What affects your self esteem the most?

[Kitsune]

The fact that even though I look wel (and feel well most of the time) I am not well and people think I am lazy because sometimes I just don't have the strength to do things I need to do and I'm made to feel guilty for it, when in truth I'd love to be able to just get up and do them.

[MIbarra]

I hear you about the lazy part! I wish I had the energy to do more, but with working and school, there's little time left for cleaning and cooking and laundry and all that. So some weeks it gets undone and pushed to the side. This doesn't make me feel too good about myself and I know hubby thinks I am lazy sometimes when he sees a pile of clothes to be washed and dishes to be cleaned, but heck. Sometimes I just can't get to it! It makes me feel lazy too about myself. But then I think, hey I've seen younger, healthier people do much less in their life. What is their excuse?? (Sorry -- probably ranting about my hurricane roomates. All the energy wasted sitting on their butts doing nothing. It bugs me.)

[paris]

My daughter, Melissa, is wise beyond her years.  She said the other day that it doesn't matter who hurts more, who can do more or less, or your age.  It is your life and you are the one dealing with all the changes.  (She deals with dying people and sees a lot of drama along the way)       Some people may not be effected until middle age, but who knows what else they have lived through---abusive childhood, cancer, loss of a child, loss of spouse - the list could be long.  I think the point is to live today and make the best of it.   Children suffering is the hardest.  God could take me tomorrow, if it would heal the children.    Ok, back to self esteem-----mine is the aging process speading up: skin, hair, everything has aged 10 years in 2 years time.    I have had to redefine who I am and lower my own expectations.   

[paddbear0000]

I was going to add more to what I have already said, but Mibarra already said it. I'd just be repeating what she said almost word for word! A few days, I had the energy to straighten up and even tape up the stairs in preparation for staining them. But yesterday, everything hit the fan. I was shaking so bad and felt like a walking zombie. I was struggling to stay awake all day, even while driving. I went to bed at 8:00 last night!!! That never happens. And today, I still feel the same. This is also affecting my self esteem. I'm walking around, looking like I have a hangover, with big bags under my eyes. I'm  dragging. People look at me and I feel like they wonder why such a young person can't get her act together!

[MIbarra]

People look at me and I feel like they wonder why such a young person can't get her act together!

Amen! You just have to learn to ignore it and know that you are doing the best you can. And if anyone tells you different, tell them  you will gladly exchange your kidney disease with them and see how much they can get done!

[Falkenbach]

I am a transplant patient, but what I hate most:

- Prednisolone making me look fat due largely to fluid retention.
- Sirolimus giving me regular mouth/tongue ulcers
- How tired I get (this has been a problem for years, before and after transplant)
- The weakness in my body generally. I still haven't bounced back to pre-surgery fitness, or even been able to start exercising properly until now. Now, though, things are pretty well as normal as they're going to get and I can start exercising again.

[G-Ma]

I don't know if I said this before or not....depressing day......extended (sisters etc) family members who don't make an effort to visit or call but know exactly how I should/do feel or how and what I should eat, none know anything about this and don't care to learn and ask from time to time why I look so "washed out" etc in pictures.  Think from now on I'll wear a mask or a garbage bag.

[pam49]

What affects my self esteem is the tube in my chest.I have no sex drive.And my skin is sooooo dry it looks like I'm 70 and I'm only 49.Hope my skin gets better after the transplant.My energy level is way down.I have to force myself to do anything.

[Lucinda]

I am manic about my skin and I hate it being dry and I haven't even started dialysis yet.  I have tried all the expensive body lotions etc and I found the best is the very reasonable priced Johnson's Holiday Skin Body Lotion.  It keeps my skin moisturised for up to 24 hours and I don't use if for the colour because I tan in summer but it you are a bit paler it gives a real summer glow and looks extremely natural.  It comes in pale to normal skin and normal to darker skin.  I love it.  If you can't get it over there and you would like some, PM me and I will send you some over.  xx

[Falkenbach]

What affects my self esteem is the tube in my chest.I have no sex drive.And my skin is sooooo dry it looks like I'm 70 and I'm only 49.Hope my skin gets better after the transplant.My energy level is way down.I have to force myself to do anything.

