I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: KICKSTART on July 15, 2009, 04:42:02 AM
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I can just feel it coming over me. These past few weeks have been really tough with this total lack of energy. Yesterday i went for IV iron and although i knew it wouldnt have any effect , i was secretly hoping it would give me a bit of a lift, but of course it didnt. I just seem to be going through the motions at the moment , i get up and day after day its the same routine,its driving me mad not having enough energy to get out of the house ( only to the hospital). Im sick of screaming at the doctors that im struggling , i have no energy , i cant even go out , all they do is say ..well its to be expected. Ive gone in a matter of weeks from active/shopping/riding horses , to housebound, weary and very lethargic. I did buy that exercise bike but when it came it needed some assembly and i just havent the energy to do it . Even setting up my cycler at night , you might as well give me sacks of coal to carry instead of fluid , because they feel that heavy to me at the moment. I dont feel im in a rutt because there are lots of things i would love to do , its the energy issue thats causing all my problems right now. Im back to being isolated , not seeing anyone for weeks with not going out and not having any human company ( i have my dog bless 'em!) and i can just feel depression around the corner and anger and frustration at all these wasted days.
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Sorry to read this Kickstart.
You have had so much heartache in the last month or so with stupid punks and feeling so lousy.
How is your hemoglobin? Is an iron shot the same as arspanic or other meds to kick up your hemoglobin. Sounds like you are extremely in an anemia stage.
I pray you can find some energy, if i were close by i would come help you out with stuff.
Were you ever able to meet with your local support group. I recall reading you were looking forward to that but had no energy to make it to the meetings.
Sending you energy waves. I hope you feel them
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Oh gosh I wish I could help, maybe knowing we care helps a bit? I hope so.
Could you print out what you've typed here and show it to your GP - do you have a female GP in the practice? She may just be a bit more sympathetic to pending depression, I know ours is. If the GP says it's only to be expected ask "Why?" , why should you expect it, why should you have to put up with it, why can't they do something to make it more bearable, why have you become so lethargic, why, why, why. I'm sure you have asked all of these but maybe it's time you got more persistent, the squeaking hinge gets most oil, tell them you can't go on like this. Explain that there is a danger that you won't do your dialysis because setting up the cycler is becoming too much - frighten them into finding out why you are so damn tired.
Could anyone from your support group come to visit you for a chat, maybe give you a bit of a lift? I too wish I lived nearer.
And if you've done all that and are just fed up of it all and feel you can't take any more then come and pour it all out here, we'll listen, we care :cuddle;
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Kickstart is what your name means. I get it. :waving; I feel like that all the time, well maybe only when I get out of my treatment. I go in just to get my epohgen at 1500cc of it. my hemoglobin is down to 9 at the most and my energy is like a rollcoaster at times. Sometimes I can go out and do the gardening and other times I'm just so exhasted that I'm need two naps not just one. You need that epo to get you going. I feel like it could be the dialysis center that makes us depress of going with seeing all the older or hopless patients that can't do much. But, that only makes us strong and gives us a kickstart in the ass to make things look up. Hold you gear up and just do little things at once. I try to hold off on things when I'm energyless. :cuddle; Rivy
Si
I can just feel it coming over me. These past few weeks have been really tough with this total lack of energy. Yesterday i went for IV iron and although i knew it wouldnt have any effect , i was secretly hoping it would give me a bit of a lift, but of course it didnt. I just seem to be going through the motions at the moment , i get up and day after day its the same routine,its driving me mad not having enough energy to get out of the house ( only to the hospital). Im sick of screaming at the doctors that im struggling , i have no energy , i cant even go out , all they do is say ..well its to be expected. Ive gone in a matter of weeks from active/shopping/riding horses , to housebound, weary and very lethargic. I did buy that exercise bike but when it came it needed some assembly and i just havent the energy to do it . Even setting up my cycler at night , you might as well give me sacks of coal to carry instead of fluid , because they feel that heavy to me at the moment. I dont feel im in a rutt because there are lots of things i would love to do , its the energy issue thats causing all my problems right now. Im back to being isolated , not seeing anyone for weeks with not going out and not having any human company ( i have my dog bless 'em!) and i can just feel depression around the corner and anger and frustration at all these wasted days.
