Does anyone else find they are sick to death of their body not keeping up with their mind?! My renal faliure has came on very quickly - I was diagnosed four months ago and now I'm on APD. Before I fell ill I was doing my teacher training but had to go on leave in Novemeber. It's now March and I'm just starting to look for part-time work. It's so frustrating because I would love to have something to really get my mind focused on but my body just wont keep up! It's too tired and too cold! (Damn aneamia!)
Are other people experiencing the same thing?
Thanks
Vikki
Frustrated!
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Frustrated!
Even with your eyes closed, may you see the light at the end of the tunnel
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JMan
- Posts: 3473
- Joined: Fri Apr 23, 2004 10:21 am
- Location: Lives in a slightly weird bit of Shropshire called Telford!
At times yes. The mind is willing but the body not..
However Anemia shouldn't be the problem it used to be.
If your hb is below 10 & your a kidney patient it should be activley managed.
http://www.kidneypatientguide.org.uk/ne ... =2645#2645 might be useful if your anemia isn't being managed..
I recently had a blip where mine has dropped to 9. Luckily we have an excellentish Anemia team (one of the bits of the team that IS!
) but it seems to be resolving somewhat now. At least by the way I feel..
On a good day I feel like I can do any job in the world.. On a bad day I have trouble just 'getting started' with getting up in the morning. Its not conducive to regular work.
HTH
However Anemia shouldn't be the problem it used to be.
If your hb is below 10 & your a kidney patient it should be activley managed.
http://www.kidneypatientguide.org.uk/ne ... =2645#2645 might be useful if your anemia isn't being managed..
I recently had a blip where mine has dropped to 9. Luckily we have an excellentish Anemia team (one of the bits of the team that IS!
) but it seems to be resolving somewhat now. At least by the way I feel..On a good day I feel like I can do any job in the world.. On a bad day I have trouble just 'getting started' with getting up in the morning. Its not conducive to regular work.
HTH
"Dialysis! What is this? The dark ages!"
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L. 'Bones' McCoy, ST"
Read my blog:)
Live to Fly
http://www.flickr.com/cybercast
Hi Vikki,
I can sympathise with you. I'm hoping to finish my degree this year after 5 years instead of 3.
I'm also often cold, even though my Hb is usually above 12. It just seems to be the way it is.
As Jman said, is your anaemia being managed ? You should be on EPO if you need it and possibly iron (although I don't seem to need the iron on PD).
Are you hoping to go back to the Teachers Training ? Can you do it on a part time basis or can they give you some other consideration ?
Best Wishes,
Hal.
I can sympathise with you. I'm hoping to finish my degree this year after 5 years instead of 3.
I'm also often cold, even though my Hb is usually above 12. It just seems to be the way it is.
As Jman said, is your anaemia being managed ? You should be on EPO if you need it and possibly iron (although I don't seem to need the iron on PD).
Are you hoping to go back to the Teachers Training ? Can you do it on a part time basis or can they give you some other consideration ?
Best Wishes,
Hal.
Hi Vicki,
I know how you feel, I used to feel freezing all the time even though my Hb wasn't that bad and spent most of last summer sitting by a fire or when in my car having the heating on full all the time!
I'm better now I'm on APD but I generally feel pretty crap first thing, feel a bit better by 10ish after being at work for a while. I do find it hard to concentrate all day and I'm pretty tired by the time I get home.
I hope you feel better soon
mike
I know how you feel, I used to feel freezing all the time even though my Hb wasn't that bad and spent most of last summer sitting by a fire or when in my car having the heating on full all the time!
I'm better now I'm on APD but I generally feel pretty crap first thing, feel a bit better by 10ish after being at work for a while. I do find it hard to concentrate all day and I'm pretty tired by the time I get home.
I hope you feel better soon
mike
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amanda in CA
- Posts: 1806
- Joined: Fri Apr 23, 2004 5:14 pm
- Location: Georgia, USA
I empathise
I understand this feeling well. Every day I get up with big ideas about what I am going to do. Don't feel too energetic or good, usually first thing in the day so by the time I get going half the day has gone. Then my son comes home from preschool about 3.30 and I find that I have only achieved a fraction of what I intended. Not sure about others, but my energy spurt (if I have one) happens later in the day. I know that I find it pretty frustrating. Amanda
It is quite hard to know what to say on this topic. I finished my teacher training in the summer, having at that point been on APD for three years. It was very draining at times. I think a class of thirty must be challenging with two fully functioning kidneys - never mind two dodgy ones! However, i'd say don't give up in the least. Are you going to go back to the training at some point? The key has got to be to pace yourself - and don't beat yourself up if you do have "off" days. Hope everything works out for you Vicky, and you find a part time job that suits you at this moment in time.
Vikki ...
I'm a bloke ... I NEVER expect too much of my mind ... it would only lead to disappointment otherwise ...
though so saying ... I clearly stumbled blindly through my ESRF ... I never realised that my coldness was related to my illness ... this board is an unending source of wonderment to me!!!
