Happy New Year Hilary! I listened to this radio New Zealand piece yesterday, and it makes an interesting connection with your post, regarding treatments for shyness
Oh god, I sympathise. Raised 2 of my 3 with relatively severe eczema and the 3rd developed it later. Pinetarsol baths were the order of the day, never any soaps or scented washpowders. Always trying to minimise the use of steroid creams and trying alternatives like calendula ointment. As adults, they have learned to manage but aqueous cream is the order of the day. Still, they never use soaps and facecreams, sunblocks and moisturisers remain an ongoing exercise of trial and error with frequent discards as allergies develop. Told by the skin specialist at the time that it sits on the same gene as asthma and migraines. I have always thought severely asthmatic children would have been worse to cope with - life endangering, whereas eczema affects the quality of life, not life itself.
Thanks Abbie. Must be so tough for mothers of severely affected children. I wish my mother and her good ideas were still around. I have had both asthma and eczema all my life and have probably tried every conventional and alternative therapy around and most things work a little for a short time. Both conditions calmed down and flared up at certain times and decades. Unfortunately, steroids for both seem to be the most immediately effective, but who knows what they are doing long term. Long holidays at the beach with a lot of pleasant swims in the sea have always worked too. Unfortunately, they are elusive.
Also for those who don't consider this a real 'disability' post, apologies. It does definitely feel disabling at times.
It does definitely feel disabling at times.
Ta, Hilary. My psoriasis may not have threatened my physical wellbeing much, but it sure affected how other people responded to me. Sure hasn't helped my romantic prospects either.
Some years ago, Stats NZ justified refusing to release the main Census disability question results because people with asthma were 'incorrectly' saying they were disabled. That's the level of official ignorance we're dealing with.
Aye, it's a curse all right. Mine's so bad I am treated via the hospital system, and have been on strong immunosuppressants over the years.
It's a problematic condition because it has multiple causes and treatments, all used overlappingly. I've had a particularly severe flare in the last week due (I think) to the Auckland climate and pollen situation, by contrast to hot, dry Melbourne where I was the week before. I look like I've been badly sunburned. Even at the best of times, I look red.
It's quite life-affecting. I have to moisturize frequently, or with very sticky moisturizer (I prefer this, because it just works better). I pretty much coat myself with ointment on a daily basis, and before and after any swim (which is a bloody pain in summer when I might be swimming several times a day). I have to take pills daily, and get blood tests monthly to monitor their risk of giving me cancer. The long term degeneration to my skin from topical steroids is the worst part, though - I now have skin that tears easily. That affects a lot of activities. No more martial arts - I would end up bleeding everywhere from minor cuts caused by fingernails when breaking holds. Gardening has to be done with care - everything that can scratch will, and ungloved hands will get infected. I've had cellulitis from infected eczema several times. Also, the skin being thin means that I flush red like a beetroot when exercising, even when not particularly puffed at all.
The itching can, at times, be maddening. Antihistamines do help, as does moisturization, and good temperature control. But even with all of that, when 20% of your skin surface is inflamed, it's pretty hard to just shrug it off. It can trigger other problems big time. The worst is sleeplessness, which cascades to other health problems, including more eczema in a feedback loop. But susceptibility to infection is quite serious too.
And of course, it's embarrassingly unsightly. Can only really shrug that one off - it's like being fat - everyone is going to have an opinion on it. And of course I have to field questions from many well meaning people about every herbal remedy and treatment imaginable, as if in 45 years I haven't tried almost all of them, and got hundreds of hours of professional advice from hospital and private specialists who do actually grasp the underlying science as well as can be for such a difficult issue. I had one of the doctors at Greenlane recently tell me I was the most knowledgeable person about eczema he had ever met outside of the actual profession. But that isn't going to stop people telling me to put honey on it, or to ask if I've ever considered not scratching, or to try meditation. Usually, when these questions begin, I'm already meditating, twice as hard - once to control the itch and another time to control the urge to be rude and seek the path of quickest termination of the discussion.
I'm not bitter on these people. I expect it. It's a normal human thing to want to tell people about your tiny corner of knowledge of a massive field, if only to show that you sympathize. Share your personal anecdote about an inch round patch of eczema you once completely treated with over-the-counter steroids and the amazing willpower not to scratch that one itch. I get it, because I have to get it because it happens constantly. I find the fastest way to curtail the discussion is to just nerd out on it. Explain quickly the outline of my travails. Bore them with detail. Then quickly turn it back to being about them in some other direction.
This has brought lots of memories flooding back.
From early teens till my 30s was when I suffered the most. Looking back, it was probably hard for my mother. She tried all sorts of remedies and diets (hard to cook special food when you're poor and there are 4 other kids).
What changed in my 30s? On the advice of my doctor, I started using Dove soap (any flavour). The built-in moisturiser has broken the cycle where I'd start getting itchy after a shower (and basically stay itchy till my next shower).