EDITED: Fixed icon error - Bajanne, Moderator
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I have looked at all of your comments ..all good. For a long time i have been battling with my b.p. its been extremely high , so because of this i couldnt have IV iron or Aranesp (epo). As a result my hemoglobin has dropped to 7.1, this is the doctors explanation of why im so tired. Six weeks ago i went to clinic and told them i was struggling to cope at home with almost everything because i felt so run down and the doctor said because my b.p was now a lot better (new tablets) i could start again with Epo and iron. However i was back in clinic a week ago and said i'd still not had either and it seems i got 'overlooked', great eh! . Anyway yesterday i got my first lot and im due to go now each week for the next couple of weeks. I know i will pick up after i get this , but its such a struggle right now and i think its the fact that i cant go out, more than anything that is getting me down. I know whats causing my depression its this , i have banged on all the doors for help, but i can only have one treatment a week (iron &epo)
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I hope you didnt think I was trying to poke my nose in or be smart, I can see now that you have asked all the questions I was suggesting, I hope you realise I was just worried (which I think you do from you kind 'all good' comment :))
I know what you mean about being overlooked, Dad takes his epo to clinic with him (becasue they don't have room to keep it at the clinic ???) and occasionally he returns with it as the didn't get round to doing it, and of course he forgets about it until Mum unpacks his bag and there it is.
Now you are getting your Epo and iron I hope you will soon start to feel more lively, I'm a bit surprised they haven't given you blood too, maybe just a unit or 2 to get your Hb up a bit, but I suppose they hope the Epo and Iron will do that.
As Susie would have said 'keep on keeping on', we are all wishing you all the best :cuddle;
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Thanks Rose ..no i didnt take it the wrong way , i know you all mean well and sometimes its easy to overlook the most obvious things!
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I remember feeling the same way -- I had to force myself to do anything and taking care of kids and a husband was a nightmare --- I would fall asleep so early -- right after I got home from school - weekends were worse --- I just started getting more energy as dialysis went on thru the years --- sometimes, I revert back to no energy and I hate IV iron and I hate iron shots -- you will get better -- thinking about you
I remember going to sleep at 5:30 pm
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I'm sorry to hear you're feeling so worn out. I hope the epo will start working soon.
I know I have had to learn to tell the difference between being worn out and depressed. It's easy to mistake the two because when you are worn out, it can feel a lot like depression. On the other hand, just dealing with the whole issues of kidney disease can be very overwhelming and depressing. If things don't change by next week, maybe you should talk to your doctors again. Feel better soon.
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:grouphug;
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Wish I had a magic potion to help you. All I can offer it support through this period in your life. One day at a time right now. My thoughts are with you.
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Dude, I wish I could tell you that all of your energy will return but I wouldn't be telling the truth. :puke;
The EPO and iron will help but I have never felt much of a difference. Everyone is different and what causes our kidney failure may play a role in how we feel. Because of the new medicare rules, the hemoglobin levels are never raised above 12.0 at least in our clinic. I believe a normal person's is usually around 14 and higher if my memory serves me correctly. So, we most likely will never reach that same feeling without a transplant. If you are not taking an anti-depression medication, you might want to consider one. I can surely relate to how you feel. I hate it and it makes it worse when I think of how much energy I used to have. Please remember, this is just pretty much how I have felt over the years!
I think you will have better days! Take it a day at a time dude and you'll get through this. :2thumbsup;
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I have looked at all of your comments ..all good. For a long time i have been battling with my b.p. its been extremely high , so because of this i couldnt have IV iron or Aranesp (epo). As a result my hemoglobin has dropped to 7.1, this is the doctors explanation of why im so tired.
Yep, that will do it, all right.
If you can't take Aronesp or iron for high blood pressure, couldn't you get a blood transfusion? In fact, transfusions were how they used to fight anemia in renal patients before Aronesp and Epogen were invented.
When I was first diagnosed with ESRD, my hemoglobin was down to around 7.6. I didn't even have enough energy to get out of bed, no matter how many hours I had slept the night before. My neph didn't want to wait for Aronesp to kick in; he gave me a transfusion--two units of blood. And presto! My hemoglobin rose to nearly 10, and I felt much better.
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:grouphug;
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Hi Kickstart, Im new to the forum but not new to being tired, depressed, angry etc. etc.
Keeping your blood in check is critical and also a good healthy diet is important. I found certain foods made me tired and sluggish so I started keeping track of what foods altered how I felt and changed my diet accordingly.
