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KICKSTART
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« on: May 20, 2007, 06:50:18 AM »

My tiredness has just hit new levels. Most of us are used to dealing with tiredness, but i am finding i now want to sleep most of the day . I am getting up in the morning after a 4 or 5 hour sleep at night and finding i want to go back to bed. If i do, i find i can sleep again for another couple of hours, then get up and feel just as tired.I could easily sleep for most of the day. I know i am overdue some IV iron , but i cant have any because my bp is too high ,so that could be another reason for being tired / no energy levels? Nothing much has changed in any other respect , but i feel like i am sleeping my life away, i feel guilty for going back to bed , although i only have myself to please. Like today , i got up at 6am did some jobs, went back to bed till 1pm , got up and the sun was shining ,it was beautiful , but i have wasted another day .
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OH NO!!! I have Furniture Disease as well ! My chest has dropped into my drawers !
RichardMEL
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« Reply #1 on: May 20, 2007, 06:54:00 AM »

You know today I have been VERY tired... maybe because I have been exercising more than I had in the past all week but I have stayed in bed most of the day just feeling VERY tired (the only bonus is not getting up to drink?!)... luckily I had the football to listen to in the afternoon and my cat snuggling up to keep me a bit sane but I too felt like I have wasted the day doing very little. I did eventually get up and get dressed but I haven't left my place. I hope I feel not so tired tomorrow since I have to be at work! lol.

Maybe you should get your haemoglobin levels checked they might be a bit low? Alas I just had my anaresp shot on Thursday so I can't really use that as an excuse I think.. maybe I just overdid it during the week.
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3/1993: Diagnosed with Kidney Failure (FSGS)
25/7/2006: Started hemo 3x/week 5 hour sessions :(
27/11/2010: Cadaveric kidney transplant from my wonderful donor!!! "Danny" currently settling in and working better every day!!! :)

BE POSITIVE * BE INFORMED * BE PROACTIVE * BE IN CONTROL * LIVE LIFE!
boxman55
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« Reply #2 on: May 20, 2007, 07:03:35 AM »

I am up at 5 every morning during the week because of work I will nap for an hour in my car at lunch and on MWF sleep through half my dialysis time in the evening, but on the weekends I could just go back to bed and sleep all day I have to force myself away from the bedroom. yesterday I went back to bed and woke at 4pm. I hate that but when your tired your tired. I still feel like I wasted the whole day though...Boxman55
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KICKSTART
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« Reply #3 on: May 20, 2007, 08:47:11 AM »

Isnt it awful? We know we should resist , but that bed just calls out , its the whole waste of a day thing i hate. Sun's out, and i am in bed ,another day gone before you know it ! Glad to know its not only me that feels like that !
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OH NO!!! I have Furniture Disease as well ! My chest has dropped into my drawers !
stauffenberg
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« Reply #4 on: May 20, 2007, 08:55:47 AM »

Given the severe anemia of renal patients, they have a good excuse for not being productive.  I found that every point my hemoglobin was below the level of 130, I had to sleep an extra 6 minutes per day, so at a level of 120, which is typical for dialysis patients, I was sleeping at least 9 hours instead of 8 per 24.

To top it off, the neurological damage caused by the inadequate clearance of toxins in dialysis patients makes it difficult for them to get a normal, refreshing night's sleep with adequate amounts of REM sleep, so they wake up tired no matter how long they have stayed in bed.  Only when I finally got a transplant did I realize again how different normal people feel from dialysis patients, since even after four hours of surgery I was more awake, alert, and energetic than I had been during the previoius 8 years of dialysis.
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Chicken Little
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« Reply #5 on: May 20, 2007, 10:18:41 AM »

I sleep 8-10 hours a night (interrupted several times by a thirsty catheter attack) and then take a 2-3 hour nap after lunch.  What?  That's not normal?     ;)
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BigSky
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« Reply #6 on: May 20, 2007, 10:49:13 AM »

IMO you need to start to exercise.   

It takes a while but it will help out greatly.  At first you will be tired but after a while you really do build up your stamina and will not be so tired.

 I will not kid you, its really hard in the beginning to start exercising because it will take it out of you and you will want to give up.  Just dont give up and just keep doing it.  Little by little it will improve. 

