Anosmia Awareness Day 27th February 2017

As is now traditional around this time of year, it's time for me to point out that Anosmia exists, and list some resources for people who may be affected by this life-changing, but barely-known condition.  My life was turned upside down in 2014 by the simple act of catching a cold. My olfactory nerve died as a result of that cold, and life hasn't been the same ever since. I still feel the effects of that cold, and the resulting anosmia, every single day of my life.

Imagine never knowing if something smells bad, whether it's your home, your food, yourself.  Imagine never being able to smell your loved ones again, your babies, your partner, your family - not being able to bury your nose into their clothing and just inhale their essential scent. Imagine a sterile world where nothing smells of anything, and you feel completely isolated as a result.  That's anosmia.

Or conversely, imagine a world where things smell too much, but every single thing smells wrong.  Like, for example, spending a year or two where every single thing you smell smells like it's burned. Or rotten, or burned and rotten.  Then imagine every single thing that you taste also appears to be burned or rotten, or both.  That's parosmia, and that was my life for a very long while.

Or imagine that you constantly hallucinate bad smells, and can't think of anything else whilst it's happening. Imagine waking up in the middle of the night thinking your house is burning down.  Or that everywhere you go is covered in gasoline.  That's phantosmia, and it's incredibly difficult to live with.

Then there's cacosmia, and I have just one word for you here:  sewage.  Imagine your whole life smells - and tastes - like sewage.   I have been there, and I can tell you it was the worst time of my life.

Tomorrow, many anosmics across the world will be wearing red and using the hastag #anosmiaaware on Twitter to share their stories of anosmia, and I'll be amongst them. If you're interested in finding out more about the condition, you can have a look at the following links.

Anosmia Awareness Day Official Site (with further links): https://www.anosmiaawareness.org/social-media/
Fifth Sense (advocacy group for people with smell and taste disorders) http://fifthsense.org.uk

Oh, and my story will be featured on episode five of "Incredible Medicine: Dr Weston's Casebook", which airs on March 22nd at 9pm on BBC2  where I'll be talking about my struggle in learning to live with my conditions, and regain my sense of smell. I'm bloody terrified.

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Update at The Parosmia Diaries

It has been quite a while since I updated my other blog: The Parosmia Diaries, and I've had a little flurry of emails re my smell difficulties recently, so I thought it was time to dust it off and get back on with it.  So here's the first parosmia-based post in over a year (it's been a very busy year), you can read it here: http://parosmiadiaries.blogspot.co.uk/2016/11/an-update.html




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Cabrini Studded Leather Jacket from Navabi (A tale of intense nervousness and the BBC)

"Just wear whatever you feel most comfortable in!"  

Was there ever a sentence designed to fill a fat lass with such dread?  I heard it from the producer of a BBC2 TV programme I'd been invited to take part in, and, well, the thought of making my national telly debut in a decades old pair of Coca Cola-themed pyjamas and a lightly Doritos-stained Motley Crue hoody didn't really appeal, if I'm being honest*. Particularly not when the TV show in question is a serious scientific documentary about my anosmia and parosmia problems over the last couple of years, anyway.  So for several weeks in September, I was in a serious tailspin over what to wear for making a documentary, I have NOTHING to wear!

Actually, not quite true, I have lots of clothes, and I scrub up quite well (for an accountant), but I wouldn't say I really had style, unless "cardigan chic" is the topic in question, that is.  As some of the filming was to take place on Shepherd's Bush market (and you haven't lived until someone calls you a wanker on film when you're trying to talk about your trials with potatoes whilst walking backwards through a market, let me tell you) I knew a coat would be necessary, but in September a winter coat would have been too much and my rain coats were all designed with thinner people in mind (that thinner person being me, two summers ago, but hey ho).  I harboured idle thoughts about a purple coat from Joe Brown for about two minutes before the idea of a leather jacket popped into my head and I remembered about Navabi.

