Does Anyone Find it Hard to Cope and Stay Motivated?

[caz26]

Hello
I just need to rant and say how good it is to see someone else (adult) who is fed up with eczema.
53 had it all my life and been to so many specialists along with avoiding all the foods, things I'm supposed to and this relapse is really getting me down
What's the point of all the lotions ointments the special laundry balls that don't get my clothes clean , the filtered water ($ expensive ) take my own water everywhere
The emotional cost is great. Feel so repulsed by the dead skin the falling flakes the cracked ears the blood stained pillowcases.
Supposed to be doing the vacuuming but stopped to touch base as I feel insane with the whole frustration of it all
A good movie or dancing to music I love is the only distraction from the dis - ease.
Is there some gene or deficiency in us eczema sufferers ?
I get the eczema newsletter and my heart just breaks for the children who have to go through this and the parents who much watch us scratch ourselves to pieces
Fed up with the expense of all the things to take eat do
As soon as I clean up one area from skin fall out it happens again
going to put camommile in my hair for my irksome scalp

[Jaydean]

Hi Guys,

Few very good comments here. I have suffered for years with eczema, and I also dont know what my triggers are? They say stress doesnt help, but how many people do you know with a non-stressful job? Sometimes my skin can flare up when Im the happiest person in the world, and other times its good when im really depressed about something else - weird huh? Ive had patch and blood tests done, but ocn eyou get results, its so hard to filter bad foods.

Ive had enough of the disease, but understand that after 30 years it isnt going anywhere. Ive learnt to deal with public opinion, in my teens I would react violently. Then I started talking when people asked, but one thing I cannot deal with, and will never be able to, is the stare/look. You know the one Im talking about, the one that holds a thousand words even though nothing is said. But, as people tell me, sometimes its a look of sympathy, other times its a look of acknowledgement (maybe they know someone with the condition). Unless someone says something to you int e street, its impossible to know what theyre thinking. For instance, Ive been stared at by women, felt annoyed, but ended up going on dates, dont think for one second that because you have eczema you are not attractive - we are unique.

Its weird, my mum went thought everything with me, chinese herbal medicine, great ormond street, accupuncture. I now have a little girl of my own, who touch wood, has no sign at the moment. And it makes me grateful for my mother, cause I dont think I could do for my little one, what she did for me.

[AnnaB]

Hi
Trust me as a parent you do everything you can if needed, but hey just celebrate your little girl does not have it. Both my small children do yet I don't so I can only imagine what they suffer. I often cry as I feel helpless to understand. Peer support is good though. My children were able to send a photo via mobile phone to a class mate who was having to wear wet wraps for the 1st time. It was great that they felt able to support each other and still do. No one else wears special suits under their uniform so they truely support each other. Finding support and feeling your not alone is a great help, I know that just from witnessing the children and meeting fellow parents.

[JohnS]

Hello all!

I'm new to the site and like many of you here felt to the need to register just to have a rant about the effects eczema has on our lives.

I am 26 years old and have suffered with eczema for my whole life. I was also born with severely clubbed feet. The funny thing is, I receive a lot of sympathy for my clubbed feet because it is an obvious, physical disability... but to me, my eczema is far worse! Sure, I can't stand for long periods of time, I can't tiptoe, i have a limp and my feet are deformed - But I really don't care, I've happily learnt to live with that. What stresses me out and depresses me the most is this infernal eczema.

Like many people here, I suffer with the flare-ups, burning, itching, redness and swelling all over my body, but especially my face and neck. I've also gone through the whole set of treatment processes: steroids, immuno-suppresants, antimicrobial, antibiotics, extended stays in hospital, GPs who don't understand, two lost jobs etc. I've arrived at the point of despair where I feel as though I'll never recover. But worst of all is the fact that nobody seems to understand... I have applied for Disabililty Living Allowance more than 10 times in 10 years and have been refused every time, even with the help of the CAB. Because eczema is just a little bit of dry skin, right? There are no costs involved to look after a little skin condition, right? Sometimes I wish the people that make these decisions could experience what we feel, just for a few minutes, so that they would realise that we aren't just moaners complaining about a little bit of redness or soreness.

