Thursday, 3 December 2015

Don't tell me to wake up and smell the coffee

Believe me, I would if I could.

I would have liked to steal a title for this post from a British woman who started a blog called the Parosmia Diaries with a post titled "I smell funny.  No, really, I smell funny."  But stealing is bad.  And she abandoned the blog without ever saying if her parosmia improved, so I'm kinda pissed at her anyway.

But you don't even know what parosmia is yet.  I didn't either, until September.  In May, I had one of the worst colds of my life.  It lasted the entire month and induced anosmia.  I'd heard of people losing their sense of smell – and, therefore, taste – from a cold, but it had never happened to me before.  It was heartbreaking and frustrating to miss my beloved lilacs this year but, initially, I wasn't too alarmed as this seemed to be a fairly common phenomenon that resolved itself within a few months.  Indeed, my sense of smell/taste improved steadily over the summer.  Everything smelled and tasted normal, albeit weaker.  But it was getting progressively better so I didn't give it much thought.

In August, I suffered an unspeakable trauma in my personal life and forgot about smelling or tasting – or sleeping or indeed anything else; I was completely shattered.  Evidently, I must have eaten enough to stay alive, but I certainly wasn't paying attention to how it smelled and tasted.  The combination of emotional upset and lack of food gave me acid reflux, also for the first time.  I didn't have any of the usual symptoms, just a persistent cough that was the result of aspirating stomach acid.  I don't like to take meds but, as a singer, I was alarmed at the possibility of damage from this and so treated the reflux.  The cough went away.  But all was not well.

One day in September, I noticed a burning smell with a sour undertone in the office kitchen.  I didn't pay it much heed but it was back the next day.  And the same smell wafted over the bike path as I rode home.  And hit me when I went in Whole Foods or past Starbucks.  And my food all seemed to have that same burnt/sour taste.  I thought it was in the air, maybe a plant processing some type of grain had caught fire.  I was tempted to ask if other people could smell it, but I sussed that it was just me and that everything had just this one smell.  It didn't matter if it was a flower or horse manure or petrol.  Literally everything on earth had this one scent, or no scent at all.  Nothing smelled normal anymore and it seemed to happen overnight.  Gradually, the burnt aspect of the smell diminished and the sour become predominant.  It's a rotten-sour smell and it is noxious.

Of course, I did research.  I discovered parosmia.  It can be caused by head trauma or brain tumour but more often it's from a bad cold or sinus infection damaging the delicate olfactory nerves.  I also found out that it's permanent in about 70% of cases, with a lucky 30% noticing some degree of improvement in 1-2 years.  If there's no improvement within 2 years, it's safe to assume you are stuck that way for life.  I joined online support groups, read clinical studies, spoke to ENTs.  I have yet to hear of anyone who has recovered 100% of their previous sense of smell/taste.

I consulted a local ENT who recommended an MRI to rule out other causes.  The presentation of my parosmia – smell recovering normally and then suddenly one day it all goes wonky – is atypical.  As near as she can figure, the olfactory nerves that were damaged from the cold in May were healing nicely over the summer but the trauma, and possibly stomach acid, damaged them.  Initially, I declined the MRI because my insurance has a $1K deductible and then covers only 80%, so I'd be facing an impossible bill.  But my curiosity got the better of me.  Blue Cross can blow me – you can't get blood from a stone.  The brain MRI (which I heartily do not recommend to anyone not curious about what it's like to be entombed – trust me, even if you have never suffered from claustrophobia in your life, you will not be a happy camper) showed no other possible cause.  I suppose it's nice to know one doesn't have a brain tumour, but neither did it provide any hope or comfort.  The nerves will either grow back in 1-2 years or, much more likely, they won't.