Navabi, if you don't know, is a supplier of designer clothes for the more generously proportioned amongst us. I discovered it quite by accident last winter, and went a bit bonkers buying faux-leather trimmed skirts and dresses by the score ("Leather dresses!  For big girls! Wheeeeee!" went my brain), then I went on a total clothes no-buy for the summer, because I was busy buying furniture instead.  I love Navabi (and no, they're not paying me for this blog post) because unlike SOME plus-size clothing suppliers they don't a) feature celebrity "designed" ranges b) don't cover absolutely everything in sequinned appliqué butterflies and c) don't feature "celebrity" "designed" ranges covered in appliquéd sequinned butterflies.  Whilst I'm all for appropriate sequinnage - yes, I do wear them to the office, more regularly than you might think, actually - butterflies and applique can get stuffed, frankly.  I also love it because it's proper designer-wear (sometimes with prices to match), and whilst there are the occasional potato-sack-style couple of items, they're deliberately done so, and not your only option if you're above a size 14, unlike some websites. Whatever your style, and whatever your budget, and whatever the occasion (and your size), there's something you can wear.  I have a selection of their shift dresses and long jumpers from last winter, and the styles are both classic and timeless. A trawl through the website is always a treat - even for me, a confirmed clothes and shoe-shopping hater.  Oh yes, I went there.  Not even slightly sorry.

Anyway, where was I?  I spotted this Cabrini studded leather jacket, and I fell, completely, utterly head over heels in love.  A biker style, but so much more feminine (and flattering) than that, it had to be mine. HAD TO! And, luckily for me, Navabi were incredibly generous on hearing about my "plight" (such as it was, I know, I know) and agreed to send me a sample for the filming.  I haven't worn any other coat since it arrived, and, after a couple of years without a leather jacket in my wardrobe, I'm wondering how the heck I managed without one.  You know when an item of clothing turns up, you put it on, and it feels so completely like "you", you never want to be parted from it again?  Well, that's this jacket for me.  "Wear whatever you feel most comfortable in"?  No problem.  Thank you so much, Navabi!  You can find the jacket (and much, much more!) here: https://www.navabi.co.uk/product/studded-leather-jacket-36989/?colorcode=2400 (not an affiliate link) It's buttery soft, comfortable, and aside from the studs being brass rather than the silver I'd expected, is exactly as advertised.

Me (sadly, sans jacket) with Sarah McCartney and the BBC Scotland production team

I'll talk more about the filming nearer the time of broadcast (providing, of course, that my section makes the cut!), but it was a huge amount of fun being a telly "presenter" for the first (and, no doubt, last) time, and, as well as being grateful to Navabi for solving my clothing woes, I'm also indebted a huge amount to the wonderful Sarah McCartney at 4160Tuesdays and the gorgeous Linda Pilkington of Ormonde Jayne, without either of whom the filming probably wouldn't have happened. 

Me in the jacket of joy - I had flu when this pic was taken
though, so please don't enlarge it, you won't thank me.

 I just have to save up BIG TIME for my next Navabi spree now ...


* And if you think I'm not wearing them RIGHT NOW as I type this, you'd be sadly mistaken, I'm afraid.
 
The Fine Print: PR sample.



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A Parosmic at the (An)Osmotheque

Did you hear the one about the parosmic who went to the perfume museum?*

A trip to the Osmotheque perfume museum in Versailles seemed like a dream come true when I’d booked it through Odette Toilette in April 2014.  Billed as an opportunity to smell classic fragrances dating back as far as the 1800’s (in faithfully recreated “original” formulations), plus an opportunity to talk through the history of those fragrances with master perfumer Thomas Fontaine of Jean Patou, it was a trip genuinely not to be missed.  I booked gladly, and forgot all about it for the best part of the year.

Come November, and the time to travel however, the trip seemed more like a cruel joke put out by the universe. Having lost my sense of smell completely in the meantime, only to have it partially recover (then further discover that all smells were now completely distorted; being both disgusting and nauseating), a trip to a perfume museum under the circumstances seemed rather perverse, not to mention slightly masochistic.  Who would want to put themselves through that? 