Before that I was using all sorts of natural, no-additive, etc, etc soaps. My doctor's response to this was "they're all still basically detergents" (and therefore remove any natural oils from the skin). I can honestly say it's changed my life.
Other things that have helped massively:
- keeping my fingernails very short so nocturnal scratching doesn't leave me bleeding any more.
- steroid creams but only mild ones and in extreme moderation. (If I could tell my younger self to go easy on the steroid creams, I would. The skin on my hands is so thin now it breaks very easily.)
- creams for dry skin. My personal favourites: QV lotion for daily use, L'Occitane shea butter cream for when it gets really dry (it's not cheap but it goes an incredibly long way).
- eat well. Less fast food and alcohol, more whole foods.
- get enough sleep
- finding ways to break the itch/scratch cycle (whatever works for you).
Unmanaged, it can massively affect your quality of life. I don't know where I'd be without that doctor's advice.
Thanks all. It is really a hidden and unrecognised impairment. Ironically I have gone back to Phenergan (tablets) in an attempt to deal with allergies and itch, but even that only takes the edge of the intensity. And you are not supposed to drive with Phenergan. I am so envious of people who don't have to be alert at all times to possible aggravating irritants. Dog hair on clothing, a chair on which a cat recently sat, grass on a windy day or dust anywhere, are all problematic for me. Then there is nothing sharp enough to relieve the burning itch. Or enough pressure from fists rubbing eyes.
It's a strange disability. It is debilitating, but not in ways that people see. How do you measure a condition that degrades your ability to concentrate and sleep? That sounds like a mental health condition. Which is not to say that it doesn't affect mental health - I think most physical health problems do. But I found the chemical cures worse than the condition - phenergan helped me sleep definitely, but the waking was horrible, hours of grogginess. I don't really want to try mood altering systemic treatments.
I can say two other things that have helped. I don't use soap of any kind, except when washing hands. There just doesn't seem to be any point. Most soiling is water soluble. What isn't is typically oily, and soap cuts through that - along with any skin oil I have in there. I'd rather just leave the oilyness on, frankly. With some exceptions, of course - I'm not going to leave grease on my skin, or stinky fish oil. But those typically go on my hands, and I'll get them off with soap or alcohol, and then if necessary, remoisturize.
The other is physical exercise. I'd say this goes for most people, not just me. It seems to improve mental wellbeing a lot. Of course I have to do exercise that's appropriate for my condition and there are many disabilities that are much more limiting on that front. For me, swimming in warm chlorinated water is not good.
Dog hair on clothing, a chair on which a cat recently sat, grass on a windy day or dust anywhere, are all problematic for me. Then there is nothing sharp enough to relieve the burning itch. Or enough pressure from fists rubbing eyes.
Yup, scratching and rubbing never help. But it’s maddening that they feel like they do, temporarily. We’re primates, with a natural instinct to scratch at itches because that’s how we deal with insects.
Phenergan worked to get me sleeping, but the waking was so horrible it was worse than the condition. Groggy and irritable for hours. It was like being hungover every morning. I can’t claim to have this one licked – insomnia is another condition in itself and “sleep hygiene” may have a lot to do with it. But I’ve been sleeping a lot better since I started exercising every day (for about a year now).
ETA: I slept a lot better in Melbourne recently. I'm wondering if I'm not just allergic to Auckland.
Yes I wonder if I am allergic to Wellington. I think it might be that motels etc have less dust and minimal gardens than here.
Phenergan is not good when you need an active brain. Takes lots of coffee in the morning to function.
I have heard a bit about the successes of the Auckland GP Dr Joe Williams who has written a book about his treatment which is a mixture of lots of emollient cream, standard steroids and avoidance of junk food. But I think he manages to get his patients from fiery, scabby, infected outbreaks to something more controllable, rather than any long term cure.
Hilary, your mother was a wise lady but I doubt if you needed me to tell you that!
The braveness pills were pure genius, wish I had had them as a child
Yep, did yours develop in your early teens? Just when appearances begin to become important to even the most unselfconcious?
Daughter inherited this blight from her father...who tended to get patches in places normally covered. Not so his daughter. Got so bad that her paternal nana suggested I home school her to save her from derision from her (all girls') schoolmates. Not my girl.
She staunched it out...and it did cost her. BUT... as her stepdad will say..."there's always someone having a harder time than yourself."
Coco scalp with a tad extra salicylic added....applied to scalp then wrap in gladwrap. Leave for as long as possible then wash all the plaques out. Pinetarsol, sebitar, tea tree oil shampoo, aqueous cream, very low dose hydrocortisone creams. Some prescription preparations left her with patches of skin so thin she looked like she had been badly burned. Nivea creme...the best moisturiser IMHO.
