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Author Topic: Sick and tired....  (Read 3709 times)
cattlekid
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« on: March 17, 2012, 05:16:08 PM »

....of being sick and tired.

I know it sounds trite, but I just had a massive wave of sadness come over me when I was finishing up my treatment tonight. 

I'm tired of not being able to just go and do, it doesn't help that it was 81 degrees here in Chicago today and I should have been outside working in the yard or taking the dog to the park - but I was stuck inside doing my treatment.  I guess I should be happy that I can do them on my own schedule (home hemo) but now that spring is around the corner, I am starting to feel the burden again.

It didn't help that DH told me that my ILs will be coming over at some point to help do spring yard cleanup.  My FIL is 78 and MIL is 66.  Neither of them need to be doing my yard work - I would much rather hire a neighbor kid like I did last year.  It makes me feel mad and inadequate that I have to rely on others to take care of my home.  Maybe because in my entire life, my parents never hired anyone to do anything around the house unless it was major electrical work.  Everything else, they did themselves.  Cue the feelings of inadequacy again.....

So what do you all do when these feelings hit?  I know they won't get any better when I get a transplant as that will bring its own set of challenges. 

And if you've read this far....thanks for reading.   :thumbup;
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kitkatz
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« Reply #1 on: March 17, 2012, 05:34:50 PM »

Sigh!  Oh I know how you feel.  Waves of craziness get to me, too.  Life is not normal and never will be normal. Sigh. 

All I can say is some days are better than others.  :thumbup;
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lifenotonthelist.com

Ivanova: "Old Egyptian blessing: May God stand between you and harm in all the empty places you must walk." Babylon 5

Remember your present situation is not your final destination.

Take it one day, one hour, one minute, one second at a time.

"If we don't find a way out of this soon, I'm gonna lose it. Lose it... It means go crazy, nuts, insane, bonzo, no longer in possession of ones faculties, three fries short of a Happy Meal, wacko!" Jack O'Neill - SG-1
boswife
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us and fam easter 2013

« Reply #2 on: March 17, 2012, 05:48:36 PM »

read all the way through and feel it.......all the way through... :(  im not ON the D, but my life is no less controled by it .. I feel such sorrow when i look at hubby and he's sitting with his head down feeling low about it all.  I feel hurt with worry that i cant fix him :(    .. Cant wait for it to lift as im sure it will..... For all of us on this rollercoster.   :grouphug;
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im a california wife and cargiver to my hubby
He started dialysis April 09
We thank God for every day we are blessed to have together.
november 2010, patiently (ha!) waiting our turn for NxStage training
January 14,2011 home with NxStage
okarol
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« Reply #3 on: March 17, 2012, 06:00:26 PM »

 :cuddle;
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Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
Cordelia
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« Reply #4 on: March 17, 2012, 06:09:44 PM »

Focus and zero in on the things that I CAN do, not what I can't do       :)

That's what helps me     
« Last Edit: March 17, 2012, 06:11:44 PM by Cordelia » Logged

Diagnosed with Polycystic Kidney Disease at age 19.
Renal Failure at age 38 (2010) came about 2 hrs close to dying. Central line put in an emergency.
Began dialysis on Aug 15, 2010.
Creatine @ time of dialysis: 27. I almost died.
History of High Blood Pressure
I have Neuropathy and Plantar Fasciitis in My Feet
AV Fistula created in Nov. 2011, still buzzing well!
Transplanted in April, 2013. My husband and I participated in the Living Donor paired exchange program. I nicknamed my kidney "April"
Married 18 yrs,  Mom to 3 kids to twin daughters (One that has PKD)  and a high-functioning Autistic son
MaryD
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« Reply #5 on: March 17, 2012, 06:37:32 PM »

I hear you cattlekid.

I have just organised for someone to come and clean for me every fortnight.  Me - who six years ago used to carry railway sleepers to edge garden beds, and lay heavy pavers, and run about on the roof checking for leaks after storms.  I had always done everything around the place except electrical work.  Now I can't even change a light globe any more.

Part of my problem stems from either chemo or the antibiotics I was given during the chemo.  As well as a legacy of peripheral neuropathy, my long nerves were damaged.  If I'm tired, which is frequently, I walk as though I'm drunk.  I can't grab things - like a cleaning cloth, or hold a cup of coffee with confidence.

When I'm feeling miserable, it's hard to get my act back together again.  Concentrating on the good things in life certainly helps.  I don't think if someone is truly depressed it would improve things though. 

Someone coming in to clean will free up what energy I have to potter in the garden which I love doing, and finish unpacking from my move 18 months ago.  But it is huge step in the "I'm finding it hard to do things" admission.

Your in-laws are probably pleased to be able to help out, and you can always re-hire your neighbourhood kid as well so that you don't wear out your in-laws.
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amanda100wilson
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« Reply #6 on: March 17, 2012, 06:46:36 PM »

 Never really came up with a solution myself for this.  My MIL ticked me off the other week.  She has recently had cataract op. and has to have six additional weeks of eyedrops.  I had, out of politeness, phoned to ask how she was doing, but for about ten minutes, regales me with how she's fed up with doing them, that they can't go out for long because they have to get home to do the eyedrops. I bit my tongue, other than to suggest that she could do the drops when she is ou, but meanwhile thinking, 'what are you moaning about, how insesitive are you in doing so?' when my treatment isn't something that takes seconds to do, is something that is transient, but may be for the rest,of my life.  Even drawing,up my heparin takes longer than instiling her eyedrops.  Some people just don't get it, but, Cattlekid, I get where you are coming from completely and totally empathis with you.  :cuddle;
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ESRD 22 years
  -PD for 18 months
  -Transplant 10 years
  -PD for 8 years
  -NxStage since October 2011
Healthy people may look upon me as weak because of my illness, but my illness has given me strength that they can't begin to imagine.

Always look on the bright side of life...
jeannea
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« Reply #7 on: March 17, 2012, 06:49:07 PM »

I think I've gotten past this. I need help. I ask for help. I take help. But I think DH should listen to you and maybe in compromise you can go back to hiring someone.

It sucks the way dialysis makes us feel. Very frustrating. I'm sorry you feel crappy.
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cattlekid
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« Reply #8 on: March 17, 2012, 07:47:56 PM »

Had a nice dinner and talk with DH - feel a bit better.  I told him what I was feeling - that I feel inadequate that I can't care for my own home and frustrated that I will now "owe" my ILs for this work that they will be doing.  He told me that it's absolutely not true - they know that I am sick and can't do everything that I used to do.  I just have to remind myself that when they want to "help" they are doing it out of love and not from a place of judging.  And I have to keep my boundaries about what I will allow them to do and not do. I know I'm going to need them when I get a transplant and I can't be burning bridges at this point in time.
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AnnaLee
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« Reply #9 on: March 17, 2012, 10:16:04 PM »

As time wears on with this dialysis thing...I'm discovering more ways of digging myself out of the black holes I find myself in.  Like when I look at my dog and feel guilty that he has gotten so fat because I can't take him out for long walks like I used to. Or when I find myself not asking Friends over for dinner because my house isn't tidy enough or I'm too tired to cook. The last black mood I found myself in, I found my way out by buying a mascara that was black with gold flecks in it. Never mind that I am old enough to be a grandmother, getting something silly like that made me feel young and fun, not old and sick. Another time, I bought a T-shirt that said "too tough to die" that I wear at the times I feel like giving up. Besides the obvious "retail therapy" (aka shopping addiction), I sometimes just sit in the sun and wait for it all to pass as I know it always will. Hang in there, cattlekid, like you, one of the worst things for me is having to ask for help or even to accept it when it is volunteered. I only hope that somehow or some way I'll be able to pay it forward.
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billybags
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« Reply #10 on: March 18, 2012, 03:53:23 AM »

I totally agree with every one, I am the carer and it breaks my heart to see my husband not being able to tackle even small things, like unscrewing a jar or bottle because he hasn't got the strength any more..Mind some of these bottles are bloody lethal. He can not do loads of things like before. Decorating, we have had to have some one in to do this.gardening, he starts it and does a bit then I have to carry on, I can not manage it so I will have to have a gardener and OK we are not young but it is so frustrating not being able to do small things.I sympathies.
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chook
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« Reply #11 on: March 18, 2012, 06:28:43 AM »

Cattlekid, you teared me up. My Dad always said those exact same words. He was on home haemo for four years before he died. In a round about way, you gave me a moment with my Dad where I could actually hear and see him say those words. Thanks for that.
Acceptance is a difficult thing. I'm sad for your battle to accept that you cannot be as active as you'd like to be. Try and find joy and pleasure in other things - easier said than done, I guess.
 :cuddle;
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Diagnosed PKD 1967, age 8
Commenced PD June 2010
Commenced APD July 2010
Transplant March 2011 - so lucky!
"To strive, to seek, to find...and not to yield!"
cattlekid
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« Reply #12 on: March 18, 2012, 09:24:07 AM »

Hee, hee!  I am with you on the retail therapy.  I went shopping yesterday for the first time in a long time.  A local department store had a Goodwill sale....for every item you brought in to donate to Goodwill, you got a 20% off coupon that you could use on anything, even the big-name stuff.  So I took in 14 items and got 28 coupons!  Double coupon day. 

I only used a few but I did buy myself a real splurge...a tangerine-colored purse!  Tangerine is the color of the year according to Panetone.  So I figured for once I could jump on the trend bandwagon.  I know I will definitely smile every time I pick it up to head out the door.

And then to pay it forward, I gave a handful of the coupons to the pharmacy tech when I stopped in to pick up a prescription on my way home.   :2thumbsup;

As time wears on with this dialysis thing...I'm discovering more ways of digging myself out of the black holes I find myself in.  Like when I look at my dog and feel guilty that he has gotten so fat because I can't take him out for long walks like I used to. Or when I find myself not asking Friends over for dinner because my house isn't tidy enough or I'm too tired to cook. The last black mood I found myself in, I found my way out by buying a mascara that was black with gold flecks in it. Never mind that I am old enough to be a grandmother, getting something silly like that made me feel young and fun, not old and sick. Another time, I bought a T-shirt that said "too tough to die" that I wear at the times I feel like giving up. Besides the obvious "retail therapy" (aka shopping addiction), I sometimes just sit in the sun and wait for it all to pass as I know it always will. Hang in there, cattlekid, like you, one of the worst things for me is having to ask for help or even to accept it when it is volunteered. I only hope that somehow or some way I'll be able to pay it forward.
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cattlekid
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« Reply #13 on: March 18, 2012, 09:26:43 AM »

Aww, chook, now you've made me tear up a bit myself! 

Home hemo is a wonderful thing but after six months, I think the grind is getting to me a bit.  Luckily today is another beautiful day here in Chicago.  DH went to a bowling event with the Lions club so I am home enjoying the open windows and puttering around.  Probably should get some laundry done and straighten up a bit around here....it always looks like a bomb went off at the end of a work week. 



Cattlekid, you teared me up. My Dad always said those exact same words. He was on home haemo for four years before he died. In a round about way, you gave me a moment with my Dad where I could actually hear and see him say those words. Thanks for that.
Acceptance is a difficult thing. I'm sad for your battle to accept that you cannot be as active as you'd like to be. Try and find joy and pleasure in other things - easier said than done, I guess.
 :cuddle;
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kitkatz
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« Reply #14 on: March 20, 2012, 10:07:18 PM »

Need cheering up Going looking for a pink unicorn tomorrow. 
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lifenotonthelist.com

Ivanova: "Old Egyptian blessing: May God stand between you and harm in all the empty places you must walk." Babylon 5

Remember your present situation is not your final destination.

Take it one day, one hour, one minute, one second at a time.

"If we don't find a way out of this soon, I'm gonna lose it. Lose it... It means go crazy, nuts, insane, bonzo, no longer in possession of ones faculties, three fries short of a Happy Meal, wacko!" Jack O'Neill - SG-1
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« Reply #15 on: March 21, 2012, 01:13:54 AM »

Know and understand the feelings you are having. I have always been a home cooked meal, home made apple pie sort of a person, now, its a lemon pie from Wal-mart and a frozen sandwich. At best. Plus the housework, it so badly needs to be done and I just can't do it. I have to admit I just can't and let some one else take over the reins, or just let it go. Sometimes when I really need a break, it's off to Mickey D's, for a 6 piece chicken Mcnugget and a sweet tea. Calories be damned!!!
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One day at a time, thats all I can do.
Whamo
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« Reply #16 on: March 21, 2012, 05:01:17 AM »

I think that's a common thing among dialysis patients.  They get sick and tired of being sick and tired.  For me it's a constant battle to try and stay healthy.  I dread Mondays because I know they're going to drain as much as they can out of me.  Other than that, I've adapted fairly well to dialysis by following the renal diet, with an emphasis on egg whites to keep my protein levels up and my phosphorus level down.  I've found that walking three miles really helps me feel better, too.  I've also found it helps to watch the fluid intake like a hawk.
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amanda100wilson
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« Reply #17 on: March 21, 2012, 06:38:27 AM »

For the last four years that I was on PD I had the time to do my chores, but not the energy, now I'm do Short daily Hd, I have the energy but not the time!  Bah, short daily - may be relative, but it sure is a chunk out of my day.  Now to just persuade my neph. to letme do extended so I can get my life back!
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ESRD 22 years
  -PD for 18 months
  -Transplant 10 years
  -PD for 8 years
  -NxStage since October 2011
Healthy people may look upon me as weak because of my illness, but my illness has given me strength that they can't begin to imagine.

Always look on the bright side of life...
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