Anosmia Awareness Day (again)

I know it's been a while since I last posted here. I thought I didn't need to. I thought I was kinda getting over the whole anosmia thing. If anyone cares to read my previous entries, you'll know that I used to have such big plans; I wanted to create an actual website, I wanted to create a safe space for young people to be able to share their experiences and provide support for each other. To raise awareness an to educate themselves and others in an environment that was completely theirs. But it became exhausting, there was so much negativity to creating a space with a targeted age group (mostly from the sort of people that proved my point as to why younger people needed specialised support) and so I took a break.

But then this day comes around again, and I find that I'm no longer upset by not having a sense of smell, I'm just angry.

I'm so angry that it gets overlooked on a daily basis. I'm so angry that when I try to tell people how it affects my relationships, I get messages questioning if anything was ever genuine. I'm angry that I'm working at a job where I get asked to taste food in front of people for their own amusement and curiosity, like some sort of freak show.

So today is anosmia awareness day. You're supposed to wear red to show your support of it (I don't know why). But it's a small gesture and even if it's by complete accident, if I see anyone wearing red today I'll feel a little better. Maybe that's the idea? It's like some secret code, letting anosmics know that they're not alone. That they don't have to be angry. That it's getting better.

Smelling Drama

So it's now been over a year since I got the news that my surgery had been unsuccessful and that was it; I was never going to able to smell again. I remember this because that was also the day before I decided that I was going to get my nose pierced (it might as well serve some decorative function on my face it wasn't going to prove a useful one). I'm now at drama school and my nose piercing has healed up as I've had to removed it for classes; yet my anosmia seems to be more present than ever as a lot of our training concentrates on the senses. "You must breathe in the flowers" to give you the impulse to do your vocal warm up, "you should remember a smell that means something to you" to form an emotional connected, "you need to know what the room smells like" to really connect with it.

On one hand, I'm really angry about this. And I HATE that I am; but no one else can be for me. This time last year I was SO excited that I was finally going to be able smell Christmas: the tree, the food, the mulled wine... Maybe that's why the visual/audio elements of Christmas means so much to me? Going to see the lights in London and the window displays, the John Lewis advert, the music and our always wonderfully mismatched and overloaded tree at home.

It has recently been suggested that I have developed a social anxiety issue because of my lack of a sense of smell (which is not surprising as 80% of anosmics also suffer from depression). I am needy and require constant validation of affection because I cannot form connections on a subconscious level due to a lack of being to smell pheromones or remember or know people apart from what they look or sound like. And I'm trying so hard, but I still feel so alone and so isolated. Everyone here is so lovely and they remember it so well, but I really don't want them to feel like it's an issue and they can't mention smells around me. But also, no, I really cannot smell how awful your fridge is, and it's not 'weird' or 'strange'. Please don't feel sorry for me, please get angry for me. Get angry that you maybe didn't know that anosmia existed, or that you knew how much of an issue it really is for people... I'm sorry, I know it's a really weird in-between place. 

It may well be because I'm no longer in Norwich and stand no chance of ever getting another smell test again with Mr Philpott. I don't even get to hope anymore that I'm going to get it fixed. 

On the other hand, I just really wanted to be able to smell Christmas.

The Great British Scent Off

I am a HUGE fan of The Great British Bake Off. I seriously don't think I could ever possibly love a show more than I do this one. For those of my readers who live outside the UK, it's a competitive baking programme, set in a tent in the countryside with lots of pastel colours and bunting and we all take it very seriously as a nation. So seriously in fact, that when it looked like one of the contestants Baked Alaska pudding was sabotaged by someone else taking it out the freezer, there was a national outcry. Twitter went crazy, hashtags were trending demanding justice for the bloke who had been sent home because he threw his melted creation in the bin because he didn't want to bring it before the judges in its puddled state.

(I have an anosmic point I swear)

Then it turned out that the woman whom we had all seen take his creation out of the freezer to make room for her own, had dropped out of the show due to illness. So that was what justice felt like! This WI witch had got all that she deserved was the popular opinion, and did this mean that we could bring the poor other bloke back? I'm not going to lie, I had a small moment of glee, but we all love the underdog, don't we? Then I discovered what her illness actually was. She'd fallen over in a restaurant and hit her head and lost her sense of taste and smell. 