Since I have been doing it I am rarely tired anymore.  Even though my hemoglobin dropped down to 10.7-10.9 the past two months and I have far more energy than I used to when it would drop in that range.
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LightLizard
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« Reply #7 on: May 20, 2007, 11:25:12 AM »

Before I was diagnosed I went through a period of illness that kept me bed-ridden -completely- for seven months. The fluid built up and it got to the point where I could barely get from the bed to the bathroom, with all the extra weight I was carrying.
After I was hospitalised a catheter was inserted into my belly to drain the excess fluid in my system. 14 litres were drained, over the course of 3 days, and even though I lost a lot of weight, during that time, because of spending so much time in bed, I had also lost 80 percent of my muscle mass. My hemoglobin levels were dangerously low and my energy level was too, of course.
A physiotheapist was brought in to get me walking again, but I was quite agitated with her and her technique. She wanted to get me on my feet and walking immediately, and I could barely stand up. In fact, I had to use a walker in the beginning because of my weakness and lack of balance.
When she wasn't around, I would practice bits and pieces of a Tai Chi routine. Sometimes, I would do the same movement over and over, down the long hall, past the nurse's station (they thought I was a looney) and back to my room.
Before long, I had gained enough strength and balance back to walk with relative ease, and I was eventually released from the hospital.
So yes, I must agree that exercise is a must -and even more vital- for we who suffer the loss of our kidney's function.
Use it or lose it!

love

~LL~
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KICKSTART
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« Reply #8 on: May 20, 2007, 11:45:11 AM »

Exercise ..hate to say but i was super fit before i got ill, having had horses for over 30yrs. I am very active now in respect of ,i dont sit on my bum all day ! I have four large dogs and a house to run , with no help , if i dont do it , it doesnt get done . So with respect i probably get more exercise than someone who goes to the gym! Its the sudden onset of extreme fatigue that gets to me , not just ..im tired .Up till now i have never wanted to sleep so much.
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OH NO!!! I have Furniture Disease as well ! My chest has dropped into my drawers !
LightLizard
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« Reply #9 on: May 20, 2007, 12:29:57 PM »

Not intending to be contrary, but I don't believe that old 'I don't need to exercise, I work hard all day, and that's enough for me!' The problem with this attitude is that even if one does work all day, they are more than likely using the same groups of muscles for their work and are not getting a complete workout from it at all. In fact, they may be placing undue stress on certain joints and muscles that lead to fatigue and 'repetitive-stress syndrome', unconsciously. That is a key word here, 'consciously.'
When we are engaged in menial tasks, washing the dishes, mowing the lawn, tending the horses or digging a ditch and the like, we are not exercising. True exercise is done with full awareness of each movement and not for anything other than the aim of fitness in mind. Not watching the clock or engaging in mental images of what else we would rather be doing. And certainly not in resentment for the lack of help we are getting. What is in the mind is vital in order for exercise to be a beneficial activity.
Perhaps, because you are physically active already, you might find some relief and enhancement of your energy level by indulging in some quiet meditation, which is really just quieting the mind, allowing thoughts to attend to themselves and relaxing the body for a short period of time.
Visualisation exercises can also work wonders for a tired body, as well, and may be worthy of your attention.

love

~LL~
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KICKSTART
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« Reply #10 on: May 20, 2007, 01:54:25 PM »

LL  meditation is something i have never tried, tbh i am a hundred mile an hour person , when feeling on form! Maybe i need a calming influence? I cant see how i would clear my mind ? it so full of junk , important and non important , some tips ? :2thumbsup;
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OH NO!!! I have Furniture Disease as well ! My chest has dropped into my drawers !
LightLizard
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« Reply #11 on: May 20, 2007, 03:19:42 PM »

I know what you mean, Kickstart! Most of us are like that, our minds full of bits and pieces of everything. It seems that it never stops, this thinking and pondering, remembering, conjecturing, wondering, imagining and constant babbling that goes on inside our heads.

If we took the time to really observe our thoughts consciously, we would notice that we tend to repeat the same ones, over and over and over again, all day (and sometimes all night) long!
I don't really like the term 'meditation' that much. It suggests, in a way, the idea of actually thinking deeply about something. But really, the term 'meditation' is intended to be a process that is as far removed from any kind of thinking as we can make it.

One method that is effective, for some, is the method of 'counting breaths.' One simply relaxes the body, consciously, in a sitting or a laying down pose.(Laying down while doing this can lead to falling asleep, so if your aim is to meditate, it's best done sitting on a chair, not leaning back, feet flat on the floor and hands in your lap.)

Just breathe in (through your nose) and as you breathe out (also through your nose) count (mentally) 'one'. You can stretch it out with the breath, that is, 'onnnnnnnnne...' and so on. Breathe in, and on the out, 'twooooooooo'....

Continue in this fashion until you reach a pre-determined number, and then start back at one.
Usually, it's recommended in the beginning, to count only to five, or even four, before going back to one. You'll notice as you count that thoughts will jump in and distract you from the process. That is to be expected. Thinking, a life long habit, doesn't take to being tamed very well.