Turns out, I would.

On the Eurostar over to Paris, my travelling companions were sweetly amused when they found out my predicament: “Everything smells like poo?  Really?  Why on earth are you coming?” I had answers for the first and second of those questions ("yes", and "yes, I know, you couldn’t make it up, even it you wanted to"), but a clear handle on the third proved elusive.  One of the reasons was that I’d paid for the trip already, dammit!  Plus, there was the fact that it was a once-in-a-lifetime opportunity for a perfume nerdling like myself. A lot of my friends were going and I wanted to see them, and share in the experience with them. And finally (probably the most likely): I’m stubborn, and I HATE the situation I’ve found myself in, so I was blummin’ well going to show my nose who is boss, for once. 

A lunch at the Palais de Tokyo before the museum visit proved parosmia-challenging, consisting of giant chunks of raw radish with butter and bread, followed by fish (noticeably delicious) in a bacon sauce which proved in the end to be too inedibly creamy and slimy-feeling for me to finish off. But there was tapioca with slices of mango for pudding, and I could eat some of that, and as you might expect, the wine was good. Very good.  Not as good as gin would have been, but I digress. However, in a hugely amusing twist (for me), it actually turned out I was far better served by my food than my “olfie”*** colleagues who had ordered the “chicken in caramel sauce”, which turned out to be a far more literal dish than anticipated. Chicken in runny, buttery, sugary caramel. So for once I got to watch others being completely off-put by their meals in a way that felt both amusing, and, in its way, oddly comforting. Schadenfreude, perhaps? Anyway.  "Possibly", I thought, "today might not be entirely what I am expecting".  And so it proved to be, in a variety of ways.

The Osmotheque is oddly situated in what appears to be a residential street, and Versailles itself feels far more “surburban” than I anticipated.  I guess after spending time in Serge Luten’s rather monastic Morrocan-themed private rooms in his Palais Royal salon (again a surprise after the gorgeously insanely-lit deep-purple intergalactically baroque shop-floor) and, having experienced the marble and gilt splendour of Guerlain’s spa on the Champs Elysees firsthand,  then having felt my heart flutter in the beautifully “frou-frou" (not to mention marabou!) stores of Caron around Paris, I was expecting the world’s only “perfume museum” to be a little less, well ... less of an unassuming office block with an attached canteen, let’s put it that way.  I think I was expecting more of a temple. A monument. An eden.  Something with glitter, at the very least. Paris tends to have that effect on me! Admittedly, I never expect things to be merely “normal” in the City of Lights.

What is clear from the Osmotheque’s décor is that perfume is a serious, not-at-all frivolous business in France, and it was made clear from the outset of our day that maintaining the history of the perfume industry is also a serious undertaking.   Thomas Fontaine, who led our discussion on fragrance, also takes his perfume seriously.  French perfumers, with a few gloriously eccentric exceptions generally do, in my (brief!) experience. Thomas, who is a charming, handsome, and entertaining gatekeeper of scent, treated us to a brief background into the history of the Osmotheque itself, then rattled off some entertaining statistics and “facts” about olfaction and fragrance, before taking us through a guided sniff of 30 or so fragrances through the ages.  (I’ll discuss why the “facts” in the “facts about olfaction” part of that sentence is in inverted commas in a later post – it is too big a digression to go into here).  We started with fragrances from 1880 and worked our way forwards to (almost) the present day.

Beginning with Lubin and Eau de Lubin, alongside Vinaigre des 4 Voleurs as examples of the earliest, and entirely natural, fragrances, we quickly moved onto two unabashed classics, Fougere Royal by Houbigant and Jicky by Guerlain as synthetics became important in the making of perfumes.  Each fragrance was presented with a little history of the notes, the perfumer, the perfume house presenting the fragrance, and a notation of why the perfumes were important, or just noteworthy in themselves.  Also included in our “tour of fragrance” were original formulations of Guerlain’s L’Heure Bleue, Chypre from Coty – so influential an entire category of fragrance is named after it to this day – Tabac Blond by Caron, the original Arpege by Lanvin, Shocking by Schiaparelli, and Joy by Jean Patou.