Hi Pam

Skin may still be dry after transplant due to some medications. But don't despair, it does seem to respond fairly well to moisturiser. I have always had dry skin (never had dialysis, btw, just got dry skin!), so this is nothing new for me. I am not quite 34, and I have dreadful skin, but I could tell even when I was much younger that it was always going to be this way. Even before I knew about my kidneys. *sigh*

[Brianna!]

 

My scars effect my self esteam the most, for sure. I've only had two fistula surgeries, well three, if you count the one where they had to move it up to the surface. I have keloids in my body, or whatever, so my scars look horrible. I also have scars on my back and stomach. But those I don't mind, since you can't see them. The one that bothers me the most is the long one that goes from my crease in my elbow to my armpit on my right arm. It's thick, and gross looking and it itches so much. And it hurts. I don't mind my fistula TOO MUCH. But that's because it isn't too big. Yet. I just want my scars to heal, and look all white, or something. I wouldn't care then. They are all pink right now. I just want them to look like the one on my back. That one looks fine. Just really thick, but it blends. I had that surgery when I was like 5?  And it didn't even need to be done.  I am grateful though, that the large scar made it so my fistula will work. 

[karen547]

I would have to agree with Brianna about the scars affecting me the most! I know its superficial and stuff but being 24 you tend to just care about how u look on the outside. I know that when I had my stupid and UNNECESSARY surgery for the PD Catheter, and had it taken out and have a scar on my otherwise nice tummy it makes me mad and upset

[kitkatz]

Not being able to do what I used to be able to do.

[Hanify]

Not being able to do what I used to be able to do.

Same - I'd put up with more tubes and more scars if I thought I could just do stuff like I used to.

[Jean]

Not being able to clean my house as it should be done, not having the energy to " shop" with the girls,and now, my hair looks like dried straw, and I have lost enough weight that I no longer have a butt. Well, I guess some of that could be attributed to my age, but, gee whiz, I didnt expect it!!!!

[kristina]

What shook me and my self-esteem most of all is the fact that in England
the NHS-health-system is allowed to judge as to who is considered to be “worth”
to receive a NHS-health-care-service and who is not worth it.

It came as a total shock to realize
(after my diagnosis of Lupus/SLE in 1995 & MCTD in2003), that:
if a NHS-patient suffers from a rare, chronic, genetically inherited disease,
they are NOT considered as a human being and that is why I am in ESRF
without NHS-medical care & no NHS-GP/doctor/nephrologist to go to.

I have no idea what to do if and when my kidneys stop functioning & no NHS-doctor
has ever explained to me different dialysis treatments, Dialysis-Centres, transplant opportunities etc.

Patients with a rare disease are not considered as human beings, they have no voice in the NHS:
no UK-authority, no EU-authority, no charity and no lawyer assist patients like myself.

This learning process came as a terrible shock to my self-esteem because
I had studied languages, philosophy, literature, art and music without realizing,
that my most basic human rights have not even been covered yet...

[dwcrawford]

This is really a very good question.  It made me think  a bit.  At first thought I'd say it is something physical like the aging process taking its toll but maybe that is a cop out.  Truthfully I think it is that I am sick.  I'm not supposed to get sick.  That's for other people.  Secondly that I've not accomplished much in this life.  To whom much is given much is expected.  It affects my self esteem greatly that I've screwed that up.

[fc2821]

  Coming to terms with the fact that this is not just an injury, something I can "get over" with a little perseverance.  I have always been "the strong one" in my family.  Always took care of everyone else.  Now, I have trouble taking care of myself. 

[willowtreewren]

Making bad choices is my number one self-esteem wrecker! I've made some lu-lu's.

The things I have no control over don't get to me (too much), scars, deafness, physical attributes, but the things I can control and do badly, can send me into a tailspin. I am an over-achiever and I can be very, very hard on myself.

In the dialysis journey, hurting Carl is a real downer. When I look at the real estate of his fistula and choose a spot to stick that I know is going to hard, but go for it because the choices are limited, and then it hurts, or causes a huge scab, or bleeds alot, I feel that it was my responsibilty to do better. If I get an alarm and can't figure out how to fix it and we lose his blood, I feel like I have caused him physical harm. If he is feeling down (doesn't happen too often), and I let it get to me so I'm not helping him feel better, I feel like crap.