I just thought it was because I am skinny ... er ... I mean of lithe build!!
I used to suffer what I now realise were bad phosphate attacks where I couldn’t see anything but orange, red and white spots before me ... any hearing I had was like listening through two eight foot long cardboard tubes attached to my ears ... and feel hot and cold all over ... coming the closest to fainting I think I ever have ... (may I suggest that unlike me ... when driving you should pull over to the kerb and wait for these sensations to diminish somewhat!!) ...
things like walking up 9 flights of stairs to get to my office were a challenge I finally and loathsomely gave up on and took the lift ...
there were moments where I would have complete loss of memory as to what I was doing ...
the nights laying awake because the itching wouldn’t go away ...
the terrible mood swings ... (although the wife could possibly say I had those already!!!!)
the Haemo days where in the beginning I floated out of work and into town to the dialysis unit ... high on Diazepam ... because I am so damned petrified of needles ...
and so many many more things that I have put behind me for now ...
the one thing I do know ... that despite all bravado ... and humour that I like to hide behind ... I wouldn’t have made it though it all if it weren’t for a special person close to me ... and all the friends past and present here on this board ...
all I can say is ...
Keep Going Vikki ...
you will get through it ... no matter how hard you find it now and times to come ...
its a shame that more people who have had their transplants dont stay on here a while after ... to lift others who cant see beyond the stage they are at now ...
things do get better ... honest ...
well apart from my attempts at humour ... that ALWAYS remains terrible
I'm a bloke ... I NEVER expect too much of my mind ... it would only lead to disappointment otherwise ...
though so saying ... I clearly stumbled blindly through my ESRF ... I never realised that my coldness was related to my illness ... this board is an unending source of wonderment to me!!!
I just thought it was because I am skinny ... er ... I mean of lithe build!!
I used to suffer what I now realise were bad phosphate attacks where I couldn’t see anything but orange, red and white spots before me ... any hearing I had was like listening through two eight foot long cardboard tubes attached to my ears ... and feel hot and cold all over ... coming the closest to fainting I think I ever have ... (may I suggest that unlike me ... when driving you should pull over to the kerb and wait for these sensations to diminish somewhat!!) ...
things like walking up 9 flights of stairs to get to my office were a challenge I finally and loathsomely gave up on and took the lift ...
there were moments where I would have complete loss of memory as to what I was doing ...
the nights laying awake because the itching wouldn’t go away ...
the terrible mood swings ... (although the wife could possibly say I had those already!!!!)
the Haemo days where in the beginning I floated out of work and into town to the dialysis unit ... high on Diazepam ... because I am so damned petrified of needles ...
and so many many more things that I have put behind me for now ...
the one thing I do know ... that despite all bravado ... and humour that I like to hide behind ... I wouldn’t have made it though it all if it weren’t for a special person close to me ... and all the friends past and present here on this board ...
all I can say is ...
Keep Going Vikki ...
you will get through it ... no matter how hard you find it now and times to come ...
its a shame that more people who have had their transplants dont stay on here a while after ... to lift others who cant see beyond the stage they are at now ...
things do get better ... honest ...
well apart from my attempts at humour ... that ALWAYS remains terrible
For Vicki; and Rik
Hi Vicki
Just to let you know I have been there. I, too, had awful anaemia and no matter what I wore (whether the heating was on full blast or not) I was always freezing. Dialysis was no help for this with me - it was still cold. I would get up and go to work (for 7.30am) and by 8am it would feel like I hadn't had any sleep the night previously, despite having had 10 hours. I am not ashamed to admit that I needed to go to bed by 9 or the following day would have been on the sick.
The most frustrating thing about anaemia, dialysis and general ESRF was making your daily schedule and being able to complete only one or two simple tasks from about ten. The rest of the time I was sooooo tired, I just had to sit and take it easy.
Just hang in there Vicki; learning to live with something like this is not easy.
Ruth
Hi Rik
I just wanted to say that your posting made so much sense to me. I thought my 'episodes' whilst I was driving were just me. There have been times where I have had to pull over on to the hard-shoulder on the motorway for fear of crashing or fainting if I continued. It felt like I was falling forward onto the steering wheel, and was quite frightening at times.
I could no longer tackle the stairs at work (even though the longest flight is only 14 steps up); this would leave me completely breathless. Having awful night's sleep just because the remainder of my native kidneys refused to shut down for the night. The loss of memory.......can't remember what I was going to say there.......
Thanks for your posting. I'm sorry you went through this too, but it is a comfort to know you are not the only one.
Cheers
Ruth
Just to let you know I have been there. I, too, had awful anaemia and no matter what I wore (whether the heating was on full blast or not) I was always freezing. Dialysis was no help for this with me - it was still cold. I would get up and go to work (for 7.30am) and by 8am it would feel like I hadn't had any sleep the night previously, despite having had 10 hours. I am not ashamed to admit that I needed to go to bed by 9 or the following day would have been on the sick.