Going through the fragrances one by one, and learning more about each one’s tiny place in history was fascinating, even when (as I’d feared), I couldn’t smell much. And, it turned out that much of the little that I could smell at times was indeed parosmically distorted.  The alcohol that dilutes many fragrances has a salty, metallic, oddly savoury scent to me, completely masking any ingredients, and this was compounded by the sweetness of many fragrances also causing a strange flatly-stale vanillic effect, so many of the fragrances we sampled simply smelled of salty, savoury, vanilla, in a way strangely reminiscent of bacon-flavoured candyfloss after a night on the Southern Comfort, if you can imagine such a thing.  Headache inducing, and slightly stomach-churning, but not too terrible.  But then, violets happened.

Specifically, Vera Violetta by Roger et Gallet happened.  I realised that what I could smell wasn’t a booze-soaked gastroenteritis-plagued pig who’d been rolling in icing sugar, like the previous fragrances, but actual, real and undistorted violets.  This was the first thing I’d either smelled at all, never mind “correctly” in over six months.  Do you know what smelling something undistorted is like after six months of either smelling nothing or only smelling sewage for more than half a year?  Well, whatever you’re imagining now, you’re wrong, let us put it that way.  That first, ever-so-faint, and rather prickly smell of violet was probably the most beautiful thing I’ve ever had near my nose, and will probably remain the most beautiful thing I’ve had near my nose for a long time yet to come.  There were tears, and for the first time (but not the last, it turns out) since losing my sense of smell, they were happy tears.  No parma violet has ever smelled so sweet, not will ever do so. 

Other revelations followed, with pointy and fresh citrus in Jean Patou’s 1000, and Rochas Moustache Concentree, and with more violetty ionones turning up  in L’Heure Bleue, and Bourjois Soir de Paris, it was a revelation that not only were there things that smelled “right” to me, but things that smelled “good”. This, coming along at a point where I genuinely thought I was having to resign myself to never smelling anything “nice” ever again, was a turning point for me.   I hadn’t realised just how dark, and unfulfilled, a life either without smell entirely, or a life with only bad things to smell had been until then.  Violets were a sweet revelation, but a bittersweet one beneath the initial happy reveal. 

I also found that I was smelling even non-violet or citrus fragrances much better at the end of the session than at the beginning, which was another revelation.  From what was genuinely one of the darkest points of my life, a tiny, purple light had started to beckon, and, unbeautiful though it may be in its own right, the Osmotheque now gains landmark status in the heart of this parosmic perfume writer at least.  All in all, if you can smell (and, as it turns out, even if you think you can’t) and have an interest in perfume, then a trip to the Osmotheque is probably the most magical experience, comprising theatre, history, and, of course, perfume,  that you can have in an office block in the Paris suburbs.  I urge you to go.  But if you can’t get to Paris then Odette Toilette is bringing the Osmotheque to London in May, and I’ll be there once more, parosmia be damned.

All I need now is a violet and citrus perfume of my very own.  There’s one on the way, it turns out, thanks to an astonishingly talented (and incredibly generous) friend, but that is very much a story for another day …

* How did she smell?**

**Terrible!

*** An “olfie” is how dysosmics sometimes describe a person who can smell “normally”.

Note: This piece was first published in a slightly different form on The Parosmia Diaries at: http://parosmiadiaries.blogspot.co.uk/2015/03/a-parosmic-at-anosmotheque.html reproduced here by permission of the shared author.

Many thanks must go to Jo Fairley for the horrifically fabulous pun in the title, and for much more besides.

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Anosmia Awareness Day: 27th February 2015

This Friday, 27th February is Anosmia Awareness Day.  Ordinarily, this is a date that would probably have passed without too much comment at Lippie Mansions, but this year is different. Very different.  

