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.


  1. I don't know you, but, I would like to encourage you not to be so hard on yourself for losing it every now then. Having a chronic illness is hard. I have phantosmia among other things.

    You're right about the grief cycles. I have had a lot of practice with grief from having a severely disabled 29 year old daughter. Grief can be tiring, and like an unwelcome houseguest sometimes. When I don't grieve effectively I get depressed. Bouts of grief pass quicker for me if I don't try to run from it and acknowledge my pain. Sometimes I have to verbalize (yep, I talk to myself) "I'm so sad, I never imagined my like would be like this. This hurts." Depression always fools us into thinking things will always be bad, but it is simply not true.

    It sounds like you're an artist too. If you can't paint right now, can you draw? Creativity has been therapeutic for me.

    I am sorry, I don't usually give advice. Your post got to me. I just want you to know you won't always feel this way. You will figure out your own best way to cope. You are obviously very smart. Please be kind to yourself, you're worth it.

  2. I am so glad I have stumbled upon this! I'm 24 and have genuinely thought I've been going insane; is wasn't until a couple of months ago that I got diagnosed with parosmia... And can I just say it is bloody weird! Just plain weird! I've been told it's due to a bout of the flu I had a few months prior to my diagnoses . At first the smells where really getting me down, for example the smell of cigarettes would be as if a cat was pissing right under my nose. I found it a very difficult condition to describe to people and usually they say the same as me 'thats just bloody weird' but as time as gone on I'm learning to cope with the distortion, and at times, even find it ridiculous myself . Your are so right when you say the bathroom is never boring; steam smells like burning which still often rings alarm bells as I convince myself the house is on fire. Oddly, also, my own sweat has the most bizarre smell, which I can only describe as melting plastic! Anyway, even though I'm a couple of years late reading your diary I am very happy that I have . There is something so powerful about sharing your experience with others and making them feel less isolated even though it's words on a page I really feel better in myself , so thank you!

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  4. Had it for about 3 weeks now. Bloody irritating. It came on after a bout of flu. First it was car fumes for around 4 days then it went to cigerette smoke. It's quite overwhelming at times and has brought on insomnia now as i wake up and smell it and it distracts me from dozing back off. Never experienced anything like it before.

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