Anyone else just freakin' tired all the time?

[Panda_9]

A quote from Stacy_without_the_E " I don't feel sad or happy, joyful or depressed.  I don't feel anything anymore really"
You couldn't be more right!! I thought I was depressed, but now that you say that, I think I just feel...well....nothing.
I don't think it helps being tired all the time either, it makes it a bit hard to have any sort of enthusiasm. I am pretty tired probably 95% of the time.
I am on nocturnal dialysis and I do 4x10 hours a week. I feel at my best the day after my night off. But there are days where I am just so tired, I cant even be bothered to eat. And then there are the days where I end up in bed all day because I just cant move. Thankfully since starting nocturnal this is getting less often). I truly admire people on dialysis who can manage to get themselves to work. Anyway I'm going for a nap now lol Will be back later on, got lots of reading to do on here.

[kitkatz]

I got the job yearly contract the other day. For that kind of money I will get up and go to work tired next year.  I am now earning in the 70s.  A nice little pile of change for all the hard work I do as a teacher.  I am learning how to gauge the tired with the really tired and take care of my self while on the job.  I sit a lot more now than I used to when I am teaching the class.

[Panda_9]

Thats great kitkaz, good luck to you!
I have been doing nothing/not working, since 2002, and its starting to drive me crazy!! It gives you a bit too much time to think. I think I am very unfit too, which I guess would contribute to my tiredness. I want to work, but I just don't feel ready mentally or physically. Some days I do, but most days I don't.

Bear, why cant you get disability? I have been on it for 5 years. My initial application was rejected, but I appealed and got it.

[Bear]

To be  honest Amber, I haven't tried. largely 'cause I'm not hopeful, as my wife's a teacher & earns more than I do!! 
I do get a top-up from my Super fund. They have a scheme for "Total and Temporary Disablement", where, if you have
been off sick to the extent that you have used up all sick, annual leave, etc. they will pay 80% of your wage for up to
2 years (after which, if there's no change in your circumstances, they assume you are "Total and _Permanently_" disabled
and will pay out  your Super in full, once you resign/retire from your employer. IN my case, this means they make up my
pay to 80% and I'm hoping they continue to do so (if Carmel or Caroline keep giving me the paperwork to prove it )
until Dec'07. Then I might be out!! Yay!!   Fingers x'd 
My wife has also dropped a day a week(Mondays), starting last week, to make her life a bit easier. So between us we
have dropped about $22kp.a.....but I don't think I'll need to take up the saxophone & go out with the dog just yet 

[Panda_9]

Oh ok I get ya. You might not get anything anyway. My other half earns an average wage which even that affects how much I get. At the moment I get a bit less than half than when I was getting a full pension. Its rediculous!! They class my partners wage as my own "income". Its not like he hands me his pay cheque every week!

[goofynina]

I got a word ,   

DIALYSHITS

ok, ok, sorry ,  i just wanted to get in on this, lol,  although there are some pretty good ones posted here

[RichnStacy]

kitkatz wrote:

I am tired when I go to bed at night.
I am tired when I get up in the morning.
I am tired before dialysis.
I am tired after dialysis.
I am tired before I eat
I am tired after I eat.
I am tired before I take meds.
I am tired after I take meds.
I am tired when I go to wok.
I am tired at work.
I am tired when I come home after work

You know, maybe it is just me, but I get the impression that you might be TIRED!
All kidding aside, I know where you are coming from.  I feel like I am a walking zombie have the time.  I go to sleep around 9 every night and I am wide awake by 2:30 for some reason.  I can never fall back to sleep.  Of course it is a known fact that ESRD patient suffer from insomnia, although I don't understand why, we do

[Panda_9]

RichnStacy, I hear ya!! I am soooo tired during the day, then if I stay up real late I end up wide awake like I am now. Well, I am actually tired, but I know I wouldn't be able to get to sleep. I'm waiting for my other half to get home, so I'm hoping when he gets home ill get into sleep mode. I get told from various people that if I sleep during the day then of course I'm not going to sleep at night. Its just not the case with me. If I don't put myself in bed of an afternoon, I will fall asleep anyway, unless I'm out shopping or whatever. Some nights ill have no trouble going to sleep after an arvo nap, but other nights its hard.
I have found it helps if I take my gabapentin around lunchtime, as it starts to really kick in by bed time. If I take it in the morning, by late afternoon I'm dopey. If I take it too late in the afternoon/night, I'm up all night. It is a medication for neuro pain, but it definitely helps me sleep. It eases that awful crawly feeling you get in your feet, and the restlessness. I wish I had of been put on it loooong ago.

[RichnStacy]

Amber79 wrote:

RichnStacy, I hear ya!! I am soooo tired during the day, then if I stay up real late I end up wide awake like I am now

Yep, as usual I went to bed a little after 10 last night and I was up and fully awake by 1:00a.m.

I get told from various people that if I sleep during the day then of course I'm not going to sleep at night

I understand the concept, that if you sleep during the day you will not sleep as well at night.  I have been told the same thing as you have.  What people fail to realize though is that if you don't sleep for several nights it is next to impossible to stay awake.  Eventually my primary physician told me to sleep whenever I could, and that is what I do.

I have found it helps if I take my gabapentin around lunchtime, as it starts to really kick in by bed time

Is this a sleeping aid?  Why does it take so long to start working?  Is it a time release type medication?

I wish I had of been put on it loooong ago

Usually I just take something from over the counter to help me sleep because I have found that the prescription type sleeping aids make me sleep, but I have lasting effects all day the next day and I am worse off than if I have had no sleep at all.

[Panda_9]

Richnstacy, its not a sleeping aid, its a medication to help with the neurological pain in my feet. It just happens to also help me sleep as it eases the pain, as well as the crawly icky feeling in my feet, and has settled the restless legs. I guess it sort of helps me to relax a bit.

