Thursday, 19 March 2015

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 last year.  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, and then 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.

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.  Some of the reasons included 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 before the museum visit proved parosmia-challenging, consisting of giant chunks of raw radish with butter and bread, followed by fish (delicious) in a bacon sauce which proved in the end to be too inedibly creamy and slimy-feeling 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.  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 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.  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 feels far more “surburban” than expected.  I guess, after spending time in Serge Luten’s rather monastic private rooms in his Palais Royal salon – again a surprise after the gorgeously insanely-lit purple intergalactically baroque shop-floor -  and having experienced the marble and gilt splendour of Guerlain’s spa on the Champs Elysees firsthand, and then having felt my heart flutter in the beautifully “frou-frou and 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.  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 d├ęcor is that perfume is a serious, not-at-all frivolous business in France, and it is 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 that day also takes his perfume seriously.  French perfumers, with a few gloriously eccentric exceptions generally do, in my experience. A charming, handsome and entertaining gatekeeper of scent, Thomas 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 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 ever smelled so sweet. 

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

Tuesday, 10 March 2015

On depression, “coping”, and puking in the shower.


I was interviewed in the Guardian the week before last (you might have read it, I’m the lady who smells sewage), and the feedback I’ve had from that piece has been absolutely fantastic.  There was a great interaction with the people who commented, I *nearly* got on the telly about it, and then I had to spend a few days battling with both my conscience, and the Daily Mail, who want to take pictures of me looking sad whilst holding a bottle of perfume in the name of awareness raising. In the end, my conscience won out, and  I will not be looking sad in the Daily Mail any time soon, you may (or indeed, may not!) be pleased to hear. Sorry mum!
 
I’ve also had a million emails to respond to, and I’m slowly working my way through them, each one, whether it has been a message of support, or the sharing of a tale similar, or even the offer of some well-meant (if occasionally slightly wonky, medically-speaking) advice, or just some kind words from an expert in a related field has been gratefully received, and I’m slowly working my way through replying to all of them.  Hopefully by the end of the week.

As a result of all this activity, I’m a bit knackered.   After a good couple of weeks on the smell front (or what passes for good for me, anyway) there was a new wrinkle this weekend.  I’d thought for a while that our towels were “smelly”, because whenever I washed my hair, and unwrapped it from the towel, my hair would smell awful.  Turns out it’s not the towels.   I discovered on Sunday, via the unlovely medium of puking in the shower when washing my hair, that it is actually the smell of my own wet hair that is the unpleasant thing, and that the effect is getting worse.  If nothing else, being in the bathroom when you are parosmic is never boring!

The irony here is killing me.  I have a condition that makes me paranoid about how I smell (because, generally, I can’t smell myself at all), but the act of physically getting clean makes me sick.  Brushing my teeth makes me gag so regularly (even with the cinnamon toothpaste) that I barely even notice it now unless it’s spectacular, and now my own wet hair smells like burning shit.  If I let my hair air-dry it smells bad for hours (I have a LOT of hair), but HOT wet hair, under a hairdryer for example?  Oh my.  Don’t even go there.  Seriously. Don’t.

I have not taken to this new discovery well.  After a week or so of people telling me I’m “coping” so well – because I can make jokes about my condition on the internet – Sunday’s discovery brought both sorrow and completely unexpected rage.  And I definitely did not cope with that well, ending up in a Facebook ANGER RAMPAGE of HULK SMASH proportions towards a completely innocent party, for which I’m still feeling guilt and shame and at a loss how to fix the situation.  And I’m still sad.   And angry.  And guilty and ashamed.  I’m all of those things (and grieving, and depressed, and just plain really fucking confused, and there’s a tonne of stuff I’m feeling that I can’t even name, I suspect) and, for once, I’m not sure which one is the worst. Life is currently a perfectly blended whirlpool of crap, with me at the epicentre wondering how the hell that happened, and where to start  the painful business of cleaning up after myself.  If you got spattered, I’m desperately sorry.  Truly, I am.

I haven’t really talked about my depression on here because it is painful, and I am still working it through.  I admit that I have been incredibly lucky in that both my employers and my medical support team have taken me and my condition seriously, and have allowed me space and time to deal with it alongside giving me the support I need in order to continue trying to get through it all.   After a good-smelling, and relatively happy couple of weeks, (I discovered a bacon I can eat!  It doesn’t taste much like bacon, but by god, it’s better than it was!) my weekend was a painfully unhappy reminder that, actually, I do still have a serious, and limiting condition, and yes, I am still depressed, no matter how “funny” I can be on the topic at times.   

I have so many “coping mechanisms” in place these days that sometimes I forget that life wasn’t always like this, I’ve almost come to accept that how I live now is the new normal, in effect.  So, when just one of those mechanisms  has a fail, it seems like a much bigger disaster than maybe it should be.  For you a bad smell in the shower probably means you need a plumber – for me, a new symptom, and yet another thing I have to find a (possibly permanent) change to my life in order to minimise, then an anger/grief cycle all over again.  And, whimsically irrational though I can be even at the best of times (ask me about facecreams in pots, I dare you, or mention the words “chemical free” or “homeopathy” within my hearing, if you want to hear me being totally rationally irrational), I do NOT like being this sort of irrational, at all. 

So no, I don’t always “cope well”.  Some days, like Sunday, I’m barely hanging on by the fingernails I can no longer paint because of the smell, and I can be rather emotionally … incontinent … as a result. Facebook friends, beware the black puppy, it’s the sign that things are not well in Lippie-land. 

Most days, I’m simply “coping”.  Not well, not badly, just “coping”.  Because I have to.  It is what you do.  There are people coping with worse things than my problem all over the place, but this is my burden, and it’s a bigger one at times than I ever expected. Coping is what I HAVE to do. At this point, coping is almost a hobby, much as it may well be for anyone with a life-altering medical condition.

The alternative is not, frankly, an option.  Parosmia passes, this I know.  And things are getting better.  This I also know, and can quantify.  But here was a time when I didn’t know any of that, and I did, genuinely, give consideration to not coping. I am not going to go back to that place.  I can’t.   September and October last year were an incredibly dark time, but it passed, as will how I feel today, and so will my condition. But in the meantime, as I wait for my long recovery period to get to its destination, I will make jokes about parosmia.  I will campaign about it.  I made the tough decision to publicise my condition as a way to possibly help others who felt as alone, and as bleak, as I did when this happened, and, whilst that is tough (I will happily talk to anyone about anything, except if it is something I really have feelings, as opposed to mere opinions, about), I do it because it is IMPORTANT.   And I will attempt to give myself a break when the days are bad, and coping fails, as it occasionally inevitably must. Sometimes that’s the hardest thing of all to deal with, the failing, and I am not good at dealing with the overspill.

But, if nothing else, my in-box this last week or so has proved that my campaigning, and blogging, and even my joking is important to more people than just myself, and the emails and texts I’ve had has proved it in spades, over and over.   And for that, I am grateful, so I’ll keep on coping no matter how shitty my hair smells.  The towels, however, are going on a boil-wash.

Monday, 23 February 2015

Anosmia Awareness Day: 27 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!

Tuesday, 17 February 2015

The Uninvited ...

Allegedly, I fart.  Only very occasionally, and obviously it is only ever the very merest toot that smells (faintly) of sunshine, lollipops and violets.  I had it checked. Most of the time, it is easy to discern that a little … um … gas needs to pass, and we can make arrangements to do what comes naturally in a manner that neither disturbs nor offends our fellow companions.  But there’s one situation that anosmics/parosmics/dysosmics fear above all others:

The Unexpected Trump.

We all know the ones, you’re taken unawares and, almost before you’ve even registered that you have to … go … it has already gone.  Gone out into the ether, potentially polluting your immediate atmosphere with methane, sulphur and all the other ingredients that combine to make that particularly unmistakeable aroma.

But, imagine that’s happened in the office – and this has, of course, NEVER HAPPENED – and you have no way of knowing how bad (or not) what you’ve just unleashed actually smells.  What do you do, when you can not only NOT smell yourself, but you can't smell anything you produce, either?

Do you:
Sink lower into your seat, and feign complete innocence? 
Walk away, potentially leaving a little whiffy gift for whoever remains behind? 
Apologise to your compadres and wish silently for death from utter humiliation (comes complete with risk of, if it is not a smelly boff, drawing attention your botty burp without needing to)?
or (my own personal favourite):  
Wait for someone to mention it, then deny, deny, deny all knowledge. (I would occasionally add a further fillip with the “smelt it/dealt it” axiom when challenged?  IF, of course, this had ever happened.  Which it hasn’t.  Ever.)

Man, I never realised I’d miss the smell of farts when this condition started.  Or why  This is a blog post I never thought I’d write.  Share with me your coping strategies!

What I think dysosmics need right now is a charcoal pad for special occasions that monitors potential whiffs and gives a reading of:

“Fine – stay put/Deny if challenged”
“Apologise”
“Blame the dog/cat/boss/office nemesis”
“Run. Run quite fast”
And finally:
“Resign/leave the country/change your name immediately”.

 Any takers?  Odour Eaters, I’m assuming you have the technology.

Monday, 5 January 2015

How to manage/survive your parosmia.

First of all, let me say I've been overwhelmed with the response to this tiny blog!  I've had emails from all over the world, and I've been very touched by some of the stories my readers have shared with me. Thank you so much for getting in touch, and I'm very glad some of you have found my blog posts helpful.  There are lots more posts coming now I've had my Christmas break, I promise!

With that in mind, today I'm going to attempt to answer the question I've been asked most in the emails, which has been "Have you found anything that helps?" Well, yes, I have.  A few, anyway, and I mention them here in the hopes that they'll help some of you, too.   I remember well the first time I saw my ENT surgeon and asked him if there was anything I could do to relieve my symptoms, as it was an incredibly bad day.  He just gave a mini-shrug and said "I'm sorry".  The simple fact is that there hasn't been much research into parosmic triggers, and therefore, there's not been much research into cures for them either.  I'll come back to that in another post, however.  For now, here's what's in my "Parosmia Kit" for bad smell days ...

First things first:

Even if nothing else on this post helps, or is practical, you must get one of these:
  
NeilMed sinus rinse kit, which is currently available from Boots for £12.99.  According to Dr Carl Philpott, the UK's leading dysosmia expert, rinsing your sinuses with saline is still the most effective treatment for various nasal issues, in particular dysosmic conditions. However, this is not to say they are a cure, but they can help, and, unlike drugs,or surgical interventions sinus rinses don't have any side-effects. Try and rinse once a day, every single day without fail.  You can rinse more often if you're having an incredibly bad smell day, at some points, I have found myself rinsing two or three times a day.  It won't stop the smells, but it can help soothe your inflamed nasal tissues.

I find tipping my head slightly forward, and to the side I'm rinsing helps too.  Please though, never ever try rinsing your sinuses with plain water.  They will BURN.  Your sinuses need the salt.  You can use a neti pot, too, but the squeezable nature of the bottle allows you more range to find a comfortable rinsing position.

I also carry a Sterimar Nasal spray (which is basically seawater in an aerosol) in my handbag, for when I need relief but it isn't convenient to do a full sinus rinse.  If you are taking nasal steroids, by the way, you may benefit from pointing the spray towards the inner corner of your eye, rather than straight upwards.  The olfactory nerve is just below the eye, and this will help you get your steroids where they need to be.  This is the single useful tip my ENT gave me, and he was right, it does make a difference.

Toothpaste:

I found switching to a cinnamon-flavoured toothpaste really helpful, as mint toothpaste was regularly making me puke.  Personally, I like Toms of Maine Whole Care in Cinnamon Clove, which I get from Amazon, but thanks to kindly in-laws and various amazing friends who have been to the US recently, I now probably have around a two year supply.  Unflavoured toothpastes for some reason didn't work, as the texture became very quickly unbearable, and the cinnamon flavouring overpowers the gag reflex for some reason.  I just wish non-minty toothpastes were more widely available in the UK, and ones aimed at adults, to boot.  I just can't face strawberry or banana kiddy toothpastes in the mornings!

Eating and drinking:  

One of the hardest to deal with parts of parosmia is that eating and drinking even the blandest of foods can be difficult, the distortions that come hand in hand with this condition mean that everything tastes "wrong" and some things can taste so wrong that they are nauseating.  Nonetheless, I have found some things that really help.

Hot Sauce

Basically, you need to become friends with spicy foods.  Spices, particularly hot spices stimulate the trigeminal nerve rather than the olfactory one, in effect causing a mild pain response rather than being an actual "flavour".  For parosmics, spices can "mask" the olfactory distortion and make previously unpalatable foods more acceptable. I carry a little bottle of Sriracha around with me at all times for food emergencies, but my favourite hot sauce of all time is actually the Lively Habanero Sauce (the yellow one below), which I always have had several bottles of on the go, even before my parosmia began. Luckily, this has barely been affected at all by my parosmia.  Find a hot sauce you like, and put it on everything.


Holy Lama Spice Drops

I have had trouble with tea and wine.  The two best drinks! Luckily, I found quite early on that cinnamon was a bit of a "superfood" for me, and so I've been adulterating everything with cinnamon ever since.  I had to swap normal tea for chai for a while, and I discovered Holy Lama spice drops quite by accident when putting together an online shopping order, and thought that the Tea Masala drops would be a great addition to my handbag parosmia kit

Just a drop, added to a "bad" cup of tea can make all the difference.  In fact, it worked so well I splashed out on the mulled wine drops, and the cinnamon drops for when I'm struggling with wine.  I like wine, but occasionally the woods the wine is aged in causes a parosmic reaction, and it's difficult to drink.  A drop of mulled wine spice, or cinnamon in a "dodgy" glass can make the wine seem more normal to a parosmic palate.  Of course, you can just drink mulled wine!  Or, gin.  Gin, being quite spicy in its own right seems to not be affected too much by parosmic distortion, which is great news! Well, it made me happy ...

Chocolate

Sadly, I have not found anything at all to make milk or plain chocolate palatable. I'm sorry.  I have tried!  White chocolate, however, does not contain cocoa solids (which appear to be the trigger), and, as such is edible.  I have a weakness for the occasional white chocolate Twix, but I'm deeply indebted to Rococo for inventing their White Chocolate Artisan Bar in Cardamom.  It has got me through many a chocolate-related crisis, when there is nothing else suitable.  I do still occasionally long for a really good cup of hot chocolate though, I admit.

Coffee.

Coffee is  ... unsalvageable.  Sorry.  Drink Chai instead. You know it makes sense.

Bacon

Bacon works quite well with hot sauce.  But I've found that fried halloumi can give you a similar salty-crisp effect if you slice it thinly enough, without the parosmic effect.  It's not the same though. I miss you, bacon!

Citrus juices.

Many things can be salvaged by the judicious application of a little lemon juice.  Chicken, potatoes, fish (although fish seems largely undistorted in my experience so far),  anywhere you think hot sauce might be too much, try a couple of drops of lemon juice instead.

Potatoes

Cooking potatoes with lemon can be really good - this is my favourite lemon-y potato recipe - but I've found that, nine times out of ten, I just have to suffer the muddy, dull, nasty flavour.  That or drown them in ketchup - for a parosmic, tomato ketchup can be a lifesaver, particular is there is a concurrent loss of smell, as it has four out of the five basic tastes (rather than flavour - more about taste vs flavour coming soon), sweet, sour, salty and umami, lacking only bitter. Heinz now make a ketchup with chilli.  I use a LOT of it.  

I have had better luck replacing potato crips, however, with tortilla chips, and lentil-based crunchy snacks.

Some (surprising) things that still taste "good":

Carrots
Raspberries
Gin.  (I may have mentioned this).
Citrus fruits - but not grapefruit.

Carrots and raspberries contain ionones.  I made an incredibly surprising discovery about ionones at the Osmotheque in Paris quite recently, which I'll go into more detail about in a couple of upcoming posts.  But for now, my vegetable of choice is carrots.  With everything.

Texture

Many parosmics are also smell-compromised (hyposmic), and this means we don't taste as well as we used to, in spite of the distorted effects we get from our malfunctioning olfactory nerve.  This means that texture is more important in our food than it would usually be, and certainly I find that if my food lacks a mixture of textures then I will struggle with it way before I have eaten nearly enough to assuage my hunger.

I have found these a godsend:

for adding a little crunch and texture, and interest, to my meals.  I carry a tiny pot of these around with me everywhere.  For pepping up a pappy sandwich, or just dropping a couple onto a bland meal, they're very good for breaking up a gloopy meal, without adding too much in the way of distorted tastes, such as would happen if I used potato crisps for example.

By the way, Mexican food generally has been revelation to me whilst I've been suffering from parosmia! The mixture of textures, the spicy flavours, and the freshness of the ingredients have all made eating Mexican food far more easy for me than any other cuisine by far.  Wahaca, always one of my favourite places to eat even before the parosmia kicked in, has been a lifesaver when I've been sick of the cooking smells at home, or just struggling to eat anything at all.  I can't express enough how great it has been to know there is somewhere where I can go and eat with very few problems.  I'd eat there everyday if I could.  Fish tacos - hold the black beans - for the win!

There are more things, and I'll keep you posted as they occur to me.  I have started a Pinterest board for my finds, which you can find here: Get Lippie Anosmia/Parosmia/Hyposmia, and I add to it quite regularly. But basically I carry at all times: hot sauce, cinnamon-flavoured gum, crispy onions and chai spice flavouring, which seems to cover most eventualities. 

If you have any other suggestions, or have any other triggers (what bothers me might not bother you, I'm aware), let me know in the comments or drop me an email, I'd love to hear from you!

Tuesday, 25 November 2014

What is Parosmia?

So, I'm a couple of posts into the blog, and I realise that I haven't said what parosmia actually is.  Silly me. Here's the lowdown on a couple of olfactory conditions, and my experience of them. Incidentally, conditions affecting the olfactory nerve are generally grouped together under the term Dysosmia.  Therefore dysosmias include (but are not limited to) the following:

Anosmia: This is a complete inability to smell, and is probably the best-known (and certainly the best-researched) form of dysosmia. Causes can include head injuries, viruses including colds and flu, and chronic sinus disease, but a great many cases of anosmia are idiopathic, having no discernible cause whatsoever.  In the early stages, anosmia can often be mistaken for a taste disorder as the first symptom that a lot of people really notice is their food not being as flavourful as usual.  However, true taste disorders are rare, and I'll deal with this in another post. 

Perfume people often claim to be "anosmic" to one ingredient or another (usually musks for some reason), as a way of saying "I can't smell this particular ingredient", but this isn't actually a form of anosmia in the technical sense.  Before "The Honk", I was "anosmic" to a couple of ingredients, notably hedione, but as hedione doesn't actually smell of much in itself, being used to give a feeling of "light" or "airiness" to fragrances, it wasn't really that big a deal.

Fine Print: Please note - a great many cases of anosmia are congenital, meaning someone has never had a sense of smell develop at all. However, for the general purposes of this blog I'll be referring to acquired anosmia, unless specifically noted in the text. 

Hyposmia: If you're not totally anosmic then you are hyposmic.  Anosmia is the total lack of smell capability, whereas hyposmia is a greatly reduced sense of smell. If you think of smell capability as a volume control, then "normal" would be ten, and  anything below that ten would be hyposmia.  I'm currently around a three or a four. I can only smell through one nostril, and it remains to be seen whether I'll ever smell again through the other.  I may get to five, one day, and if I'm really lucky, I might even hit the dizzy heights of a seven or an eight, but it looks unlikely from here, right now. 

I was totally anosmic for several months earlier this year, and my sense of smell started to return after three months or so, which was thrilling - I could smell A*Men from across a room (not such a difficult feat, admittedly), and MrLippie was back to smelling like a giant Twix again, which is always fun - but ironically, that was when the real problems started. Read on ...

Phantosmia: Essentially, smelling things that don't exist. Nasal hallucinations, if you will.  I've spoken to a few people about this, but the main smell that people report are burning smells.  Lots of people report the smell of diesel, cigarettes and petrol.  Sometimes these smells can be so strong that the eyes and throats of sufferers will burn, as if the smell really exists. But it doesn't. 

In my case I could smell burning meat.  Specifically, that red-laquered, shiny char sui pork that you often see hanging in the windows of Chinese restaurants.  The burning-sweet stench - as if someone had taken a blow torch to a pork belly or two - would appear at random intervals with no warning whatsoever, and linger for hours.  And hours.  And days.  Nothing would make it shift, not even applying neat essential oils to both the inside and the outside of my nostrils.  I was quite lucky, this stage only lasted a couple of weeks, but it was pretty annoying whilst it was around.  But this brings me round to why the blog is here:

Parosmia: a distorted sense of smell.  Essentially: I smell funny. What might smell like a rose to you, or a violet, or a good cabernet will smell like sewage or rancid onions or metallic vanilla to me. According to my Ear, Nose and Throat surgeon ("ENT"), this is a sign that the olfactory nerve that was killed off after my cold earlier this year is now regenerating, and this is a good thing, therefore. However, my brain now has to "re-learn" how to associate the scent-memory of a stimulus to the stimulus itself, something it currently struggles with, hence the distortions.

What this actually means in practice is that everything I smell smells wrong (and bad).  Everything I eator drink tastes wrong (and bad) and, if you read my "Day in the life ..." post, you'll know that it also means is that some things I smell or eat/drink are so wrong (and bad) that it can make me ill.  I won't lie, and, without wishing to sound like a drama-queen, or like I'm attempting to write misery-porn, it's been hell.  Genuinely.  There's a saying "you don't know what you've got till it's gone", well I'd add to that "you don't know what you've got till it buggers off without warning, then returns three months later turning your life into an smelly nightmare and makes you sick every day" Yeah, yeah, melodrama, I know. Whoops.

Cacosmia: Exactly the same as parosmia only everything tastes and smells like shit. Literally. I only had this for a short time, it arrived quickly, and was gone almost as fast (after a week or two, tops), but I genuinely thought I'd go insane during that time.  There was a moment when I simply didn't know how I'd carry on if life continued like this, but I did, and now here I am boring the pants of everyone who will listen about how I ate a peanut today! Or status updates like: "Crisps, how I defeated my nemesis" on Facebook.  Victories possibly don't come much smaller than this, but I'm celebrating them anyway.  You can always put me on ignore.

Euosmia: More or less exactly the same as parosmia and cacosmia, but the distorted smells are pleasant.  Smells like cakes or flowers, or perfumes for example, but this is vanishingly rare.  I met a lady recently who had episodes of "lovely perfume" phantosmia for minutes at a time, but this is the only example I've come across.

I am not a doctor.  I repeat: I AM NOT A DOCTOR. I used to be a fragrance writer, and have had to put that on hold for the time-being. As such, my medical expertise is limited to knowing one side of a sticking plaster from the other, so please see a doctor, or check Fifth Sense, if you think you've been affected by anything mentioned in the foregoing post.

All of the above has been based on my personal experiences with the dysosmias mentioned, and (some of) the research I've been able to do on them, so far.  There basically isn't very much about parosmia around that I could find, and it frustrates me no end. I'm hoping, as I go on with this blog, to learn a hell of a lot more about the conditions I've suffered, and hopefully this will become a resource for other people who suffer too.  I recently had a rather "heated" exchange with a French perfumer about some of the myths surrounding anosmia, and I'll address some of those in a future post too. 

Thursday, 20 November 2014

A day in the life of someone suffering from parosmia

I have good smell days, and bad smell days.  Being a parosmic with a distorted sense of smell, I can usually tell what kind of day it is going to be by how the taste of my saliva is as soon as I wake up.  Just a hint of putrescence? Marvellous!  Like I have the worlds worst hangover and an African Elephant with Delhi Belly has had an unfortunate accident in my mouth?  Bad Smell day ahead!  Proceed with caution.

A bad smell day will mean that I have to watch what I eat for the rest of the day, as it is likely to make me feel ill no matter how hard I try to avoid my "trigger" ingredients. Triggers are the things that guarantee I will have a bad reaction to something, even on the loveliest of "Good Smell Days".  These include, but are not limited to:

Coffee: 

Put simply, the smell of coffee is the worst thing in the world. On a good smell day it might take on the character of burnt, but still strangely sharp garlic, with just a hint of sewage beneath.  On a bad smell day, coffee, even coffee on the other side of the office smells like something died in a sewage plant then was allowed to get damp and mouldy then used as a growbag for onions.  Most days, it's somewhere in between.

Cigarette smoke: 

I was never a smoker before, and I have always hated the smell of cigarette smoke (not good old rich pipe or cigar smoke though), associating it with ill-health and anxiety from a series of lung-related traumas in relatives of all ages when I was a child.  Now, however, the smell of cigarette smoke is sharp and acrid, not smoky at all, but chemical and offensive.  Again, however, with that irritating top note of strangely shrill garlic. Walking down a street filled with smokers who have been forced into the great outdoors can feel like being repeatedly like being punched in the face with a chemical-smeared boxing glove.

Oddly, I can only tell the difference between cigarettes and coffee once I can put the smells into context.  If I'm walking past a coffee shop, I'll know "my smell" (from this point onwards to be referred to as "The Honk") is most likely to be coffee.  If I'm walking past a pub, however, it'll be cigarettes.  If you were to stand behind me, with either a fag or a cup of hot coffee, the only thing I'd be able to register would be "The Honk", and not which "trigger" you were holding.  "The Honk", whilst it varies in intensity, and occasionally in form, is always just "The Honk".  Being able to recognise the ingredients that cause "The Honk" to come into being is an ability that has been taken away from me right now.

In a further oddity, smoked fish, cheese and ham are fine.  Well, not "fine", but fine in that they generally aren't "triggers".  Go you, stupid nose!

Bacon:

The day I realised I could no longer tolerate bacon was not a good day.  The smell of bacon frying is one of the greatest pleasures on earth (sorry, any passing people of a vegetarian persuasion, but it is). It's a sign that, no matter how bad your life is, how bad your day has been, at least there is going to be bacon in it. Bacon is a Good Thing. I love bacon.  Well, I did. 

I cried the day I "lost" bacon.  I cried hard, and I cried long.  I cried the way Adrian Mole did after the wind blew away his candyfloss in Cleethorpes.  It was not a good day. Even now, if I need to fake-cry, I think about the day I "lost" bacon.   Halloumi goes some way to making up for this loss, but frankly, it is NOT the same, and never will be.  RIP bacon.

Chocolate: 

Forgive me, but this will be both graphic, and disgusting.  Chocolate is, essentially, like chewing on a turd. You were warned, and I am sorry, but that is what it is like.  Unless it is white chocolate, that is, in which case it is like chewing on sugary lard.  Actually, that reminds me, they need to bring back White Chocolate Maltesers.  Malty lard for the win! 

Peanuts and Marmite:

See chocolate (above).  But, you know, savoury.  Peanut butter, I don't even want to think about.  I used to quite happily, as a child, sit and slowly suck all the marmite off a teaspoon.  Yes, it's fairly safe to think that I won't be doing that again any time soon.

Roast potatoes: 

I love(d) to cook.  I'm famous in several places (okay, three, but three is definitely several.  You can trust me, I am an accountant) for my roast potatoes.  I make them big, and crunchy and fluffy all at the same time, and now, to me, they taste like they are rotten.  Big, crunchy, fluffy rotten spuds.  all watery, covered in mould, and having grown roots worse than Tina Turner's frightwig. 

This also applies to crips and chips, and any other kind of fried potato.  I am Northern.  I am basically made of potato.  I miss potato.  Yes, I can still eat boiled potato.  But who wants to eat boring old boiled potato?  I suspect I could probably still eat mash, but as my husband obstinately objects to mash on idealogical grounds (no, I don't know why I married him either) mash is a forbidden substance in the Lippie household, and has been for a very long time now.

Gravy:

Did I mention that I'm Northern and essentially made of potato?  What goes better with potato than gravy?  Or, in my case, liquid sludge (see chocolate).  My nose hates me, and wants me to die.

Toothpaste:

I lack the words to tell you how bad minty toothpaste is.  It's bad.  It's really, really bad, and you seriously have no idea how bad it can be to find out that brushing your teeth to get rid of the taste of something that has made you feel sick is only going to make things worse. A lot worse.  Imagine if brushing your teeth every day made you vomit, and you still had to do it twice a day with the stuff that makes you vomit. That's about a tenth as bad as it actually is.  It's not good, and it gets worse because non-minty toothpastes are impossible to find.  I'd sell my left leg for a decent cinnamon toothpaste that I don't have to import from the US (and contains fluoride) right now.  I'm not even slightly joking.  Left leg, it was nice knowing you, but we're done. I need my teeth, dude.

Wine

Yes.  Wine. I'll be damned if I'm giving this up though. I have a theory - as yet largely untested because I can't seem to be able to read my handwriting after recent experiments for some reason - that it is oaked wines that are the worst for The Honk.  I'll keep you (and me, hopefully) posted. 

In the meantime, I'll drink gin instead.  I can't thank the gods of whatever religion you care to name enough that beautiful, spicy-cool, junipery, cardamom-y, soapy-coriander-y gin and refreshingly crisp and bitter quinine-ridden tonic water are, largely untouched by The Honk.  I am going to a gin festival in February, and I am planning on drinking ALL the gin.  Don't even bother buying a ticket for yourself, because all your gin are belong to me. Don't say you weren't warned.  Vodka tastes like cold sick, however, and you are welcome to it.  That isn't The Honk though, I just don't like vodka.


A good smell day is ones where these "triggers" will just make me feel a bit sick.  A bad smell day will make me puke on contact with any of them.  I can turn a bad smell day into a good smell day by avoiding all of these triggers (which essentially boils down to not leaving the house, and eating only non-scented white foods), but it's damn near impossible to avoid all of these smells - or tastes - every single day.

A bad smell day is one where the decision of what to have for lunch (I don't tend to eat breakfast with any kind of regularity) can make me cry.  Where the two minute journey to the supermarket (with the smokers in the street and the diesel fumes to contend with) to buy lunch can make me cry.  Where making the decision of what to buy IN the supermarket can lead to a frenzy of "will I be able to eat this? I DON'T KNOW!" conversations with myself can make me cry.  Where just the ambient smell of a supermarket will make me ill.  And cry.

Then there's the utter sucker punch of getting two bites into whatever (probably bland as heck) thing you eventually grabbed off the shelf in your hurry to leave the place and it makes you sick. You might not cry, but you'll definitely still be hungry.

An unthinking colleague in the office might put a cup of coffee on your desk and you'll have to move it away, explaining your "condition" once again, and you'll see people thinking you're either just just plain crazy, or pregnant and lying about it.   Hot soup in an office, by the way, eaten at your desk should be an offence punishable by hanging you up by your nostrils till you promise not to pollute the working environment with Eau de Honk ever again.

On bad smell days, ones where The Honk is strong, I worry sometimes that this will never go away, and I'll never be able to either eat normally again, or to be able to socialise properly ever again.  If someone in the office is wearing a perfume too strong, or has spent a little too long hanging with the smokers in their Siberia outside the building, that can ruin my whole day on a bad smell day. I won't be too happy about it on a good smell day, either, mind.  Being invited out for a meal is stressful, as I won't know in advance what I can or can't eat on any given day. And if the restaurant is a smelly one (a steakhouse with a smokey grill, say), then I'm just going to be uncomfortable no matter what my nose dictated I was going to have that morning, regardless.

The quality of my days is no longer predictable, and is entirely dictated by the whims of my peculiar and infuriating nose.  My parosmia has caused me to lose some of the control of my life in a baffling and surreal way, and sometimes, I struggle.  It's frustrating, and annoying, and most of all it's BLOODY STUPID.  And that in itself is frustrating and annoying and ... well. I'm sure you get the picture.

That said, I have come up with some quick-fixes, and I'll talk about those in another post: "How to survive a day with Parosmia".