i wish i could make them understand...

[angela515]

I can't seem to get along with my dad... and since I am living with my parents right now, we argue all the time.. everyday.    I am tired, and weak all the time.. i'm not really sure why... my blood levels are good, i take epo to maintain that, and my iron levels are normal... my protien is a little low but not too low that it should be causing me too be tired. I could literally sleep 24 hours if nobody bothered me... I wake up at 630 to get my kids off to school, when they leave at 730 I go back to bed and I set my alarm to wake me up at 1030-11 or I wont wake up until my kids come home... I feel so drained and i dunno why... so If I dont understandwhy, I sure dont know how to explain it to my dad... who comes home and starts bitching at me for being the laziest person he knows. Diches aint done, house and perfect, sweeping didn't get done, vacuumings didnt get done... I just cant do it everyday I am just so worn out. 

I only have to go to the doctor's once a month, except every 3 months I have 2 ho twice in 1 month. We live 26 miles from the hospital, and my dad complains when it gets close to the day I have to go... "take a taxi".. would cost me a lot of money to take a taxi over 26 miles to the dr's and thn back, and i dont got that kind of money. Sometimes I get so caught up in him complaining about going once a dang month I say fine, I'll stop doing dialysis, then in a few weeks, all you will need to do is drive me to the funeral home... but before that Ill be sure to writ in my abbit that i'm dead so you dont gotta drive m once a month for labs. Then he starts feeling bad and says well I just wish you would do somethin around here mre often and blah blah... *sigh* I really do try... its hard enough being a single mom and taking care of 2 kids with feeling this way I dont ven think about doing dishes and stuff when I got time by myself I just wanna sleep... Ahhhhhhhhh i hate esrd 

[Sara]

   I'm sorry.  I believe you when you say you are doing things to help out, but maybe he needs to see the actual action of it happening to believe it, if that makes sense. 

[Rerun]

I know you are tired, but you make an effort to do just 1 item a day.  If that is all you have to do to shut him up (oops -- make him happy) then do it.  I know you are tired but make it your "job" to do one thing a day.  You are living under his roof, so you have to try.

Throw a load of towels in the washer and dryer.  Fold them and put them away.  That is all for one day. 

You can do this.

[angela515]

Thanks guys    I just needed some ressurance I guess... lol, one of them days.

[angieskidney]

I find somethings can be done if you sit a lot. Don't stand. I know it seems off but I learned from first hand experience when I was at my worst before switching to hemo last year that standing tired me out. If I did things while sitting it was easier.

I really feel for you. When I lost my kidney and went on PD I was living with a man for 5 years who didn't understand and we actually broke up because I didn't have the energy and strength to do everything myself without his help. I truely understand and feel for you! 

Also what about disability. After all, dialysis is a LIFE-SUSTAINING THERAPY! You deserve some help! They pay for cab service (at least here) for ALL medical appointments including dialysis! That might make it easier. The more you HAVE to depend on your dad's health the MORE STRAIN and resentment there will be!

[Zach]

When I first started dialysis, I had so little energy, I couldn't even stand long enough to clean the plates after eating.
Your body is still getting used to ESRD.  It will improve over time.  I know you've heard this before, but exercise does help, a little at a time.

Rerun has a good suggestion, setting a goal to do one thing, and completing it.

I have a love/hate relationship with my bed. Sometimes I don't want to leave it. When I do want to leave, I try to get up, and it pulls me back down, under the warm covers and soft pillows.  It's a fight.

I usually end up winning.  Having work to do gives me the strength to fight off the bed.  But then there are times when the bed wins, and I sink deep under the covers.

[angela515]

I find somethings can be done if you sit a lot. Don't stand. I know it seems off but I learned from first hand experience when I was at my worst before switching to hemo last year that standing tired me out. If I did things while sitting it was easier.

I really feel for you. When I lost my kidney and went on PD I was living with a man for 5 years who didn't understand and we actually broke up because I didn't have the energy and strength to do everything myself without his help. I truely understand and feel for you! 

Also what about disability. After all, dialysis is a LIFE-SUSTAINING THERAPY! You deserve some help! They pay for cab service (at least here) for ALL medical appointments including dialysis! That might make it easier. The more you HAVE to depend on your dad's health the MORE STRAIN and resentment there will be!

I get SSDI, and I have asked about some type of ride assistance for my monhly doctor appointments, but because I live so far, there is nothing they can do, here at least. I schedule my dr appointments for Mondays only because thats my dads day off Sunday and Monday, so im not making him take off work, and he usually already is going to town anyways since its his day off to get groceries, so its not out of the way, im basically riding along because hes already going that way.... ah well, i'm hoping to pay off my tickets and get my license back soon so I can get a car again.

[jbeany]

I call it "walking under water" days.  Every step takes a physical and mental effort.  It will take an hour to vacuum a single room, since I have to keep sitting down to catch my breath.

