fed up with dialysis

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tommc
Posts: 665
Joined: Fri Dec 02, 2005 2:59 pm
Location: Wishaw, Scotland

fed up with dialysis

Post by tommc »

This is probably gonna be a rant. IM sick feed up of dialysis , pills and the hospital. And everytime some politician mentions donation and transplants its a thousand questions Im sick to death of smiling and being nice about if you want to join the list do it if you dont, dont spend 10 mins telling me why i dont care if you do or dont. Sometimes just want to shout at folk who look at you and say your doing great . How f*** would they know. Sometimes i just want to dump it all get in the car and drive away and see what happens.
Transplanted 31/05/09


http://www.uktransplant.org.uk
Cheryl in CT
Posts: 412
Joined: Wed Apr 21, 2004 10:17 pm
Location: Connecticut, USA

Post by Cheryl in CT »

Dear Tom,

Rant away... If you can't do it here, what good are we, right? I'm so sorry you're feeling so frustrated and down right now. I've been there myself, many times, and I think if most of us were completely honest about it, we'd probably all admit that we've had those feelings sometimes. Just know that you have friends here, and I know that we wish you well.

May better days come your way very, very soon. I will be thinking about you.

Take care of yourself, okay?
Cheryl
nellylela
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Post by nellylela »

tom, sorry to hear you're feeling like that... not going to try saying anything except that hope it does get better for you soon and that both of us get our transplants soon - i do know how you feel!!!! big HUGS
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"Those who bring sunshine to the lives of others cannot keep it from themselves." James M. Barrie
xXx Holz xXx
Posts: 556
Joined: Sat Jan 22, 2005 6:29 pm
Location: Warrington, Cheshire, UK
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Post by xXx Holz xXx »

know exactly how you feel, not got anythin helpful to say really! things will get better!

keep your chin up,
and u know where i am if u need to chat

take care

love and big hugs x x x
Fred Caldwell
Posts: 91
Joined: Sun Feb 05, 2006 9:50 am
Location: Lincolnshire.

Fed up Tommc

Post by Fred Caldwell »

Never mind mate. Try this:
Three nuns die and go to heaven.
At the pearly gates they are met by St Peter.
He says "Sisters, you have all led such exemplary lives that the Lord is granting you 6 months to go back to earth and be anyone you wish"
The first nun says"I wish to be 'Sophia Loren' and 'Poof' she's gone.
The second nun says "I wish to be 'Madonna' and 'Poof' she's gone
The third nun says"I wish to be 'Sara Pipellini'
St Peter looks at her and says "who"
Sara Pipellini replies the nun.
St Peter Says "I'm sorry but that name does not ring a bell"
The nun takes a newspaper out of her habit and hands it to St Peter.
St Peter reads and starts laughing, he hands it back and says" No sister,
It says that the Sahara Pipeline was laid by 1,400 men in 6 months"
jenjen
Posts: 1535
Joined: Thu Jul 28, 2005 12:28 pm
Location: Leicester

Post by jenjen »

hi tomm

sorry you're feeling like this-- I too know exactly how you feel.
I go through phases-- mostly I'm ok and functioning normally, but sometimes I start freaking out. The only thing I can do on those days is crawl under the duvet with Radio 4, a cup of tea and a packet of biscuits until it passes.

If you're feeling frustrated, is there anything proactive you can do? I've been helping out LLTGL with promoting organ donation, which is helping me to feel like I'm doing something positive to change my situation- my philosophy is that even if I get one more person to sign up, it might be the person that donates me my kidney, or someone else their lungs etc..

How about live donation? Have you asked anyone?

Waiting for a transplant is hard as its completely out of your hands- thats why I've been a. signing more people up and b. looking into live donation as there the only things I can actually do to change my situation

(((hugs)))
tommc
Posts: 665
Joined: Fri Dec 02, 2005 2:59 pm
Location: Wishaw, Scotland

Post by tommc »

Thanks All

I know it will pass normally im fine things have just been bugging me lately. Jen you just described what i spent the day doing only substitue radio 4 for footie on tv.

My mum offered to donate but was found to have high BP my sister i wont accept one from as she is younger than me and about to get married. She not had children and i wouldnt want ot think that if in the future she did and one of them needed a transplant that she wouldnt be able to donate.

I try and sign up as many people as i can usually through my work. I kremind people of the register online and have just got a new crowd of staff around 2500 becuase my work just went througha merger to become University of the west of scotland. So there all about to get the message too.
If LLTGL are doing anything i can help wih let me know.

Tom
Transplanted 31/05/09


http://www.uktransplant.org.uk
JMan
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Joined: Fri Apr 23, 2004 10:21 am
Location: A small vyllage in Ye Olde London Town, An IÆ’land, Planet Earth, The Universe

Post by JMan »

I can totally emphathise with you on this one. The media's transplant is a wonder solution really pisses me off.. YES I think a successful tx is a wonderful thing. THIS does NOT MEAN that dialysis should not be tailored to suit the needs of patients on haemo. That means good facilites and ACESS to them.. I know for fact this isn't happening. If units end up looking like cattle farms, patients being brought in, put on, 4 hours maybe more then taken off & some moved by hosp transport for sometimes several more hours! I personally don't find that very humanitarian. Food & facitilies meet the minumum requirements & nothing else. There's something wrong there.