If you can perservere, eventually, you will find that you can count up to ten without thoughts intruding in the process. It certainly isn't an easy task, but when you begin to notice the silent moments, the 'spaces between the thoughts'- you will discover an incredible and wonderful aspect of yourself within that can become a really valuable 'refuge' from the madness and chaos of everyday existence.

Also, you can try a visualisation technique, if you are so inclined.( Women find this easier than most men do, by the way.)
Imagine, (with your eyes closed, of course) that you are looking at a calm, placid lake or pond.
The water of the surface of the lake (or pond) is covered in ripples and waves. Slowly, will the ripples and waves to decrease, relax and subside until the lake is like a sheet of clean, clear glass, with the sun reflecting off of it, like a warm, summer's afternoon.

Meditation is a natural, but mostly latent, talent that all humans have. It's just a matter of practice, really, like riding a bicycle or juggling. Watch a cat as she sits there. Not sleeping, not awake. But still and silent, calm and serene, untroubled and at rest. In Peace.
That, is True Meditation.

'Practice, Patience, Perserverance'.

love

~LL~
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kitkatz
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« Reply #12 on: May 20, 2007, 05:19:33 PM »

Let me tell you after a full day of work and then dialysis, the last thing I want to do is exercise!  I agree the weekend are pretty much wasted time because I am trying to catch up with the exhaustion that I have all week. I sleep during dialysis session for an hour to an hour and a half. I used to never sleep during dialysis, but this darn disease is pretty much making me into a zombie!

Just know KICKSTART I absolutely understand where you are coming from!! :bandance; :bandance; This ittle guy can dance and exercise for me!
« Last Edit: May 22, 2007, 05:35:19 PM by kitkatz » Logged



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Danally
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« Reply #13 on: May 20, 2007, 05:40:30 PM »

My dad feels much better every since he started hemo 4-months ago. He has more energy now then he has had in years.
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KICKSTART
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« Reply #14 on: May 21, 2007, 01:08:04 AM »

Interesting LL , i will set some time aside to try. I have got some cd's of 'sounds' rain, thunder,running water etc which i listen to from time to time. I think one of the times i am most relaxed is when sat by running water, but i dont get to do that so often !
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OH NO!!! I have Furniture Disease as well ! My chest has dropped into my drawers !
Sluff
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« Reply #15 on: May 21, 2007, 04:28:21 AM »

Not intending to be contrary, but I don't believe that old 'I don't need to exercise, I work hard all day, and that's enough for me!'


That is a matter of opinion. I do different types of work so for me I don't have a repetitive job. Some days I just sit behind a computer and other days I'm cutting grass, about 7 or 8 yards a week, other days I'm cutting tree's down and cutting firewood and grinding stumps, other days I'm climbing ladders to scrape and paint houses or tear off a roof etc etc..

Don't tell me I'm not getting exercise. Do you think I'm going to get home after a 12 hour day and then go for a walk? And do more exercise?
After getting dinner together, taking my meds, checking my BP and all that, it's bedtime.
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RichardMEL
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« Reply #16 on: May 21, 2007, 07:29:51 AM »

I couldsn't listen to running water etc.. it would make me want to drink a small lake!! lol

I relax by spending time with my cat... she's so sweet and just likes to sit with/on me that just sitting there pating her and napping is very relaxing for me.
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3/1993: Diagnosed with Kidney Failure (FSGS)
25/7/2006: Started hemo 3x/week 5 hour sessions :(
27/11/2010: Cadaveric kidney transplant from my wonderful donor!!! "Danny" currently settling in and working better every day!!! :)

BE POSITIVE * BE INFORMED * BE PROACTIVE * BE IN CONTROL * LIVE LIFE!
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« Reply #17 on: May 21, 2007, 08:15:39 AM »

Petting a cat, or dog, can be very relaxing and is quite rewarding to the blood pressure levels, studies show. In fact, when I was in hospital and my wife and I were in the process of moving, we found a place that didn't allow pets, but we had to take it. We have a cat, so I asked my doctor for advice, and he immediately wrote me a presription for a cat! :lol;
Here in BC, the landlord/tenants act allows for a cat or dog if there is a medical condition that the tenant has can be helped from having a pet.
It's not 'meditation' as much as relaxation, but for some, it's the closest thing they can get to, it seems.

Studies have also shown that physical acivity, no matter how varied and strenusous it is, definitely does NOT have the same beneficial effect as conscious, deliberate exercise. But, if your physical efforts throughout the day use up your energy, you need to balance it out with something less active than 'work' but more active than just sitting or laying down to rest.

