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Sjogrens Topics => Living With Sjogren's => Topic started by: kellyptyler on August 17, 2010, 03:39:49 PM

Title: you're doing too much
Post by: kellyptyler on August 17, 2010, 03:39:49 PM
Okay..the other day I fussed because people always say "you don't look like there is anything wrong with you" I'm going to fuss because my husband is constantly saying "you are doing too much"...:) I know not much to fuss about. But, I had to quit work, and all day all I do is day to day stuff around the house. I love him because he cares and he's wonderful but when you feel awful sometimes things just get on your nerves...okay my rant is over for today. ;D
Title: Re: you're doing too much
Post by: puccini914 on August 17, 2010, 03:44:26 PM
Kelly, I can totally relate.  Mine says the same thing. However, if I'm having a huge flare, the dishes stay unwashed in the sink, te floors stay dirty, the cothes stay unwashed until I get better.
Title: Re: you're doing too much
Post by: Joe S. on August 17, 2010, 05:26:03 PM
Just do what you can. Know your limits. Avoid any flairs. Take some me time.
Title: Re: you're doing too much
Post by: harlin on August 17, 2010, 06:01:25 PM
Kelly, my husband says the same thing to me!! On Monday I totally crashed. I unpacked some clothes and took a nap. unpacked somemore, napped again. He got up from sleeping and said "you don't have to finish all this today", well I did then I napped again.
I did walk 2 miles tho.

I guess it is nice to have them notice.
Title: Re: you're doing too much
Post by: Suzie on August 18, 2010, 12:30:41 AM
Isn't it great when they actually get it?

My husband learnt that life was WAY better for him when I was able to rest regularly, instead of pushing on through till I crashed.

Better to take a 2 hour nap each day than end up spending 2 days in bed feeling like death, and wishing for it.

He actually reminds me to go take a nap 2 hours before the kids are due home from school.

It's not as selfless as it seems. If I crash, he's the one left holding the fort. And that kind of caring sweetness works in his favour in all kinds of ways  ;)

I wish everyone's nearest and dearest took this approach to living with us sufferers of chronically exhausting illness.

Title: Re: you're doing too much
Post by: BonusMom on August 18, 2010, 06:18:49 AM
At least your husbahd's notice.  The only thing my husband notices is if dinner isn't on the tsble and clean clothes aren't in his dresser. Whether I feel well or not, life goes on.
Title: Re: you're doing too much
Post by: navydad on August 18, 2010, 11:24:48 AM
I feel for the people here whos family and friends just dont get it,,, I am in the same boat,, I wont bore everyone with the details,, most know it,,, but again,, they just dont get it,, I had a ENT appt yesterday,, and like my post about it not much was done,, but today my ear hurts more then ever,, I cant touch it,, the neuropathy is through the roof and the guts are just not working,,

  I have the furnace fan running just to move some air around,, and just the air blowing across my legs is killing me,, I get so tired of the same routine every day,, but my hands stop me from doing much,, and like a fool,, I try to do to much and I am in a sky high flare for weeks,,, I would nap but my ear hurts to bad and the thick mucos is worse then ever,,, I start 10 different things every day and never finish anything,, my friend commented the other day,, why cant he sit still while watching a movie,,, my wife said oh hes just like that,, truth is,, I cnat sit to long,, I start to burn,, I start to want to take the bridge,,
  Its so hard NOT to want to do to much,,, I never had anyone here tell me to slow down,,, and if I tell everyone I am going to bed at 7PM,, I get either,, Its only 7,, or,, ok,, I;ll talk to you tomorrow,, then its off to another night of he**,,
  I admit to crying during the day,, crying when I go to the garage and see tools I cant use,, my wife asked me for some pliars to take to work to put those things they hang clothese on,, I gave her my best pair,, i cant use them anymore,,
  DO we do to much?,, ya, I guess we do,,, some have learned to not cross that line,, I havent,, my wife came home from the post office the other day,, and handed me a catalog from Cabelas,, ( a hunting and fishing super store),, I tossed the thing on the table and she said,, you love those magazines,, I sort of lost of,, I told her look,, I cant use my hands,, I can barely walk,, and do you actually think I would trust myself with a loaded weapon in my hands,, even last year when I was getting worse,, I had to have my brother drag out two deer I had shot,,, man the days of just tieing a rope around them and almost un out of hte woods are long gone,,
 BUT YOU DONT LOOK SICK,,, yesterday the ENT said,, man your looking good,, some color in your face,, I suspect my blood pressure was sky high after waiting a hour in the waiting room,, and then the exam room listening to some old lady screaming while he took some wax out of her ears thats probably been oin there since 1960,, man did she scream,, but llike I always do,, I drift off topic,,, I dont know whats to much,,, I know one thing,, when we got home from mayo,, I knew things were getting worse,, and we were not, actually I wasent getting any help,,, So I decided I had to do some things I had been putting off,, I painted my shed,,, put some new lights on it,, relaced the doors that were rotted out,, then started to paint the house,, its a ranch so nuch in the way of ladder work,, but I eventually had to get my brother to fibish it,,
  Man did I pay,, I would wake up in the middle of the night,, fingers surled in,, no getting them straight,,, and they havent been right since, but i was having trubule before that,,, but its done,,, and I have been trying to put doen some new tile in the game room,, I can do a few and have to stop,, when I mean a few I am talking about 5,,, i did my kitchen floor three years ago,, 300 tiles and I had it ripped off,,, prepped,, baseboard off,, new tile down,, all in a week,, most of it after work,,, now i;m lucky if I can sweep it without falling over,,,
  one of my biggest peeves is my dauschund,, now I love him to death,, but at least 20 times a day he;ll come over,, get on his hind legs and beg,, that might mean two things,, bathroom time,, or hes conning me to gooutside and look for rodents,,, he got a mouse in the garage this moring,, but I just hate leashing him up to get dragged around the yard,,, even that is to much,, how did it get so bad that you cant even walk your dog,, but dont worry,, they have pillls for it