[RichnStacy]

amber79 wrote:

Richnstacy, its not a sleeping aid, its a medication to help with the neurological pain in my feet. It just happens to also help me sleep as it eases the pain, as well as the crawly icky feeling in my feet, and has settled the restless legs. I guess it sort of helps me to relax a bit.

Well I am glad it helps you relax some but sorry you have to take it in the first place for the neurological problems.  That must suck!  If you don't mind me asking, is the neurological pain in your feet due to your kidney disease or something else?  If this is too personal tell me to shut up and mind my own business

[kitkatz]

I am sooo stressed out right now I think I am too stressed to know if I am tired or not.  I got so tired last night it took me five minutes of sitting the car to finally get it going and drive home from the hospital where hubby is.  Tonight I called a friend and we went to dinner.  I hate to eat alone.  I am tired, tired, tired.  I think I am tired!

Katherine

[Panda_9]

Richnstacy, it is a part of kidney failure, mainly due to being very underdialysed for some time. I was on PD for 18 months, and in that time I wasnt getting the best clearances. It was ok while I had some kidney function left, but as soon as that dropped off my levels kept going up and up. It is called peripheral neuropathy. The nerves in your limbs die off (I think). My toes are completely numb, and it has spread halfway up my calf. It is hard to describe. My feet are numb but painful. I can feel pressure and a bit more in some areas. I get a sort of crawly feeling when they are touched (by anything), which is especially bad in bed with the sheets on them. I have to sleep with my legs hanging out the side of the bed most nights.
Since Ive been taking this drug, it has helped a great deal and I have been able to sleep alot better, and so has my other half 

[RichnStacy]

Amber79 wrote:

Richnstacy, it is a part of kidney failure, mainly due to being very underdialysed for some time. I was on PD for 18 months, and in that time I wasnt getting the best clearances

Amber, thank you for the explanation.  I wasn't sure if it was related to your kidney problems or not. 
You mentioned that your nerves die off because of poor clearance.  Is this something that can improve if you are getting a good clearance or something that is permanent?  Either way I know it must suck big time cause I get the crawly feelings after dialysis where I feel like I want to scream and I am sure it is nothing in comparison to what you have to go through.  I am glad they were able to find something to give you some relief.  God I HATE this disease!!!

Richard

[Panda_9]

I had it when I was younger, although not as bad as I do now. I was on PD for 9 months at the time, and due to poor clearances I was looking at HD. But I was lucky and got a kidney. After I got the transplant, the nerves came back, and my feet were fine. It is supposed to improve over time with the nocturnal. I do get less pain now, but the numbness is still there.

[RichnStacy]

Amber79 wrote:

After I got the transplant, the nerves came back, and my feet were fine. It is supposed to improve over time with the nocturnal. I do get less pain now, but the numbness is still there.

I am glad to hear that you get less pain now, but am sorry you get any at all.  That must be a miserable feeling to have to deal with.  Hopefully over time the nerves will regenerate and quit giving you any problems at all. Keeping my fingers crossed for you 
 
How long did your transplant last?  You are a brave soul.  I am scared to death of all of the complications they tell you about when you are going through your eval. and have decided, at this time, that I don't want one, although I am not sure if I would pass the inspection, so to speak, to even be eligible to receive one with all of my medical problems. I just don't need to add to any of my problems that I already have and some of the things they warned about, like diabetes, is just too much to chance right now.  At least I can still have my sweets

[Panda_9]

I think myself lucky, there are people far worse off than me. I am going for another transplant because I think the risks associated with long term dialysis are more dangerous than those associated with having a transplant. Speak to someone about it and get all the info, then make up your mind. If it is a good transplant, Its worth it. Thats just my opinion, going on my own experience. Whilst I remain on dialysis I dont think I will ever be able to work or have kids, travel etc. Which I really dont want.

[kitkatz]

Well I started this thread, so I better add to it.

Yes, I am still tired if anyone wants to know.  I really would like to sleep for several days and not move.  But school has started and I will just have to get used to being tired and on the run again.
(Complain, complain, complain!)

Katherine

[angieskidney]

Ya I am starting work soon and I will miss sleeping in I am tired all the time but I am no where near how I was when I first lost my transplant in 2001. My hemoglobin was 66 (minimum for women is 120) in Canadian numbers ... the nurse said she was amazed I could function. Well it was hard. I was holding down a 12-hr shift when I could not even bike on my bicycle even one block! Man I was in tears I was so frustrated thinking "wth is wrong with me!?!?" I should have figured it out but I didn't have hemoglobin problems when I first lost my original kidneys .. so how was I to know?

I am still tired all the time but nothing in comparison .. so I will be going back to work .. 5 hrs .. 3 times per week.

[kitkatz]

Good luck Angie with work.  I hope all goes well for you.

[angieskidney]

Good luck Angie with work.  I hope all goes well for you.

Thank you Kitkatz

[Black]

... I am still tired all the time but nothing in comparison .. so I will be going back to work .. 5 hrs .. 3 times per week.

Wonderful!  Hope it goes well and you don't get too tired.

Lorelle

[Bajanne]

I am happy for you.  I join with the others in wishing success.  Pace yourself and remember, we are taking one day at a time.
Blessings!

[angieskidney]

thank you It means a LOT

[kitkatz]

Now remember, Angie, the first few days will be exhausting. You will wonder why the hell are you so tired after only a few hours work and why are you doing this. Just get up and go to work, then go to dialysis.  Relax and enjoy what you are doing.  Remember to rest if you get too tired.  I have to sit down sometimes when I am teaching and teach from a chair.  Remember to eat breakfast so you remain strong for work.  Start slowly and build up to full power after a few weeks.  Enjoy yourself!