If I hadn't been in the midst of the worst crisis of my life, I would have freaked out a lot more about this already.  But now that the holiday season is approaching, I am starting to get pretty upset about it.  I've already missed Halloween and Thanksgiving and all the autumn-in-New-England specialties.  I live for Xmas scents and foods, for holiday baking.  I've been frantic to find a cure, but there isn't one.  There is a great deal of research into motor neuron regeneration but none into sensory nerve regeneration.  The latter is considered a lifestyle rather than a health issue.  That isn't true – a parosmiac cannot tell if there is a gas leak at home, a burning smell in the car, or if food has gone off.  Some find that all food has too noxious a taste to be able to choke anything down and they must be tube fed or have surgery to induce permanent anosmia.  And the lifestyle effects can lead to depression and isolation.  It's not only food odours that smell bad – everything has the same scent – but our social lives revolve around food.  Many parosmiacs can't go to restaurants, grocery stores, or other places that feature food smells, like movie theatres or fairs.  They can't sit at the table whilst their family enjoys a meal – the smell is simply too gag-inducing.

And the social effects go beyond food.  Although I don't think I ever smelled bad, I have become paranoid about not being able to tell. I take two showers a day, use tons of deodorant, and continually change clothes, just to be sure.  The only scent I wear is lilac and I just had to switch brands.  It is weird putting on scent that smells foul to me, trusting that it smells good to other people.  I have been tempted to hold my wrist out and ask random people, "Does this smell like lilac to you?"

So what do I eat?  Luckily, everything doesn't have the same intensity of the noxious smell/taste (NST).  Most fruit doesn't have any scent or taste at all.  I can identify it by texture, but not by smell or taste.  The tongue can detect sweet, salty, bitter, and sour, so I can still tell if I am eating a sweet or savoury food, even though I cannot determine its flavour.  I can drink wine (thank fucking goodness), but no point in wasting money on anything better than Two Buck Chuck.  I can identify my very favourite food, ice cream, from its texture, temperature, and sweetness, but I could not tell you the flavour.  If I am craving salt, I can eat crisps, but only plain ones.  I rely a lot on visual and texture cues to appreciate food, but they are a poor substitute for flavour.

Eating is trial and error.  I have tried to stick to foods I normally love, but some are just too vile now.  The NST varies greatly between foods.  It's safest to eat one food at a time, unadorned.  The more flavours that are mixed together, the more likely the NST will make eating it impossible or at least unpleasant.  The worst foods for the NST are eggs, coffee, and chocolate.  Since I am broke and have chickens, eggs are a mainstay of my diet.  I simply eat them anyway.  I have become quite adept at buying healthy foods, like kale and broccoli, and choking them down plain, because they are good for me.  Strangely, dairy is not particularly noxious.  It tastes vaguely sweet, without any identifiable flavor.  So, I still eat cheese.  I live for eggnog at Xmas, but can't get its true flavour (or beloved spices like cinnamon and nutmeg and cloves and cardamon), just that vague sweetness, which is disappointing but at least palatable.  I can no longer drink black coffee, but I am going to try an eggnog latte, a holiday favourite I hope I can sort of appreciate this year.

I am stubborn.  I had 3 pumpkin spice lattes this fall before I admitted I could not taste them.  I keep trying chocolate, even though it is particularly noxious. I simply can't admit to myself that I can't enjoy it anymore.  It's retarded, I know, but I can be literally gagging and forcing myself to eat a chocolate chip cookie because I will not admit that I can't enjoy food anymore.

What do I miss the most?  COFFEE, chocolate, and garlic.  And I miss being able to smell horses.  I miss variety in the world.  Someone said to me that at least I can't smell gross public bathrooms or skunks.  Believe me, it would be well worth it to suffer the bad smells to be able to enjoy the good ones.  One friend quipped that she'd love to be able to get it so she could lose weight.  It reminded me of how I used to joke, at 16, that I'd like to get anorexia for about 6 months.  No, you wouldn't want a serious eating disorder just to be able to drop a few pounds, and nor would you want this.

Don't get me wrong:  I am not feeling sorry for myself, nor am I equating parosmia with, say, a cancer diagnosis or the life of a Syrian refugee.  I'm just explaining why I might not eat much if I go out to dinner with you or send as many baked goods this holiday season.

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