I agree with what others have said about taking meds for the depression, being tired all the time can be depressing and being depressed can make you feel tired so diagnosing symptoms I will leave to a proffesional.
I pray you find the enegy your seeking
-Mark-
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Wonderfully said Bmevans :clap; I can't reach 14 on my hemoglobin is when they will stop my Epo. I'm at 9 and I drop like a rollercoaster going down. I come up slow and it takes a week to kick in. I do feel ok at times, but I can feel my energy drop when I want to do laps in a pool or work in the garden. I have to take naps to regain my energy plus some good mood Get some rest is all it takes. :2thumbsup;Rivy
Dude, I wish I could tell you that all of your energy will return but I wouldn't be telling the truth. :puke;
The EPO and iron will help but I have never felt much of a difference. Everyone is different and what causes our kidney failure may play a role in how we feel. Because of the new medicare rules, the hemoglobin levels are never raised above 12.0 at least in our clinic. I believe a normal person's is usually around 14 and higher if my memory serves me correctly. So, we most likely will never reach that same feeling without a transplant. If you are not taking an anti-depression medication, you might want to consider one. I can surely relate to how you feel. I hate it and it makes it worse when I think of how much energy I used to have. Please remember, this is just pretty much how I have felt over the years!
I think you will have better days! Take it a day at a time dude and you'll get through this. :2thumbsup;
EDITED: Fixed icon error - Bajanne, Moderator
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Got labs yesterday. What is desired for hemoglobin... it says on this sheet 11 or above but mine if 14.1. Is that too high? It just says good.
I've had a lont time battle with depression and I find my self drawn to the topic, but I find I that the more positive attitude I pretend to have the more positive I become. Mostly I try to read informative post, funny ones or the very positive. Maybe it helps?
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Kickstart, Dan's post reminds me of something really important. The brain can be fooled by our bodies. If you make it a habit to smile even if you don't feel like it, that physical manifestation of happiness will start to change the chemicals in the brain.
Lots of studies ahve been done on this. I teach my kids about this too.
Recent study was on the different brain chemicals that developed based on holding a pencil in one's teeth (smile muscles) vs. holding it in one's lips (frown muscles).
It is worth a try. :2thumbsup;
Aleta
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I've read everyones posts and all are full of useful advice. Im not new to dialysis and have been here before , just never as lacking in energy as this. I really have 3 main issues to address and i know all will take time. I have my hemoglobin, my high phos and also at this time i changed to the cycler. Its difficult to pinpoint which is causing the most problems right now. All treatments will take weeks before i see any improvement i know, so im going to stick with the cycler for a bit longer , then if my levels improve and i dont , i will know the cyclers not for me. The depression part is not really so much from dialysis , more the confinement of not being able to get out and about , again due to total lack of energy and not lack of motivation. I have made several attempts to leave the house and maybe just have a 5 minute walk but i shake with weakness so much and sweat and feel faint that i have to turn back before i have even got 3 yards or so. My legs go to jelly, this is where my depression is coming in ..just the isolation again !
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Kickstart don't be isolated, please come here often and 'talk' to us. We are all here for you and we all wish we could do more to help. You will get over this, you know that - but it will take time, you know that too. We are trying to walk alongside you. :cuddle;
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Is is really frustrating when you have multiple things that could be causing a problem. I'm like you in that I can't do much before I'm exhausted, so I have to be really careful too. I can't go for a walk - but I do have a car so I can get out when I need to. Is there something on line that you could get into - like genealogy or something. Something that's not connected to kidneys!
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Hi Kickstart - I was just checking in this morning and saw your post. I'm very sorry to hear about your energy drain - and I've been where you are - it is very hard to keep putting that one foot forward but I remember you have been "here" before and you found the strength to pull out of it. I know you will again. As a previous poster mentioned you should stop by IHD frequently for a daily dose of caring and :grouphug;. Take good care now Kick and I know you will keep working on your present challenges and get them solved.
Big :grouphug;
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:grouphug; This all stinks. I wouldn't wish this disease on anyone.
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:grouphug;
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Kickstart I hope you are as OK as you can be today.:grouphug; for you and :grouphug; for all our family here.
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Hi Kickstart - how is your day going today? Just wanted to let you know I was thinking of you!!!
:bunny: