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".

10 comments:

  1. It sounds horrifying.

    And also very confusing and scary. I don't have any answers but I hope you have a better day tomorrow

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  2. Almost makes me happy to be anosmic. Food is simpler with just the basic tastes. Bitter is out. Strong flavors are out. Eating is a necessary evil, but at least there's no confusion. Look for the parosmia message boards. I find talking with other anosmics makes it easier for me when olfies cannot understand.

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  3. I've had almost no sense of smell my entire life, so don't really miss it. Still, I grow roses and like perfume. I just have to wait for the occasional moment when my nose works. I found, by accident, that the diet pill phentermine gave me a better sense of smell. I also wonder if your condition may be caused by a microscopic parasitic infection around your olfactory nerve. You may not be aware of it, but many places now do aerial spraying of insecticides that contain modern genetically created microorganisms (and their effect on human health has yet to be understood). Additionally, baking soda and salt can kill a lot of bad microorganisms, easing your condition. Also, just avoiding the new types of fluorides in toothpaste gives your nose a chance to develop a better immune response. Lastly, don't get one of those new 3-D retinal eye scans that are being called harmless by eye doctors. Otherwise, like many people I know, you could lose part of your vision permanently (and be told it is just your imagination).

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  4. I'm happy to have found you, and unhappy to be suffering from this as well over the last few months. Mine also started from the worst "cold" of my life, initially was anosmia for 2 months and now for the last 2 is parosmia. I'm still doing the ENT dance--had the CT scan, having an MRI in a few days, all tests that will show nothing. After that I suppose it will be Neurology to rule out Parkinson's and other horrors. In the meantime I have been relatively housebound: grocery stores are only accessible late in the day after the deli's and coffee shops attached hve closed, restaurants are not even possible and cafe's...well. You covered coffee smells perfectly. Even just walking the dog is fraught with disaster, as Diesel engines and fertilized yards can cause my stomach to clench up and spew. It's just nice to know I'm not alone both in my unhappiness and my hope that this must someday go away and I will once more know bacon and all cooked meats again!

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  6. Thank you for your blog, you describe these nasty smells so much better than I can! I have the same problems with coffee, red wine, cigarettes, exhaust, and meats. Today I got the smell from mowing grass, which is referenced by BookGirl. I also get it from cooked eggs and darker beers. I think the condition could be a result from being really sick in late May. Afterwards I had a persistent light chest cold for a month or two, which went away but then the parosmia appeared. I've been doing upside down salt water nasal rinses in the shower, but they haven't helped yet. I'm hoping the condition is due to damaged nasal receptors from being sick, which will regenerate in time. Who knows? Apparently nobody. Meanwhile I'll be drinking Chai tea and gin.

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  7. I've been suffering for several months as well. Bronchitis in April led to anosmia for two months. During that time I was exposed to an unhealthy dose of bleach cleaning an unventilated bathroom (because I couldn't smell it!) That's when parosmia took over. I only have one smell. I call it "the bad smell" which I can only describe as a chemical like combination of tin foil and spoiled milk. Everything with a strong fragrance has this smell.. coffee, dog poop, my shampoo to name only a few. Strangely, sugar is immune.. which is not good for my diet.
    I'm desperately searching the web for help, guidance, or even a time frame on the duration of this hell.. hoping it won't be permanent.

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    1. Hi I just read your blog n I am going through the same thing. My ENT put me on gabapetin to try n send my brain messages that may eventually help me identify smells for what they are. This is a horrible condition and I had it for 8 years. I just started the gabapetin about a year ago and I am told it is a medicine that has to be increased over time. Also they had me try a nasal spray to reduce the bad smells called theophylline. Insurance doesn't cover it n it is $60 a bottle but it lasts more than a month. I had to stop taking it because it made my migraines worse but maybe it will work for someone who isn't so prone to headaches. I hope this helped n I wish u the best

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  8. I have been suffering from parosmia for about 8 years. It started after I had a severe upper respiratory infection and I lost my sense of smell completely and when it started coming back it was never the same. The smell of fried chicken was horrible to me as well as every other good smelling food but that improved a little bit over the years. The number one thing that makes me literally run away from is perfume, cologne and all other fragrances. With parosmia it doesn't smell at all to me what it really is, its more like a strong stinking chemical smell that goes straight up my nose and gives me a migraine instantly. It's impossible to avoid those smells because it's everywhere. I have gotten off of buses due to people wearing, have to hold my breath when I go shopping and even got into many many arguments with almost 80% of the people at my job. Nobody understands this problem like they think I'm crazy but it's not my fault and I am relieved to know that there are many people who are going through the same thing so I am not alone. I had an ENT tell me one time can I just live with it!!! I wanted to punch him in his face like u couldn't believe he said that because wow he has no idea.I now see a much better Dr. n he is very understanding to my condition. He prescribed me gabapetin 900mg a day n on a couple occasions I actually was able to get a very slight whiff of fragrance for what I really smelled like and u also noticed I wasn't running off buses as much but then I caught a bad cold and everything started stinking more then ever. My Dr. just started me on 1500mg a day so hopefully it will be beneficial. It is a very frustrating condition especially when all the ct scans n mri's are normal. Thank God family n some friends are understanding n they will not use perfume around me but when your in a restaurant or store or work forget it u just can't get away. My boyfriend told me I have to watch how I say things in public because it might get me in trouble but when someone has all that perfume or cologne I just can't help myself to say get the hell away from me with all that perfume. So good luck to everybody who is going through this problem n I wish yall the best

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  9. I have been suffering since July, that's as far back as I can go. I too really struggle with food and it becomes an obsession. Some days are better than others as you say but the food issue is getting me down. I have two differences to you, I can eat chocolate and use normal toothpaste, everything else is the same sewage. Today is a bad day, bad taste in the mouth all day but I find sour chews help. People do not understand, my sister thinks it's all in my mind, I wish. It is now coming up to Christmas season and I am dreading it. I have also found covering food with sweet chilli sauce is the only way to eat food and I carry a bottle with me. What do you eat. I found rice pudding mashed potatoes and peas, mostly are ok, the rest are like trying to eat sewage. It has been good to read your blog.

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