I agree with rerun, too.  Make it a goal to finish one single chore. 

Unfortunately, angie, the US system usually won't pay anything for transportation - not even to dialysis, let alone doctor's appointments.  And it's extremely hard to find a program that will help with transport, unless you are a senior citizen who is no longer capable of driving.  Kind of the same logic my old insurance used when it paid for insulin but not needles.

[AlasdairUK]

You say your bloods are fine, but what is your HB (not just your hemotocrit) and Urea levels ?

It is a struggle, but Zach makes a good point about exercise. Start with one thing a day and fight going back to bed. The more you do this the less you will need your bed.

Just this morning as I was getting out of bed my pillow started a fight with me and knocked me out for another 20 minutes.

[BigSky]

When I first started dialysis, I had so little energy, I couldn't even stand long enough to clean the plates after eating.
Your body is still getting used to ESRD.  It will improve over time.  I know you've heard this before, but exercise does help, a little at a time.

Exactly! 

The only way you will build stamina is to exercise and only exercise.  Healthy or in kidney failure, people do not build stamina by doing nothing.

[angela515]

When I first started dialysis, I had so little energy, I couldn't even stand long enough to clean the plates after eating.
Your body is still getting used to ESRD.  It will improve over time.  I know you've heard this before, but exercise does help, a little at a time.

Exactly! 

The only way you will build stamina is to exercise and only exercise.  Healthy or in kidney failure, people do not build stamina by doing nothing.

Yah, I agree, and trust me, taking care of 2 kids who are 4 and 5, I get plenty of exercise chasing them. While they are at school, I am alone, and can rest, sleep.. whatever my body wants to do, because when my kids are home, I can't just go lay down when need be, I cant go to bed at night until they are in bed asleep, I must be up in the morning before them and so when I have a chance to just do nothing but sleep, I take it. I have insomnia bad, so I get a lot of sleepless restless nights... that dont help when I am already tired...

Now that the cold weather has come and its starting to snow, I will no longer be going outside unless I need to, because I get pnemonia easy. So I bought an exercise machine for inside, to give me something to do, but I get a lot of stair exercise as it is because my living room and bed room are in the basement, the kitche and dining room and kids bedroom are upstairs, so up and down the stairs I go all day and night, lol... my thighs feel it. 

[angela515]

You say your bloods are fine, but what is your HB (not just your hemotocrit) and Urea levels ?

It is a struggle, but Zach makes a good point about exercise. Start with one thing a day and fight going back to bed. The more you do this the less you will need your bed.

Just this morning as I was getting out of bed my pillow started a fight with me and knocked me out for another 20 minutes.

I dont know the numbers off the top of my head, I just know they are in normal range, as of last months labs anyways. I go for this months labs next Monday, so i'll get exact numbers then.  I agree, on nights I sleep, I will make myself stay awake in the morning and not go back to bed, and then im good for the rest of the day. However, like last night, I went to bed at 230 (Couldnt sleep) and had to be up 630, and I tossed and turned most the time I was in bed, so I did go back to be this morning.

[Bette]

Maybe you are a little depressed. In 2004, I got to the point where I barely wanted to get out of bed.  I would stay in my pj's all day or just get dressed to take my daughter to school.    I ended up starting on paxil and that helped alot.  I know that your tiredness is real, I have been there, but consider maybe depression can be making it worse.

[mcjane]

This is something like rerun suggested, but with a strict time limit.

About 20 years ago I was watching a TV show where a lady was talking about people who's house was in such a mess they were overwhelmed & just couldn't get started.

What she said was to choose just one job cleaning out drawers, closets, dusting, washing windows or whatever & spend 20 minutes a day, no more, no less on the job & before you know it your entire house will be clean & iin order.

I thought this was the dumbest thing I ever heard. What can you do in 20 minutes.
I never forgot it & 20 years later I thought why not give it a try, it's only 20 minutes a day & anyone can do 20 minutes. A miricle is happening.  I'm actually looking forward to getting back to what I started each day or even to decide what to do the next day. My house is looking pretty good & I'm even throwing away a lot of junk & even have room in drawers & closets that used to be overstuffed.  You will be amazed at what you can do in 20 minutes. I was.

I did I tried this when I first heard about it 20 years ago, but I didn't stop at 20 minutes I just kept going until I was tired & did nothing the next day or the next or the next.

 Ya gotta follow the 20 minute rule because that's what keeps you at your goal without quitting or getting bored.

Give it a try Angela. I think you can do it, just 20 minutes a day.

[angieskidney]

When I first started dialysis, I had so little energy, I couldn't even stand long enough to clean the plates after eating.
Your body is still getting used to ESRD.  It will improve over time.  I know you've heard this before, but exercise does help, a little at a time.