The most frustrating thing about anaemia, dialysis and general ESRF was making your daily schedule and being able to complete only one or two simple tasks from about ten. The rest of the time I was sooooo tired, I just had to sit and take it easy.
Just hang in there Vicki; learning to live with something like this is not easy.
Ruth
Hi Rik
I just wanted to say that your posting made so much sense to me. I thought my 'episodes' whilst I was driving were just me. There have been times where I have had to pull over on to the hard-shoulder on the motorway for fear of crashing or fainting if I continued. It felt like I was falling forward onto the steering wheel, and was quite frightening at times.
I could no longer tackle the stairs at work (even though the longest flight is only 14 steps up); this would leave me completely breathless. Having awful night's sleep just because the remainder of my native kidneys refused to shut down for the night. The loss of memory.......can't remember what I was going to say there.......
Thanks for your posting. I'm sorry you went through this too, but it is a comfort to know you are not the only one.
Cheers
Ruth
Andy writes: "the one thing I do know ... that despite all bravado ... and humour that I like to hide behind ... I wouldn’t have made it though it all if it weren’t for a special person close to me ... and all the friends past and present here on this board ... "
I have no doubt that your wife is a great source of strength and comfort to you and that you are fortunate to be able to rely on her so completely. But it is a mistake to think that without such support one cannot get through the trials and tribulations of life. As a life-long batchelor and now nearly an octogenarian I have had to face these problems alone, without a wife, a companion or even a god for solace, and I have managed fine and wouldn't have it any other way. Don't ever underestimate the power we humans have to cope with life's problems. We are the masters of our fate.
I have no doubt that your wife is a great source of strength and comfort to you and that you are fortunate to be able to rely on her so completely. But it is a mistake to think that without such support one cannot get through the trials and tribulations of life. As a life-long batchelor and now nearly an octogenarian I have had to face these problems alone, without a wife, a companion or even a god for solace, and I have managed fine and wouldn't have it any other way. Don't ever underestimate the power we humans have to cope with life's problems. We are the masters of our fate.
I've always had the belief that I never get anything thrown at me that I cannot deal with. Of course there are times when I deal with things appallingly!
I heard a saying the other day that 'you can always overcome lifes hurdles - of course you might smash into some before going over but its the getting past them that matters!'.
I too suffer from extreme frustration on my 'wading through treacle' days - but good days often follow and you never know what is around the corner.
Nicky
I heard a saying the other day that 'you can always overcome lifes hurdles - of course you might smash into some before going over but its the getting past them that matters!'.
I too suffer from extreme frustration on my 'wading through treacle' days - but good days often follow and you never know what is around the corner.
Nicky
Re:Frustrated
I've always had the belief that I never get anything thrown at me that I cannot deal with. Of course there are times when I deal with things appallingly!
I heard a saying the other day that 'you can always overcome lifes hurdles - of course you might smash into some before going over but its the getting past them that matters!'.
I too suffer from extreme frustration on my 'wading through treacle' days - but good days often follow and you never know what is around the corner.
Nicky you couldn't be more right that sums up exactly what I feel alot of the time and 'wading through treacle' is such an apt and brilliant way of putting it and I also deal with things but now how I should most of the time.
I heard a saying the other day that 'you can always overcome lifes hurdles - of course you might smash into some before going over but its the getting past them that matters!'.
I too suffer from extreme frustration on my 'wading through treacle' days - but good days often follow and you never know what is around the corner.
Nicky you couldn't be more right that sums up exactly what I feel alot of the time and 'wading through treacle' is such an apt and brilliant way of putting it and I also deal with things but now how I should most of the time.
I'm in a little bit different situation from you. I got in 30+ years of teaching before diabetes and renal failure forced me into retirement. For a while I was in really bad emotional shape as I could barely see (diabetic retinopathy) and was forced to stop reading and using the computer--my two favorite hobbies. After a year my eyesight improved a little, to the point where they could fit me with strong eyeglasses and I could get back to limited reading and computing. The anemia used to drive me crazy, but epogen and IV iron solved that over the course of a sevweral months, but I do feel the cold more than I used to (New York gets pretty cold in winter--into the teens or lower Fahrenheit). I still miss teaching, but che sera, sera. I try to take life as it comes and do the best with what I have left. Stay strong, talk with your unit about the anemia--they can solve that. Make the most of your abilities--not your disabilities--and keep looking on the bright side. ~Bruce
Thanks
Thanks everyone, your support means a lot to me, it's really hard to feel normal sometimes! 'Wading through treacle' is a fantastic way of putting it - it's exactly like that! My HB is about 8, but the other week it was down to 7.2 again despite the EPO injections and Iron tablets! GRR!
Hope life is goodto you all, you deserve it,
Vikki
Hope life is goodto you all, you deserve it,
Vikki
Even with your eyes closed, may you see the light at the end of the tunnel