(I told you)

Now, as upset as I was about Baked Alaska-gate, I would never wish anosmia upon anyone ever. Especially someone whose love of baking was enough to get them onto a televised national competition. To then not be able to smell or taste your creations, must be absolute devastating. For my part, I became anosmic when I was far too young to be able to operate an oven and I've grown up with it. But to have been able to smell and taste perfectly fine all of your life, and then to have it taken away from you in some out of the blue accident... I cannot even begin to imagine. However, I also saw that there was some upside to this scenario. The Great British Bake Off is broadcast on prime time television, on the BBC. Surely they would have to announce why a contestant had suddenly left and what had happened to her and how awful it was and what it was called and it would raise awareness what an impact anosmia has one people? Surely?

No.

I was furious. They simply said it was due to illness, and on the spin off show a few days later where the poor woman was invited for an interview, again, nothing. I had sent emails and tweets to the programme, the producers, the BBC, asking them - no begging them - to mention anosmia and how awful it was and they just... nothing. If she had gone blind or deaf or been horribly burnt, then it would have made the headlines, it would have made national news and people would be talking about it all over the country. But if you lose your sense of smell, you get a small article written about you on their website and it's not even spoken about to your face. And the poor dear looked terrified, you could obviously tell that something awful had happened to her.  This is a horrific case and point about how bad the awareness of this disability is and it just makes me so angry.

If anyone is interested, here is the article: http://www.theguardian.com/tv-and-radio/2014/aug/28/diana-beard-quit-bake-off-smell-taste

Home alone

For the first time in my life, I have been left alone and in charge of an actual proper house for two weeks. I like to think that being a responsible 'grown up' isn't something that I'm new too, having lived away from my parents for most of four years, but I've generally lived with people. Being by myself really doesn't bother me, and I've actually quite enjoyed the freedom of having my own place; it's reassuring to know that I could manage my own flat in London somewhere in the not so distant future. However, it has made me more aware than usual of my anosmia. I think living alone when you don't have a sense of smell is actually pretty terrifying, especially when you've grown up with it like have, as you have no idea what stuff is supposed to smell like to know if it's okay. Normally, I would ask my housemates to smell food that was out of date (just to make sure), or I rely on their reactions if anything around the house smells bad. I've also been doing a lot of physical exercise every day (as I'm doing a stage combat course) which has meant a definite increase in showers and washing clothes, just in case. I'm suddenly very paranoid about the fact that we have a gas cooker, especially as the other day I tried to light it and nothing visible happened (it turned out that actually we'd run out of gas money, but nevermind).

A lot of things seem might seem fairly trivial to the working noses out there, and I'm sure they are to a lot of people. However, these are things that I'm constantly having to be aware of and will always have to be for the rest of my life. Which is a bit rubbish, really. I'd quite like to be able to relax when I'm cooking or opening my fridge door; or to be able to smell the flowers I bought for my little student room to cheer it up a bit. I don't mean to moan, and I'm desperately trying not to sound like I'm complaining, because I'm not. I've resigned myself to it now. As ever, I just want to raise awareness and understanding for what life is like for someone like me.

Whilst you're here, I'd also like to direct your attention in the direction of Olfaction Collective. They are aiming to use art to create awareness of anosmia, by collaborating with artists and sufferers alike, and try to make it much less of an invisible disability. A few weeks ago I met a brilliant young woman who is a design student at Central St Martins, who is doing her final piece on anosmia. She sent me a questionnaire to fill out about what my life is like with anosmia and how I would describe it, as well as some more creative tasks, that were very therapeutic to complete. I'm very excited to see the final piece and hope that it has some impact on our cause!

This one has numbers in it

I went to London today and for the first time in my life, met other anosmics. It was a bit weird really, because not having a sense of smell doesn't leave any visible mark on its sufferers, so it was fun trying to guess who was anosmic and who was moral support. It was a pretty inspiring evening, listening to other peoples experiences and how they cope with the lack of odour in their life.