But the very worst is when I allow myself to play the self-pity game. I'm not the one on dialysis. I'm not the one stuck in the chair. I'm not the one having the needles stuck in my arm every day. So where do I get off feeling sorry for MYSELF? That's a huge battle. And I'm not proud of myself when I lose it.

There are so many brave people on this site dealing with far worse than I am, and doing so with grace and courage. I so admire you.

Aleta

[kellyt]

I, too, am a transplant patient and what has really hurt my self-esteem is the weight gain since transplant that I can't seem to shake, the abnormally big tummy that I still have since transplant (one year ago), and what the anti-rejection meds have done to my hair.     But otherwise I'm good.   

[tubes]

I've had very low self esteem way before the kidney failure and dialysis. In high school I didn't hide the fact I was on dialysis.  That is how I got the nickname Tubes. Because of the pd cath I had. I've always been open about it. My self esteem hit rock bottom when I started showing the effects of osteoporosis. Some days, I have to talk myself into leaving my apartment. I was 5'8 and now I'm about 5'4. Seeing the deterioration of my body is devastating. Crap, crying again. 

I've only dated a few times because I cant let myself get close to anyone. I've lost most of my friends because I refuse to go out with them. I don't work anymore because I'm scared to be out in public. No self esteem and being extremely self conscious, it's a wonder I even make it to dialysis.

[jbeany]

Post transplant, I think it's the hair that's the biggest issue for me physically.  Heck, if half the hair on my head was going to fall out, why didn't all the grey ones drop off?  I don't care about the scars much.  So the hair on my head stopped growing and fell out, and now there's a covering of blonde fuzzies all over my face.  One of the nurses gave me a magnifying mirror my last couple weeks in the hospital.  Auuuugh!  I'd turned into a sasquatch.  It grows really long, too.  So now I'm shaving every couple of days.

On the bright side, I no longer need to shave my legs every day - that hair stopped growing along with the hair on my head.

[kellyt]

I've had very low self esteem way before the kidney failure and dialysis. In high school I didn't hide the fact I was on dialysis.  That is how I got the nickname Tubes. Because of the pd cath I had. I've always been open about it. My self esteem hit rock bottom when I started showing the effects of osteoporosis. Some days, I have to talk myself into leaving my apartment. I was 5'8 and now I'm about 5'4. Seeing the deterioration of my body is devastating. Crap, crying again. 

I've only dated a few times because I cant let myself get close to anyone. I've lost most of my friends because I refuse to go out with them. I don't work anymore because I'm scared to be out in public. No self esteem and being extremely self conscious, it's a wonder I even make it to dialysis.

Tubes, I would absolutely love to meet you in person because you appear to be just adorable!!!  Hopefully you can make it to the next IHD get together.

[willowtreewren]

Robert,
This made me so sad! It isn't the physical body that makes the person! That's just what we are stuck with. It's the spirit that lives inside the body that is important! That's why I don't give any truck to those things that I can't control. They aren't part of my character. I can control my character. And the physical deterioration isn't something that you have under your control.

I'm not trying to make light of your loss of self-esteem, but hoping that you can catch a glimmer of the reflection of the shining character that I see in your posts. That's the part of you that should matter to you and to everyone else.

Tht is what counts becuase that is who YOU are.

 

Aleta

[cariad]

Robert,
This made me so sad! It isn't the physical body that makes the person! That's just what we are stuck with. It's the spirit that lives inside the body that is important! That's why I don't give any truck to those things that I can't control. They aren't part of my character. I can control my character. And the physical deterioration isn't something that you have under your control.

I'm not trying to make light of your loss of self-esteem, but hoping that you can catch a glimmer of the reflection of the shining character that I see in your posts. That's the part of you that should matter to you and to everyone else.

Tht is what counts becuase that is who YOU are.

 

Aleta

Beautifully put as usual, Aleta. I agree 100%!

Robert, I see a wonderful, friendly, supportive person in your posts. You're a catch, as a friend or as a partner. I hope you can start to believe that about yourself, and let others around you into your life.