Haha I've joined a rant:)!! :twisted: :evil:
"Dialysis! What is this? The dark ages!"
L. 'Bones' McCoy, ST"
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xotrueeloveeox
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Post by xotrueeloveeox »

You know what makes me really mad too? When you miss school, or cant hang out with any of your friends, because some days you just feel so sick and can't get out of bed, your freinds are like, "well what the hell, your not that sick" and its like, do you know how I feel right now? .. Im sure not a lot of you have this problem lol but it just seems like kids, teenagers, young adults, dont have the maturity level to understand that when your organs start to fail, you feel, just plain out icky. Or when your retaining a lot of water, and your eyes blow up and you look like a frog, I personally dont want to go out into public and get stares from everyone...but some people just don't understand.
amanda in CA
Posts: 1806
Joined: Fri Apr 23, 2004 5:14 pm
Location: Georgia, USA

Post by amanda in CA »

I too can empathise. On the days when I am feeling good (by my standards) I can feel so positive. When things aren't going right, it is so difficult to be positive and on those days I wonder if it is all worth it too. When I am acting like a b**** to everyone around me because I don't feel good, I think that they would be better off without me too. I wonder Tommc if your dialysis adequecy is ok or if there are other things e.g haemglobin that needs to be adjusted to make you feel better.

To xotrueeloveox: People just don't get it do they? Last week I found out that the place where I had booked my son's birthday party had lost the booking. The girl I talked to was pretty offhand (probably because I was to her, for good reason). She obviously had a cold. The next day I spoke to someone who justified her attitude etc. because of the fact that she had a cold. I was sorely tempted to tell them that I have kidney failure and a heart condition to justify my attitude. It's funny itsn't it how you are supposed to make allowances for someone when they have a cold or otherwise commonplace problem, yet if we tried to make excuses for not acting great because of our issues, we would just get a blank reaction.
alishe
Posts: 166
Joined: Wed Apr 11, 2007 8:01 pm
Location: Manchester

Post by alishe »

Hi

just reading your post, I know what your feeling just lately I feel like not going to dialysis, but next time I'm still there. Things go down hill alot not just dialysis thats gets you down. But you have to carry on, I've just put the donor web site on my works MSN and tomorrow I'll put it on the end of my email signature at work, don't see what harm it can do.

I hope you feel better.
lol
Sheila
MandyV
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Location: Fulham

Post by MandyV »

Despite being 5 months post tx I can still remember just how hard everything felt at times - perhaps even more so now I know what feeling 'normal' is like. I know that one of my techniques was to pretend that everything was just fine when it obviously wasn't.

It was brought home to me how successfully I had done this (probably to my detriment) when one of my team was doing their annual review with me, and, as he has recently been diagnosed as T2 diabetic (and had probably been so for months if not longer) and he said that he would like that taken into account for his performance rating. Initially I said that whilst I sympathised that was never considered in my reviews (and I did fine in them anyway), but in the management calibration meeting I found myself mentioning it and suddenly everyone was sympathetic and he got the benefit of the doubt on his rating.

So it is a real dilemma, acknowledge that things are not as rosy as they appear or get on with it stoically - well I think that for my own mental health I made the right choice, but would I have done better if I had 'fessed up - I don't know but maybe it would have made my life easier!

One of the things almost everyone has said to me is 'gosh you are so much more bubbly and full of energy' (well yes, not suprising really) and therefore they obviously just accepted that, because I did nothing to disabuse them, the 'dialysis me' was just like that, not because of my health!!

As to the quality of life for dialysis patients Jim, I could not agree more which is why I am still actively involved in our PD Patient Staff Forum - for many people transplant is either not an option, or there is likely to be a significant waiting time and in any case treating patients with empathy and dignity should be a given (a subject which I could rant about in so many areas!).
Thumps
Posts: 1225
Joined: Thu Sep 14, 2006 3:50 pm
Location: London, England

Post by Thumps »

MandyV wrote:Despite being 5 months post tx I can still remember just how hard everything felt at times - perhaps even more so now I know what feeling 'normal' is like. I know that one of my techniques was to pretend that everything was just fine when it obviously wasn't.

[...]

So it is a real dilemma, acknowledge that things are not as rosy as they appear or get on with it stoically - well I think that for my own mental health I made the right choice, but would I have done better if I had 'fessed up - I don't know but maybe it would have made my life easier!
Thank you for saying this. I've been wrestling with my own feelings on the whole situation recently. I'm at a eGFR of 17 and stable, so not quite ill enough to really "feel" it or need dialysis just yet, but still enough that it's certainly affecting my energy and so on. I don't feel *ill*, just knackered all the time.

Mostly though, I feel fine, and I don't make any allowances for myself, then get irritated when I can't keep up with my own goals. I just forget that I'm tired cos I'm not well. Doesn't help that through various complications I've lost a load of weight just recently and people keep telling me I look fantastic :lol: :roll:
xotrueeloveeox
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Post by xotrueeloveeox »

And you know, we all know that there are other people out there, who have worse things then we do, and when people say "at least you dont have this, or that" its like yes, BUT i do have this, and it sucks. Naturally I'm happy I dont have cancer, or something very bad like that, but I still feel sick, and it still puts me down..And the gaining and losing weight within 3 days, really bothers me, because people dont know how to not stare, and talk. It hurts.
Angel
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Location: Sunny Somerset

Post by Angel »

Completely with you on this. In fact I haven't visited for the last few days as felt very low. It isn't always the dialysis itself that is the problem but the physical and mental side effects of the illness and having to deal with the NHS red tape and sometimes incompetence.

I am very lucky as I am in a really accommodating unit with some fabulous people on my shift and I know it could be so much worse. But I have also been there Tom when I was ready to just leave it all behind-my bag was being packed as I just couldn't take anymore.

I also agree with xotrueeloveox that sometimes the people around you also don't help. More than once I have been in tears because I pushed myself to do something because a friend wanted to and felt ghastly for it when I got home and hate feeling like it.

I could go on but I won't but please know we all do feel the same and if other patients don't understand who will. Rant on!! :)
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