  I sometimes wonder what people with SS did in the past,, I guess theyjust got up,, grabbed the plow,, suffered beyond belief,, took care of the kids,, and were expected to do it all,, I think they called it hysteria when it got to be to much for them,, now we hear,, shes had a psychotic eposide,, no,, I just hit the wall, and anyhting I sat at this point is not going to make any sense,,, which brings me to my last story
   After leaving the ENT;s office,, It was about noon and I was thinking,, you kow you really havent eaten much the last few days,, SOOOOO,, I stopped at Wendys,, now it took me 5 minutes to figure out how to shut the car off,, find the entrance to teh store,, and then see a line of people who have no clue what they want, I get to the counter and Ilm looking at the menu and I might as well have been looking at blueprints to buils a rocket ship to mars,, I just blurted out,,, friend fies,,, what aize?,, ahhh,, medium,, and ony reason I said that was becasue we had steak on sunday and I like mine med,, so it was stuck in my head,, want anything to drink,, nah,,, thinking I had water in the car,, I didnt,,, anyway,, I came out of there feeling like a idiot,,, and my legs were rubbery and I was bouncing off the cars in the parking lot,,
 Over doing it,, ya sure,,, I;m to the point that my last MRI said,, some mild brain shrinkage,, what ever that means,,
Title: Re: you're doing too much
Post by: kwolfsheimer on August 18, 2010, 12:42:51 PM
Hello Kelly!! I'm Kelly too.

Yes-- my husband says that all the time.  "Just say no,"he tells me.  It's true, but I've learned to cut back.

I had a doctor tell me right before I was diagnosed that I should quit my job.  "You do too much," he said-- now granted, he never questioned me about my work schedule.  My husband was sitting right there and I don't know if he cornered my doc (when grilled later, he said no).  Of course, I responded with "if this were my husband sitting here, you wouldn't tell him to quit his job."

I could go on about this "wack-job"  and what he told me, but I noted with some satisfaction many months later when I received a notice in the mail that he was moving to North Carolina.  Then i heard that he had been asked to leave the practice.  There is justice!!

I am waiting for the day when I can just do nothing!  It seems like the system-- my insurance, doctors-- would try to support my efforts to stay employed and active as long as possibly, but not really. 
Title: Re: you're doing too much
Post by: puccini914 on August 18, 2010, 01:22:27 PM
I have a 3 year old and a 7 year old, both boys.  I am the only one who does any cleaning in the house.  I also have two dogs and a cat that has never learned that cats are supposed to be tidy creatures.  I have a choice do too much or live in a pig sty with bugs.

 We went on a trip in June to Miami for 10 days.  We had neighbors staying in house to take care of the animals and have a mini vaca themselves.  There are way too many people crammed in their tiny little house.  Anyway, apparently, I'm much more picky about my cleaning then others are and I came home after only 10 days and actually had roaches in my house.

 I've lived in Blue Ridge, Ga for almost 10 years and never had roaches in a single house I ever lived in, I've been in this house for 4 years.  I hate bugs.  I like clean.
 Like NavyDad, my hands are shot as well.  What cleaning I do get done, has to be done during the 2 hour peak in the Lortabs.  So yes, I overdo it because I have to speed clean before the peak wears off, because I then have to wait another 2-3 hours before I can take the next dose and by then I'm too wiped to do anymore.
 Talk about a rollercoaster ride.  This makes DH mad to see me run around like this, but when he tries to clean, he cleans with the diligence that my neighbors did and has all the bugs sending out invitations to the feast.

  Sometimes it's just what we have to do.  I also do it to keep down the germs in the house.  With the Methotrexate and the prednisone I can't afford to allow Little cess pools of bacteria to set up shop all over my house.
 My DH doesn't understand that kind of biology and I hate to make him feel like a kid trying to explain it to him.  It's easier to just clean it myself then to turn it into a discussion or argument.  I guess I do too much all the time.  But I'd feel pretty useless if I didn't.
Title: Re: you're doing too much
Post by: cosmi on August 18, 2010, 01:47:33 PM
I'm new and this is my first post.  It's interesting reading each post and comforting to know that I am not alone in my pain and can express my frustrations and my joy with those who understand.    I understand the days when only 15 minutes of the household chores get done and 2 hrs of rest is needed and the next productive increment of productivity may come or may not.  That's me!  Those days are more than less.  I just retired from my job because the stress was overwhelming and worsening my symptoms caused by SS and Lupus. 
I, too, am most fortunate to have a dear husband who makes no demands on me because he knows my diseases are my reality....and I have educated him on my illnesses.  This is a very debilitating illness and most people do not understand the lack of motivation due to the depression that also accompanies this disease because we simply can't do what we used to do.  I at times, feel useless....but realize God still has a purpose for me or I would be gone.  His strength on a daily basis keeps me going ....  there are days with God's help I make myself get out of the house and go visit someone in worse health than I or someone who needs cheering up.   This takes my mind off myself and empowers me to better handle my own health issues.
I realize not everyone can do this...sometimes I think I just can't today....but I usually feel better once I get my joints (ouchee big time) moving.... but I always seem to be blessed by my efforts and it definitely helps my mental outlook as I deal with these debilitating diseases.   God bless each of you and I'm so glad I found this site.   
Title: Re: you're doing too much
Post by: Katybarstool on August 18, 2010, 02:00:42 PM
Hi Cosmi

Welcome aboard. If you copy and paste your posting into a new topic, more people will see you and welcome you.

I'm glad your faith helps you - I feel that way too. Fortunately, I'm still able to work, but I don't know for how long.

Looking forward to getting to know you.

God bless.

Title: Re: you're doing too much
Post by: harlin on August 18, 2010, 06:51:19 PM
You know honestly my friends, I am afraid to do nothing. I am afraid that if I do nothing I won't be able to do anything ever again. That is why I keep pushing. I am scared silly. I don't want to end up in a wheel chair and can't move. I have a new grandchild on the way and 2 granddaughters. I want to move for them and me. I want to be part of their lives growing up. I am scared I won't be around to do that. Tomorrow I will call about my blood tests pray for me please.
Love you all, you are my family, harlin
Title: Re: you're doing too much
Post by: PrincessLeah on August 18, 2010, 07:30:18 PM
I hear ya.

When my system went haywire, I was working fulltime+ (50-60 hour weeks) and working on a second masters in computer science.

On March 8th, my system basically shut down, and that was it for me.

My job is technically demanding and requires a lot of eye strain (8+ hours/day on a microscope.)  Because it's in a lab, it's a very cold, dry building (they have to keep it that way to keep the instrumentation and equipment working.)

I actually had a rheumatologist tell me there's nothing about my condition that would preclude me working.  She had my Schirmer's test results sitting in front of her (0-0).  What?!?!?!

I went from being the busiest person (literally 18+ hour days with school) to being able to do nothing in the space of a day.  Talk about a lifestyle change.  Now,  I try to do a lot of things to keep my mind from dwelling on it -- taking care of my boyfriend, cleaning, etc.  Keeping busy keeps me from getting weepy.  The minute I stop, it all catches up with me.

Title: Re: you're doing too much
Post by: navydad on August 19, 2010, 08:22:48 AM
You know honestly my friends, I am afraid to do nothing. I am afraid that if I do nothing I won't be able to do anything ever again. That is why I keep pushing. I am scared silly. I don't want to end up in a wheel chair and can't move. I have a new grandchild on the way and 2 granddaughters. I want to move for them and me. I want to be part of their lives growing up. I am scared I won't be around to do that. Tomorrow I will call about my blood tests pray for me please.
Love you all, you are my family, harlin
Harlin,, you hit the nail on the head,, I too dont want to end up in a wheelchair,, I hope the bloodtest show something,, good or bad,, at least something,, let us know what you hear,, but from my experience,, they wont tell you,, or they say we;ll get back to you and never do,,, I push myself every day,, to the point my legs scream,, my hands scream,, I am scared too,,
Title: Re: you're doing too much
Post by: inga on August 19, 2010, 09:59:36 AM
Harlin, I feel EXACTLY the same way....I keep moving no matter how bad I feel, for fear, if I stop, I won't ever move again....and this winter coming on is really giving me a scare.  I push way past exhaustion, and the more I push, the better I LOOK!  But, I don't feel so well.

Also like hurts to sit still too....I have to move, because I can't sit...or lie down....things go numb too.  Ugh.
Title: Re: you're doing too much
Post by: navydad on August 19, 2010, 10:04:33 AM
Winter has me terrified,,, if the sensory stuff is this bad now,, I cannot imagine what true cold weather will bring,,, and I cant understnad why the sensory stuff is progressing so fast,,, from a insidious thing,, to a outright assult