To each his own.

love

~LL~
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stauffenberg
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« Reply #18 on: May 21, 2007, 08:31:03 AM »

It always seemed inconsistent to me that if a person of otherwise normal health came into the doctor's office with the hemoglobin level of the average dialysis patient, one of the first things the doctor would do is to forbid the patient to do any exercise, and to insist the patient get plenty of bed rest, until the hemoglobin could be raised to normal by a blood transfusion or increased iron levels.  But somehow dialysis patients with this same low hemoglobin level are expected to exercise "because it is good for them"?! 
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KICKSTART
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« Reply #19 on: May 21, 2007, 09:19:07 AM »

I would also like to add that stroking a pet does nothing for your BP . I have 4 large dogs  who i constantly fuss and my BP is through thr roof ! :-\
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OH NO!!! I have Furniture Disease as well ! My chest has dropped into my drawers !
LightLizard
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« Reply #20 on: May 21, 2007, 09:28:31 AM »

Dogs can be a good deal more 'hyper-active' than cats, and you have a point there KickStart, but petting a cat is different because a cat can be more placid and therefore, relaxing.
The benefit of dogs, other than their companionship and loyalty, is that they force one to get off the couch a few times a day to take them for walks.

'Dogs have owners,
cats have staff....' ;)

stauffenburg, no one has suggested that one with hemoglobin levels in the low range should -or could- take up a course of fitness. but, once hemoglobin levels have been brought to a more reasonable level, it would be wise to enhance the areas of the body that support overall health.

As always, the advice is; 'check with your physician before beginning any kind of fitness progam.'

Common sense may not be so common, but it is necessary for useful communication and fitness, as well.

love

~LL~
« Last Edit: May 21, 2007, 09:33:56 AM by LightLizard » Logged
pierrat
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« Reply #21 on: May 23, 2007, 03:40:18 AM »

I would also like to add that stroking a pet does nothing for your BP . I have 4 large dogs  who i constantly fuss and my BP is through thr roof ! :-\

Well thats the problem 4 large anything can make someones BP go up, now if you had 1 and it wasnt a neurotic laptop, it might do wonders lowering your bp. But no im not advocating culling your herd  ;) Your just going to have to find some other way of lowering that BP. About the iron, my clinic puts iron directly in the hemo machine, if your on hemo is that an option for you?
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Wattle
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« Reply #22 on: May 23, 2007, 04:35:31 AM »

I sleep 8-10 hours a night (interrupted several times by a thirsty catheter attack) and then take a 2-3 hour nap after lunch.  What?  That's not normal?     ;)

Trying to sleep with the cycler EVERY night is like having a new born baby. I go to bed tired and have broken sleep then wake up tired!   :-\

I have two children to get off to school and I work. I don't get the chance to have a nap   :boxing;  I wish I did! Some days I just loose it   :urcrazy;

I really am a little crazy  :lol;
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PKD
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RichardMEL
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« Reply #23 on: May 23, 2007, 08:52:37 AM »

4 active dogs would certainly keep you going unlike one small kitty who doesn't demand much except a warm lap and some food.

We have discussed pet therapy here before.. I am CERTAIN that having my cat (over 3 years now) has helped me out physically as well as emotionally. Yes, the BP is lowered but I am sure she has helped me lower stress and stuff and maybe kept me away from dialysis for a few months which is worth it!!!

As a single guy who lives alone there's also that something wonderful about coming home to someone who is glad to see you. And I know it's not just about food because she gets all excited and happy and rolls around and generally wants my attention :) (and I'm a sucker for a beautiful girl :) ).

This is all way off topic - my apologies...

onto the tiredness thing.. for the past 2 weeks I've done quite a deal more exercise (walking, exercise bike etc) and also spent time in the sauna (a 30-40 minute session sweats out around 0.5kg :) ) and I actually feel less tired (apart from last sunday which perhaps has been a result of all the exercise :) ) but I generally have felt reasonably energetic (as far as you can with ESRF)...
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3/1993: Diagnosed with Kidney Failure (FSGS)
25/7/2006: Started hemo 3x/week 5 hour sessions :(
27/11/2010: Cadaveric kidney transplant from my wonderful donor!!! "Danny" currently settling in and working better every day!!! :)

BE POSITIVE * BE INFORMED * BE PROACTIVE * BE IN CONTROL * LIVE LIFE!
st789
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« Reply #24 on: May 24, 2007, 04:37:31 PM »

Wow,  Wattle you are amazing.  Where is the energy come from.
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