The sun helps. She bakes when work allows. Peter and I were chatting to a guy at the Plastics Clinic one day who was in for a UV therapy session, he claimed that those with psoriasis have a low skin cancer rate. Don't know if this is true..
Peter's exposure to to a skin sensitiser and mutagen http://www.titanag.com.au/Products/MSDs/carbendazim_msds.pdf and the chemotherapy needed to treat the leukemia it caused has left him with extraordinarily sensitive skin. Trial and error has led us to a regimen that seems to keep the worst at bay without pouring a shit ton of chemicals onto or into him. He takes Vit E and zinc supplements....recommended by a pharmacist who found during his Master's research that zinc especially improves chronic wound healing so well that he did not understand why it was not standard treatment for those with skin problems. For general irritations or reactions to god knows what...I have concocted a creme made from non-ionic cream, bio oil, manuka honey (the real stuff) and a little lavender oil. Warmed and well mixed this gets daubed on any red bit. Very effective and also awesome for pressure areas. (the manuka re- oxygenates the skin cells...reversing damage)
A friend, who lives on a small block not far from us, and has also been sprayed with the same shit that we were, has such dreadful skin sensitivity that she lives on steroids and dreads going outdoors. Summer is a nightmare.
This carbendazim...sorry to bang on about it...is everywhere. Seriously... it is used to protect manufactured goods in transit from mould....sometimes Peter can't bear to be in the Warehouse when they have restocked the shelves....even I get the prickly, pins and needles reaction...this is why ALL new towels, linen, clothing and fabrics get a very warm heavy duty wash before they are used.
Happy New Year.
Best Christmas present (even though it came from the Secret Santa bag) was a telescopic back scratcher.
I see no reason why this post shouldn't be seen as a real disability post Hilary. There are lots of exclusionary definitions that are mainly for administrative purposes, and they will, rather irritatingly continue to exist. (Yes, I admit freely, I read Deborah Stone's "The Disabled State" which has probably had a big impact on my thinking about what this thing called disability really is). But there is quite a lot of difference between the administative definitions, and the world of thinking and theorising, which is a broader church, so to speak. Like the velveteen rabbit, your experience is real.
A fresh example of some local attitudes about disability, whipped up by a sewerblogger (donotlink). This is why we can't have nice things, like respect.
It stings! The disinfectant required to clean the eyes...
Wait awhile and Garrett will proffer his own particular veiwpoint
What horrible people. How do people grow up to be adults with so little empathy and understanding?
What horrible people. How do people grow up to be adults with so little empathy and understanding?
David Farrar’s supposed to be above that sort of thing, right? According to Andrew Geddis, Dirty Politics, by portraying Kiwiblog “as the “good cop” to Slater’s “bad cop” does his blog and him as a person a disservice. There’s far more nuance than that. In fact, I’d go so far as to say that I think the book should have held Kiwiblog up as an example of what political blogging can offer, as compared with the cesspool that National went diving into.”
Farrar’s been actively promoting that very cesspool for years. With Slater no longer able to effectively muddy the waters, his forays into nudge-wink nastiness are all the more starkly apparent.
What horrible people.
This has been preying on my mind all day.
I believe Farrar has crossed a line.
Aren't there laws against inciting hate speech?
Aren't there laws against inciting hate speech?
Nothing that would cover this. However he has signed up to the OMSA, which offers a complaint mechanism. Worth a crack.
Our Human Rights Act doesn't include disability as a grounds for hate speech. Needs reviewing.
Aside: Coal tar is still on the WHO list of essential medicines, and is also the original source of the ubiquitous paracetamol.
Kudos to your mum.
A fresh example of some local attitudes about disability, whipped up by a sewerblogger (donotlink). This is why we can’t have nice things, like respect.
What a hideous excuse for a human being Farrar is. He knows exactly what he's doing when he sets up a "how disabled is this guy really?" question in his post. And then he moved on to suggesting the man (who seems to have multiple problems) is a benefit cheat. Unbelievable.
Also for those who don’t consider this a real ‘disability’ post, apologies. It does definitely feel disabling at times.
FWIW, I agree as a longtime sufferer and the father of two of three girls who also have mild eczema. Thank you for this post. I’m somewhat surprised to know so many PA regulars share this challenge too.
Phenergan worked to get me sleeping, but the waking was so horrible it was worse than the condition.
I don’t think I was prescribed Phenergan, but it was something similar and around the age of 12. It was life-changing for me. Though, like Ben and others, it was somewhat debilitating. Since moving to Sydney, I’ve had to discontinue using antihistamines as they’re not regularly prescribed as part of standard treatment here. Instead, I now take a daily hit of Telfast.
I’ve had success, first as a young adult, with regular mild steroids combined with strong ones to manage flair-ups.
Heat is a killer for me – the moment I overheat, my base-irritation levels are unmanageable.