Referral / The Smell of Snow

I've decided to try and update this blog once a week, rather than just spasmodically when I remember to. I do really want this to sort of be a 'thing' and it feels really good for me to have somewhere to be self indulgent about my anosmia. People are choosing to read this, rather than forcibly being polite as I try to talk to them about it. I know some people have signed up for email updates of when I post a new blog, but this doesn't seem to be working. I don't know why. But from now on, I'm going to write a new post every Friday!

So, on with the self indulgence!

I'm going to start this entry off on an extreme positive note: I finally got my referral to Spire Hospital!

This has made me ridiculously happy. This means that I'm (hopefully) going to get to see the only doctor in the country that can restore me sense of smell. I know it's silly to get this emotional I don't even have an appointment, but it's a start. It's a start of finding out a cause and the possibility of treatment. I almost danced the corridor of the medical centre. The doctor said that it would take another couple of weeks before I hear about an appointment from Spire, but I don't even care. Now I just have to wait to here from Spire Hospital, which will hopefully be them telling me when my appointment is. I really needed this boost this week. I had a bit of a drunken melt down at the beginning of the week, where I decided that because I was anosmic I was going to live a rubbish life, never get married, never have children and die alone surrounded by cats that would probably die when I forgot to feed them and I wouldn't notice as I wouldn't be able to smell their decaying corpses.

On another note, it's been ridiculously snowy in Norwich at the moment. On the day that it first started snowing, someone said to me "It smells like snow". I find that really weird. I can understand that food and people and things that are designed to smell can have a distinctive smell, or that the scent of something can be associated with a particular weather (for example suntan lotion), but does snow actually smell?! I'd greatly appreciate it if someone got back to me on this.

I've been much better at eating properly this week as well, as we've eaten a lot of meals together as a house, at proper times at a proper table. This means that I'm not just snacking when I feel hungry, but I'm actually giving my body what it needs before it has to tell me, which is much healthier!

All in all, this hasn't been a bad week for anosmia. Lots of people have colds at the moment and I know it makes me a terrible person, but I can't help but be a little gleeful that they're getting a vague experience of how awful it is to not be able to smell or taste properly... Please still be my friend?

Further Reading... For The Doctor

This has actually been a really hard blog entry to write and I've deleted it entirely about three times. As some of you may remember from my first post, I mentioned that I had an appointment at my university medical centre on Wednesday 10th; for a referral to the only clinic in the UK that has the resources to treat anosmia. There's two parts as to why this turned out to be one the worst doctor's appointments I've ever had. One is that I won't get the referral for at least another 4 weeks as they've lost all my medical records before I came to university. The other is more sad. I'm used to having to explain to doctors before just what having ansomia means, but never to one who then tells me that her 15 year old son also doesn't have a sense of smell. I thought that would have been one doctor who would at least know a bit more about it; not ask me to bring in some reading on it for her.

I guess that just proves how so many people just write anosmia off because it isn't something that's obviously physically wrong with someone.

Since this appointment, after having made a number of phone calls it's transpired that the medical centre actually does have my previous medical records and a new appointment has been made for this upcoming Wednesday. Although they could have made the referral to the specialist anosmic clinic without another appointment, I felt that it was important to see the doctor again. She'd asked to see some of the reading that I'd found on ansomia at my last appointment. This includes the newspaper article on the anosmia clinic, the BBC article, some information that the NHS provides and various other bits and pieces. She might never actually read it she might just have been trying to be polite. But if we don't take opportunities like this, then nothing is ever going to change in the recognition of the severity of this disability. This doctor seems like a good place to start, especially as her own child possibly is anosmic.

So angry and disappointed it's not even true. 

The Hunger Games

The most common question that I get asked after I tell someone that I don't have a sense of smell is always "Does that mean you can't taste either?". Your sense of smell and taste are closely linked, but it's not always so simple as that when you lose one, the other goes as well. In this post I want to try and explain this a bit better and that this doesn't mean that I have inhuman resistance to curry powder.

80% of flavour comes from our sense of smell, so obviously an anosmic's experience of food is greatly reduced. Anosmics retain a normal sense of taste however, so we can still distinguish between sweet, sour, salt, bitter and savoury like everyone else that can smell. But due to the fact that we can barely distinguish between flavours we have to rely more heavily on other things such as the texture, acidity and dryness of food to compensate.