But anyway, I wouldn't want to end my first post with total negativity! It's great to find a place where I can talk to other sufferers. At least we can moan to eachother, right?

Maybe we're only a few weeks away from some miracle cure! Keep on trucking, everyone.

[AnnaB]

Hi
You are maybe the 1st person who I can ask and talk to about acceptance or lack of it for eczema. I care for my 2 children and often say a lot of the frustration and depression comes from the fact that it is an endless cycle. As soon as it is improving it flares again. I keep telling family it is not like taking antibiotics and an infection going, it is endless. Your clubbed feet are endless but constant. Do you feel like I think that it is the variation to the endless cycle that exasperates coping with eczema??

[JohnS]

Hi AnnaB!

I think you hit the nail on the head. I was born and grew up with my disability so I have never known what it is like to have normal feet. The condition has never gotten severely worse or any better, so it has been an unchanging aspect of my life. The fact that I have never experienced anything different has probably helped me to accept the way I am.

Eczema is different because, as you have said, it is a rollercoaster cycle of good days and really bad days. Just when you feel that your skin might be calming down, suddenly that peaceful feeling is snatched away and you're plunged back into agony, hospital, medication and emotional stress. The unpredictability of outbreaks, unreliability of treatments, and unending cycles of good / bad are certainly some of the biggest factors that cause me despair over Eczema.

Hope that helps!

[AnnaB]

Hi John
Thank you, I struggle daily with my childrens eczema, dealing with how they are mentally and physically and how my head is managing for them. It is nice that you feel I have the balance of this nightmare in my head. Anna

[Foodallergyfairy]

Hi everyone. Well I can certainly empathise as I have what to me are the ugliest, wrinkliest, oldest looking knobbly blue-veined rough hands in the world! I have seen other people with eczema - and their hands are never anything like as ugly as mine. I spent many years hiding them, and still avoid handshakes - but as you get older you become a bit more resilient I think - its a case of having to, in order to cope. I dont hide my hands nowadays. And luckily there are not many idiots out there who make hurtful comments.

Recently when I commented on my colleague's nail varnish and said to her that it wasnt worth me bothering with all that as my hands are so ugly. She looked at my hands - which I was amazed she had not noticed before as we had worked together for some months, and she said "They are just hands". For some reason that meant such a lot to me. Lets face it, society is much too focused on looks and vanity these days - as evidenced by the amount of beauty parlors and "nail bars" filling up every high street. Its all wrong.

The trouble with us is - and this is exactly the same for EVERYONE, not just eczema sufferers, but even people we perceive to be perfect or beautiful - we think that when people look at us, they are immediately "homing in" on our "bad" bits - whereas in reality they don't really notice details, because they are too worried about what THEY look like and whether we can see THEIR flaws!!

Anyone who makes nasty comments to people who look a bit different are only making THEMSELVES look small.

These days I don't hide my hands anymore. I just think "let people stare if they want to, if it entertains them or gives them something to talk about then they are very sad individuals." I work as a receptionist/secretary - so my hands are always on view. I really don't give a flying fart what anyone thinks!

This. Thank you for this. I, too suffer from knarly, old-looking hands from my eczema and severe food allergies. You pulled a heartstring while I was reading this and almost dropped a tear....I know the physical embarrassment of severe reactions all too well, which keeps me from leaving the house and living a normal life.

As I stated on another post, I'm here to talk if you need support.....we have to stick together and support each other. I have lived with eczema and food allergies all my life and I am now 31. Sometimes I think about giving up. But I know that I am more than this disease...we are all here for a reason and a few people's ignorance should not halt or dampen that destiny.

Wishing you all a beautiful week!

Maya

[loumunn]

kids at my daughters (who has ezcema) comment on her hands and skin and she trys to hide it . We are not confident people and i wish she had the attitude to be like yes come have alook , touch it , we are not there yet - hopefully we can start been positive about it . It does look amess and its always bleeding - we find it difficult and upsetting as its only getting worse as shes getting bigger - started at age 7 and now shes 11

Worries Mum

[loumunn]

and now shes in hospital x