Exactly! 

The only way you will build stamina is to exercise and only exercise.  Healthy or in kidney failure, people do not build stamina by doing nothing.

Now that the cold weather has come and its starting to snow, I will no longer be going outside unless I need to, because I get pnemonia easy.

Oh man so do I! I had it twice just last year!! That is the 3rd time in my life having it and I am just 33! But even though in my country I get paid transportation .. I can't get any to work and must take my bicycle .. and snow is coming very soon! There is a cold front scheduled for this Thursday

I wish you the best of luck but man do I ever feel for ya and relate to you! 

last night, I went to bed at 230 (Couldnt sleep) and had to be up 630, and I tossed and turned most the time I was in bed, so I did go back to be this morning.

Maybe you have restless legs? I didn't know mine were so bad til Sandman told me what I was doing in my sleep  .. now the doc put me on meds and boy the first 2 nights did I ever sleep a lot!

This is something like rerun suggested, but with a strict time limit.

About 20 years ago I was watching a TV show where a lady was talking about people who's house was in such a mess they were overwhelmed & just couldn't get started.
....
I did I tried this when I first heard about it 20 years ago, but I didn't stop at 20 minutes I just kept going until I was tired & did nothing the next day or the next or the next.

 Ya gotta follow the 20 minute rule because that's what keeps you at your goal without quitting or getting bored.

Give it a try Angela. I think you can do it, just 20 minutes a day.

That is actually a very good idea!! 

[MattyBoy100]

Hi Angela,

I moved in with my Father about 5 months ago and it hasn't been easy on either of us.  I am used to being a single, independent, fit and healthy young man living his own life.  Me and my Dad have grated on each other's nerves a bit but fortunately, I work full - time so am out of the house a lot.  Too keep my Dad happy, even though he is retired, I help with the housework when I am off.

To start with however, my hemoglobin level was so low that I was anemic and all I could do was sit and fall asleep for hours at a time.  My treatment has helped combat this and I am no longer anemic.

My father is also of a generation that never really talked about their health in general and rarely going to see a Doc cos they believed aches and pains would just "get better by itself".

I am always talking about my health so my father knows my situation and my condition from day to day.  Is it possible for you to sit down with your Dad and have a heart to heart and discuss what is going on?  Maybe he doesn't understand your illness and because of this, he gets frustrated and when he feels frustrated, he takes it out on you or that's how it feels to you.  It's just a thought, but maybe he is afraid his daughter is ill and there is nothing he can do to help.

[angieskidney]

My father is also of a generation that never really talked about their health in general and rarely going to see a Doc cos they believed aches and pains would just "get better by itself".

I am always talking about my health so my father knows my situation and my condition from day to day.  Is it possible for you to sit down with your Dad and have a heart to heart and discuss what is going on?  Maybe he doesn't understand your illness and because of this, he gets frustrated and when he feels frustrated, he takes it out on you or that's how it feels to you.  It's just a thought, but maybe he is afraid his daughter is ill and there is nothing he can do to help.

That is a good point! I know that is how my mother is! I didn't realize I was like that as well but I am more like my mom than I realized. It almost killed me last year. I always thought of it as stubborness however.

I found that inviting my mom to my dialysis inclinic really made a difference. 

[kitkatz]

I like the twenty minutes a day idea.  That would not you out and it would get a project started.  I usually work until I drop or  whatever I am doing is finished.  A very tiring way to do things! 

[jbeany]

Add the 7 second rule to the 20 minute rule, and the house will get clean in a hurry.

The 7 second rule - if it's going to take less than 7 seconds to do something, do it now and don't put it off until later.  That applies to things like putting the cup in the dishwasher, tossing the clothes from washer to dryer, sorting junk mail from real when you walk in the door. . . .

It really helps cut down on the clutter build up.  We try to always use that one at my house - it seems to work.

[angela515]

Thanks for all the GREAT ideas.    Whehn I woke up this morning, I was so tired, by the time I got my kids off to school I was ready to lay down, but instead I took a shower and woke myself up and been doing little chores all morning.. yay. 

[Sara]

Good for you, Angela.   

[MattyBoy100]

Well done, Angela.   

If things get too much for you, you know you have friends on this site who understand what you're going through even if those around you don't.

Keep up the good work!

[DeLana]

(((( Angela ))))

Pp gave you good advice, actually I will try some of it myself (like the 20 minute and 7 second rules!)

I have heard from many patients how tired they are after dialysis (and before, during, even all the time...)  It's tough being a single mom, and living with your parents cannot be easy (even if your father were more understanding about your situation and health).  I hope things improve.

Wishing you the best,

DeLana   

[Zach]

That's great!!!!
You fought the bed and you won.

 

[kitkatz]

Whoo hoo!  Now go back to bed a celebrate. LOL