I spoke to one woman who is pretty much the pioneer of smell training, which, as I've mentioned before is the process of smelling different essential oils every day in order to reawaken the olfactory nerve. I have some more information from her that I'm going to read through properly later, but the thing I found most interesting is that she recorded her findings, so she could make a chart of her progress (or lack of). I think that this is something that I might start doing as it might make the whole thing seem more productive rather than disheartening. I know that my last blog post was pretty sad and angry, but now I've had a bit more time to come to terms with it, I think I'm ready to start being proactive about it again.

There was another woman who had lost her sense of smell in an ice skating accident; shed fallen on her backside and then the back of her head. Her partner assumed that it was rapid movement that had been the trigger; an MRI scan proved that it was in fact nerve damage. Another lady described herself as 'in remission'. Her sense of smell had gradually faded and now it was gradual coming back. She didn't want to be too excited about it however, as she said that she wasn't sure if it could just go again. Also, she didn't want to feel like she was being unsupportive of other anosmics.

This last point kind of struck a chord with me, and it's s pretty big and important one. You don't have to be a sufferer of anosmia personally to support those who are. My parents have been a great help and positive influence in my personal struggle and neither of them have it. This is the attitude that I would like to change. Something that came up quite a lot over the course of the evening was the fact that if it was a disability that could be seen, then there would be a lot more sympathy and a lot more being done about it. Raising awareness of anosmia is a real challenge, because the people that have it just look like everybody else. They don't have hearing aids, or dark glasses, or walk with a limp. Perhaps if you were to cut off all our noses (because why not? They don't do anything for us anymore) then we would have the sympathy and the research that we deserve. Here are some statistics from a surgery conducted in December 2013;

There are 3.25 million anosmics in the UK.

60% of anosmics feel alone or isolated because of their disability
45% suffer from depression
55% have difficulty with relationships with family/friends/partners
94% no longer appreciate food

How is this okay?

Please, spread the word. Just bring anosmia up one day as a fun discussion to have with your friends and family. Think about the impact not having a sense of smell would have on your life. Spend a day with a clothes peg on your nose to understand what we go through on a daily business. Don't remember people or places. Eat cardboard. Accidentally drink gone off milk. Anosmia isn't even in the Microsoft dictionary. Get angry, get upset, get confused. Just whatever you do, please do not write this off as a minor thing that some people are vaguely complaining about. Anosmia is a condition and a disability the same way that anything else you can think of is. I'm sorry that you haven't been made aware of it from an early age like you were other things, but believe me, I am too am very aware of how inexperienced the medial profession are when it comes to this. I just don't understand how can you ignore something that, despite being an issue within itself, is such a large trigger for so many other recognised problems.

Sometimes a thing gets broke can't be fixed

I think I was a little bit wary about writing this post. I was worried that it would come across as too self-indulgent and miserable. But then I remembered that the point of this blog is to share my experiences of being anosmic. So that is exactly what I am going to do. What I would like you to do, for the purposes of this post, is to forget that you know me (if you do). I want you to think of me as just some stranger on the internet whose story you are reading. I don't want you to judge me or think that I'm trying to get sympathy from the people in my life. I just want you to understand what someone, anyone, feels like when they are told that they can never smell again.

Yesterday I had my final check in with Mr Philpott, just to see if maybe the surgery was taking a while to work. It was the same old smell tests, the same old endoscopy and what is now becoming the same old story of being told that there has been no improvement. If there was going to be any, it would have happened now. So that's pretty much it. During the first round of smell tests (think marker pens) there was possibly some improvement in sensation (the back of my nose tingled) but nothing so substantial as to give Mr Philpott much hope to my future. He suggested that it was probably not worth my while to see him again as he couldn't think of anything else that would help me. I thanked him for all of the time and effort he has given not to just to me, but to so many other anosmics in the country.

I know technologies may improve in the future and I know that I should think positive that at least I tried. But somehow that doesn't really make me feel any better. Fine, there might be better treatments in the future, but why should they work for me? Why should they work at all? It's taken us this long in the 21st century to even get this far. And trying to remain positive after my first set of smell tests after my surgery has only made this news that much more heartbreaking to hear. Don't tell me it's going to get better, because that isn't going to help. It might do if there was more than one doctor in the country working on it, but there isn't. This is the reality of the situation; I will never be able to smell.