Personally, this is enough for me. My anosmia effects my relationship with food in another  way; I repeatedly forget to eat. Most people become hungry from smelling something tasty, or simply something that reminds them of food. As I don't get this, I just don't get hungry until the point where my stomach starts grumbling painfully, which usually happens when I'm stuck in a 3 hour lecture. 

Now that I'm a 'grown up' snf cooking all my own food means that I have to be especially aware of use-by dates and raw meat and fish. As soon as milk goes past it's best-before date I throw it out, even if it's still good. If I cook something that requires the use of an oven, I make camp in the kitchen just in case something sets fire, as I would be unaware of the smoke until it's too late. Luckily, I've never been unfortunate to suffer from food that has gone off despite being within it's use-by dates.

The Time When I Almost Drank Nail Varnish Remover

Drinking nail varnish remover smells. And it can kill you to drink it.

One of my modules at university is called 'Political Theatre' and for our first class we had to do a 'political act'. This could be whatever you wanted; there were no rules. I literally spent weeks trying to think of something to do. I've not got a lot of knowledge about politics and struggled to think of something original. Eventually I decided that politics related to something that someone believes strongly enough in. Strongly enough to put their life on the line for the beliefs. 

I got three plastic cups and filled one with water, one with straight vodka and the last with nail varnish remover. I put red food colouring in each so that they all looked the same; the only way to tell them apart was to smell them. You see where this is going?

When it came to my turn to perform my political act, I put the three cups on a chair in the middle of the room and asked for three volunteers. Specifically ones that could smell. I told them that one cup contained water and was safe to drink. The others had vodka and nail varnish remover in. I then announced that I would drink whichever one they told me to.

The reaction from the rest of the class at this was better than anything I could ever have hoped for. There was an audible gasp, with one American student distinctly saying "Oh my God". My point was that as an anosmic, I cannot smell the difference between these three liquids. I won't know what it is until it's actually on my tongue and too late. I purposefully picked nail varnish remover and vodka for this demonstration as I know that both of them have an extremely strong smell; they're also both extremely bad for you, to the extent where consuming one of them would most likely kill you. I wanted to shock my peers and tell them just how dangerous living with ansomia can be, which I think I did. 

(Luckily, they did pick the cup with the water in)

Anosmia!

If you had to lose any of your five senses I would agree that your sense of smell is probably the best one to go. I lost mine when I was about three years old and so I never really had the awareness to appreciate it. Despite it being the 'best' one to miss, I can tell you now that you are already taking it for granted. We appreciate being able to see and being able to hear, without a second thought really being given to our sense of smell and indeed our sense of taste. I wanted to start this blog to raise awareness of being anosmic - not having a sense of smell. You can see and hear the world, but you can never really interact with it. It really is like living through a pane of glass.

It is estimated that 200,000 Britons are ansomic, with another 5,000 being born with the disability. This may sound like a lot to you, until you realise that there are only two doctors in the whole of Europe who are able to treat it; one here in the UK and one in Germany. This treatment has also only occured in the last year and already the only hospital in the UK is turning away patients. Going privately will cost £500 for the first consultation and even that has a 3 month waiting list.

For many people without anosmia they see it as either something unbelievable or a blessing. I have frequently been met with cries of "But surely you must be able to smell this?!" or told how lucky I am in cases of festival toilets. But your sense of smell is your strongest link to memory, relationships and food. Over 50% of people with anosmia suffer from depression. We are unable to form emotional links with important moments in our life simply because we are lacking the strongest subconscious relation to them. Primitive instinct dictates that the way a person smells to us plays a huge part in forming lasting intimate relationships, whether in a partner or close friends, again because of this emotional link. Our desire to eat comes from smelling food; as an anosmic I simply know it's time to eat when my stomach becomes a gnawing inner pain. I frequently drink more alcohol than my body can handle as I cannot smell how strong the drink is before it's too late.

In many cases, ansomics know more about their condition than many medical professionals. I've had blind smells tests, my inner nose examined with an endoscope, a CT scan and have tried many nasal sprays. After being told that there was nothing that could be done medically to retrieve my sense of smell I tried alternatives such as craniosacral therapy and accupuncture all to no avail. I have since also had surgery at the Spire Hospital Norwich, which has also proved unsuccessful.

More information on anosmia can be found on the Fifth Sense organisation here, with links to the BBC article on it here, which even if you read nothing else on this blog, please read that.

I appreciate that this post has been rather long and dull, but I plan to update this blog with more light hearted anecdotes about living an odourless life. I hope that you'll follow it and appreciate it and wish me luck in my journey to getting all five senses back!