Most people think not being able to smell is just a little thing, but please let me tell you that it is not.

When I lost my sense of smell last year, I had literally no idea just how devastating a condition it would be, and just how much my life would be changed as a result of the cold that caused my olfactory nerve to die.  I've had to give up reviewing perfumes, and beauty blogging has had to take a bit of a back seat to learning to deal with my condition. There are so many things I can't eat, there are activities I simply can't do, for example, I can't go to a coffee shop, I can't stand near someone who has been smoking.  I've had to avoid eating out. I can't drink wine, I can't just go to a sandwich shop and pick something up for lunch.  Even brushing my teeth makes me puke! I can't tell when my oven is on fire - and this has happened recently.  I can't tell when food is spoiled.  Worst of all, for me, I can never predict the things I'll have a reaction to, which means I've lost control over my life, and it has been an incredibly difficult 12 months as a result.

On top of anosmia and its attendant conditions parosmia and phantosmia, I've also suffered from a crippling depression, and no little amount of social anxiety as a direct result of losing my sense of smell.  I never expected this to affect me so badly, and to say it has been difficult to deal with would be a mild understatement. Without the help of my family, my friends, and especially Fifth Sense, I'm not sure how life would be right now.  There was a point last year where I didn't really know if I could cope for much longer, as there simply didn't appear to be an end in sight, and my medical diagnosis was, basically, "wait it out, you'll laugh about this one day".  I'm still not laughing, and I'm not sure when I will.

I have been exceptionally lucky in that my doctors have taken me seriously, and I've been fairly informed in my own right about the condition because, as a perfume writer, research about olfaction has always been of interest to me. I'm now getting the medical help I need, but Fifth Sense have helped me in many ways that my doctors couldn't.  There was a conference for fellow anosmics and parosmics like myself last November, which helped me when I was very much at my lowest ebb, and I can now pinpoint this event as the date where I was able to start turning my life around.  

Life is getting better these days, but I still have a way to go, and I will need more support from my friends, my family, my medical team, and yes, Fifth Sense, which is why we're trying to make this year's Anosmia Awareness Day the best ever, because not everyone who suffers as I have has been lucky enough to have the support system I've been able to create.

This year, Fifth Sense are trying to raise funds to help others who are in a similar situation to myself.  There is very little research being done to either look at the causes of anosmia, or into cures for anosmia, or even into gadgets to help anosmics get by in every day life.  If you have a penny or two - every little helps, no matter how little - to spare, then, please, consider donating to Fifth Sense this week.  If not for me, then in the hope that you never catch a cold that turns your life inside out too.

In addition, all this week, Fifth Sense are asking you to tweet the smell you think you'd miss most if you lost your sense of smell, by using the #LongLostSmell hashtag, please get involved!  I shared  mine on the Fifth Sense Facebook page last week, but there have been some amazing tweets on the subject, and I've loved reading them - and occasionally weeping over them - over the last few days.

I'll also be featured in the Guardian this weekend talking about my experiences of anosmia and parosmia, so please keep an eye out for that, oh, and I'm working with Basenotes on something rather amusing too - I'll keep you posted!

This post has been crossposted between here and the Parosmia Diaries.

The Even Finer Print: We're not featuring full fragrance reviews on Get Lippie at the moment owing to illness - please see The Parosmia Diaries for more. 


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New Blog ...

 Don't worry, Get Lippie's still running, but I've started a new blog to detail my travails with parosmia.  It won't just be me whining about living with a new disability, I promise, but it will detail my personal journey, alongside talking about the discoveries I've made about the condition, the occasional book review, and ... perfume reviews!  You haven't lived till you've tried to review a perfume your brain simply can't handle ...

Anyway, the first, slightly rambling, post is live now, you can read it here.

If you want to know what I've said about anosmia and parosmia previously, you can read my posts at Basenotes here, and on Get Lippie here.  You can also read more about a whole range of smell disorders over at Fifth Sense.

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