It shouldn't make a difference, I know that. I've gone this far in my life without having a sense of smell, why should I be so upset that the rest of my life is going to be the same? I guess it's because last year has been such an emotional roller coaster. And there was that moment, that one brilliant shining moment, where I thought that maybe, just maybe, it would all be okay. Anyone who knows me knows that it is not in my nature to not try and find the best of a situation; I am a very positive person. But right now, I'm finding it really difficult. I think my mum described it best by saying that it's a grieving process. And I suppose really I am mourning for the things in my life that I have missed, will continue to miss and will never know to miss. A key part of my body does not work and it can't be fixed. It is not too dramatic to say that I am disabled, because in all actuality that is exactly what it is, no matter how over the top you think it is to say so. I would just like re-iterate the impact that being anosmic has on your memories, your relationships and your sense of taste. You can rubbish that all you like but it's been scientifically proven; if you would like further information on how it affects all of these things then please see previous blog posts. I bet you anything that if it was an impairment that could be seen, then there would be a lot more understanding and recognition of it. My nose has purely become an aesthetic. Fine, I can breathe through it, but I can also do that through my mouth just fine thanks and I don't miss out on anything doing so.

I honestly don't want any sympathy for this. I am sad, but more than anything I am angry and I am frustrated. I'm sorry if this post has come across as being negative and passive-aggressive, but I have had too many conversations lately with people who just don't get it. And I know that's not everyone and it's not even the majority, but it still makes my stomach get all knotted, especially when it's people close to me. That's why I wanted you to try and forget who wrote this. All I want is for people to understand what a huge deal this is for me (a stranger on the internet) and for so many others like me. That's all.

Annual update

I've been running this blog for just over a year now and although it maybe hasn't made any lasting impact on anyone's life, it certainly has helped. I know that is has made a difference to some people's understanding of anosmia and it's given me a constructive way to share my frustrations. A lot has happened in the past year with regards to my own knowledge of this disability as well as how it effects other people.I know that perhaps it hasn't been the most successful year for me in terms of any medical improvement but I definitely do feel that a lot of emotional progress has been made. This time last year I didn't even know the cause of my anosmia, let alone if anything could be done to try and fix it. Now I know why and have had one attempt to bring my sense of smell back. Although it was unsuccessful, I think it's important to definitely see it as a step in the right direction and a very progressive year. I'm beginning to fully understand the impact that it's had on my life up until this point and how it's going to affect things in the future, but also I think I'm beginning to make my peace with it. Of course it has it's days where you forget about it almost entirely and then it has it's days where it's the most frustrating and upsetting thing in the world. But I think that it's okay for me to be sad about the fact that I can't smell and to get annoyed when other people take it for granted; so long as it's not all the time. After all, it's a natural reaction when something doesn't work right, especially when it's your own body.

I have another appointment with Mr Philpott in three weeks for a third round of smell testing, just to make sure that the surgery isn't simply taking it's time to make any difference. I've been trying to do my smell training daily, however it's becoming increasingly frustrating. I cannot tell the difference between any of the essential oils I'm using, which range from peppermint to magnolia. Sometimes I can tell if there is a smell apparent, but I've realised that this is only when I'm focusing entirely on what I'm doing. The times when I've done the smell training in front of the television, I haven't even noticed when I've got the bottle right under my nose. It seems to be coming more and more obvious just how much of it is psychological.

I am also sad to say that Duncan Boak, who runs Fifth Sense, has withdrawn his support from a young person's support page with his organisation. He explained that he had a lot of other concerns at the moment, such as gaining charity status and that at the moment this project of mine was not a priority. Obviously this isn't ideal, but it's important to remember that I never actually set out to be a part of Fifth Sense. There is still no reason why I cannot create this support network off my own back and then link in with Duncan in the future. It is something that is very important to me and I know that I have the time and dedication to make it successful. I am aware of the issues that will arise but I believe that with some patience and support from friends and family, we can make it happen. This blog gets around 200 unique hits at the moment so that's a good start!