place" today. :grouphug;
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How are YOU today texie?
*huggles* (< for everybody)
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TS (and all the rest of you dear friends..) this thread has made me both cry and then laugh. I had been fizzling downward lately and so had not been posting, just reading. Life has been pretty crappy for us for the past few months. But reading this...I could SO relate to Tx...then Munch, then Willow, then Fearless, BW,Poppy, BB, Rusdock, and our dear KC. By the time I got past the image of Munch and her meds, Willow with her hand STUCK in her mouth, BB with the wine glass sitting in a really COLD room...well, it just made me smile and feel all warm inside. Tex...thanks for posting so we can all be together in this (as BB says) shi#$y disease.
This. I'm so glad I can come here and lurk sometimes. God know our lives aren't that bad (the bf hasn't really been "sick" and is doing well on pd) but can the damn ride stop and let us off for a moment? I am tired of waiting for results, waiting for phone calls, making decisions about things I don't know much about, being in-between all the time. I can't find a job so I have little to distract me from cooking and cleaning. I can't go shopping cause there's no extra money. My friends invite me out and I can't or don't go. I have nothing nice to say anymore. But the thought of someone gluing their fingers to their molar put a smile on my face! :clap;
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Awwwww drgirlfriend, how simple the "simple" things in life that lift us up become.. ..hehe Yes, this is a great place to make us feel a bit more 'normal' with how our lives have changed. Glad ya got in on this post so you got your smile for the day :flower;
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When My Husband, was Sick, People would Call and the First thing, they would say is " How is Ron Today?" I have a Sister-In-Law, that was a Hospice Worker and when She would Call, the first thing, She would say was " How are You doing Today, Hon? " She had seen and knew, how Difficult, the Life of a Caregiver, can be. I will never, Forget, Her Kind and Special Words.
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(((((Mizar))))) Nice to see you, and yes, it is the kindest thing our families can do to at least once in a while, ask about us, the partner. Hope your doing well Mizar :cuddle;
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Our nurse pops in a couple of times a month, just for a chat and to take bloods.She always looks at me and than asks how I am before she asks hubby, bless her. She retires soon and I will so miss her.
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Today is much better thankfully and sorry I didn't get back sooner. As I too read the threads and their responses on all the different topics I can see how people can "relate" to them. The story may not be exactly the same, but there is something in them that pertains to you. We're learning from each other. I have started several of my own projects ans I'm so glad I did. I am "letting go" so to speak, and living my life too. No, I'm not abandoning mys spouse of course, but it's that long over due "me" time. I think my husband is kinda glad to see that happening, but at the same time I think he's soused to me always being nearby that he feels not right I guess you could say. Hmm... Getting back into the things that i need to do have also given us something to talk about except for the
how you feeling?, how was dialysis?, what's going on, are you dizzy? lol. I kinda think he likes the change of conversation too. It's weird how your life gets so wrapped up into the kidney world. Did some shopping yesterday for Christmas with him and it was a good day. he didn't sleep all night so it might be a totally different day today. We'll see. Enjoy the rest of your weekend!
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TS, While Carl was on dialysis, we made a pact to spend at least 15 minutes of that time talking about things not related to D. That doesn't sound like much time, but it often stretched into much MORE time than that. And it really gave us some "together" time besides just being the care-partners.
I'm glad you are taking care of your "me" time. That is essential for your ability to be there for him.
:grouphug; :grouphug;
Aleta
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Tex, I'm glad to hear things are a little better now. And, yep, the "me time" will help a lot, both with how you feel and how you and your spouse relate to each other. Keep smilin' gal...hugs are coming your way! :cuddle;
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I'm laughing and crying (again lol). I'm glad we got to let a loose here. Anyway, ...... we must know more about the Janis thing! Oh Please! Was she a tiny girl, was she polite to you, waht was she wearing, what did she say.....? Inquiring minds want to know! lol And, do you have any pictures of that? I know..seems when something special special really happens we never have our camera lol.