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!

All I want for Christmas is to not poison everyone

I'm a member of various groups on Facebook that I suppose act as a sort of support network for anosmics worldwide and for the past few weeks they have been full of messages of fear and sadness. You'd be amazed at the amount of people that can't smell that worry about poisoning all of their family and friends with their Christmas dinner. It's not as silly as it sounds, really. Anosmics can't smell when food is burning or if it's gone off and quite often our sense of taste is impaired as well, so we can't try the food before we serve it to our loved ones. Similarly, many can't then taste the result of having spent the majority of the day slaving over a hot stove (hopefully an electric one to minimise the risk of an undetectable gas leak).

What about that idyllic image of sitting in front of an open fireplace, whilst the weather outside is frightful? What's more frightening to an anosmic is the possibility that the fire hasn't completely gone out by the time they go to bed, the smoke detector might be faulty and due to being unable to smell everything burning, they don't realise until the house has gone up in flames.

By the way, I don't want to boast, but not only can I not smell Christmas trees, but I also can't touch them because I'm allergic. My life is terrible.

Don't get me wrong though, I love Christmas and I'm sure many other anosmics do too. Not being able to smell it doesn't take away from the main joys of opening presents, being with your family and it being acceptable to start drinking alcohol at ten in the morning. However, it does also make it quite a stressful time for a variety of reasons. I know that there are obviously much worse people off during this period, I just wanted to write about some of the stuff that affects me and hundreds like me that other people may not have thought about.

Although, just because I might not be able to taste Christmas dinner fully still does not mean I will eat brussel sprouts.

November blues

It's kind of weird how since being told that all my improvements in smelling were purely psychological, they've stopped. My life has completely reverted back to what it was before the surgery, only now I've just sort of stopped trying to worry about it. I don't want to say that I've given up, but probably more just that I'm pausing. I've given it one shot at trying to sort it out and that didn't work, so maybe now it's time to just rest a while with the knowledge that I am still completely anosmic. It was pretty emotionally draining and I don't really feel like going through it all again. Especially with Christmas coming up.

I was so looking forward to the possibility of being able to smell Christmas this year. I know it's still only November and too early to be thinking about that time of year but tough. As far as I'm concerned, Christmas is the only good thing about winter. The rest of it is cold and dark and miserable. I know there are much more important aspects to care about, but it's just one of those things that I was really looking forward to. But I suppose really I was just silly for getting my hopes up.

Mr Philpott is seeing me again in February to see if there continues to be little improvement after surgery. You never know, it could just be that it's a really slow recovery process! Which would be pretty weird, actually. Maybe I'll be learning to smell without actually realising it? Although having said that I've been surrounded by paint and wood stainer all weekend and haven't had a single whiff so maybe not. I must remember to keep up with my smell training, but I have to admit that I have lost heart somewhat.

On a much more positive note, the responses that I've had for my young people's anosmia project have been amazing. I've sent an email with all of them in earlier this weekend, so hopefully I'll get a reply soon with an update of when they'll be available on the Fifth Sense website. There have been so many messages telling you not to worry, to learn to embrace the weirdness and realise that you have something special and unique about you. I think sometimes I lose sight of that because I'm too busy feeling sorry for myself and thinking of anosmia only as a disability. But I suppose also it's a part of my identity, and there is a community that goes with that too. I just wish it was more easily accessible, that I had friends that I could turn to and talk about it too whenever I needed to. But I suppose really, that's actually what I'm trying to create. I really hope it works.

4 points, 100% anosmic

I went back to see Mr Philpott at the Spire hospital yesterday to have another smell test. This was exactly the same as the one that I had at my initial appointment with him to gauge the full extent of my anosmia; a number of 'sniffin' sticks' done blindfolded and a few with a visual stimulus to see if that could prompt any olfactory reaction. I thought I did rather well at this bit and there were many that I answered confidently. It was interesting to note that half of the images I was told the smell could be I have no memory of smelling, so a lot of it was done by me assuming that the smell would be similar to the taste. These images included various fruits, honey, wood, leather, smoke, wine etc.

I then had another nasal endoscopy to have a look at the inside of my nose to see if everything had healed well from the surgery; which it has done! Mr Philpott then discussed the results of my smell test with me. I had improved by four points since before the surgery. Which is nothing, basically. Especially as three of those were fluke; I had simply managed to match the smell to the right image accidentally. The only one I got right was peppermint. This means that I am still what they would call 100% anosmic. I needed eight more points in order to move into the next category which is 'diminished sense of smell'. 

Mr Philpott said that there was nothing more that they could do for me. He would be interested to see me in another three months from a purely academic point of view, to see why the surgery hadn't worked, which I think I will do. Because quite honestly, I would quite like to know too.

I don't really want to go into how obviously disappointing this is for me. I will keep at my smell training with the essential oils and I keep an eye on any medical advances that are made in the anosmia field in the future, just in case another alternative presents itself. I know I said before that I thought I could smell sometimes and even though that turns out to now be purely just psychological and not real, it's better than nothing at all.

FIFTH SENSE / UNDER 25 AND ANOSMIC

This one's kind of a big deal, so I wanted to give it a post all to itself. As I'm sure I've mentioned before, there is a website called Fifth Sense (link here), which is a site dedicated to anosmia and anosmic support.

The one thing that I always felt was missing from it, was advice aimed specifically at young people. Even on the anosmia page on Facebook, the youngest person I have ever come across, apart from myself, was 34. This may not seem like much of a big deal, but the concerns that are shared are those to do with burning down their house, or what their spouse thinks of them, or their children. These are issues that are way above the head of someone under the age of 25 who is also suffering from anosmia. They are having to deal with the constant teasing from their friends, who cannot take it seriously or understand what a big deal it is. In a time where all you want to do is fit in, you are already feeling so completely isolated from the world around you that it just makes it really, really tough.

So I decided that I was going to change this, and I was going to create a support network for anosmics under the age of 25. I emailed Duncan Boak, the man that runs Fifth Sense for advise and after some discussion, he offered me a subsection of the Fifth Sense website itself to do this. This is better than I ever could have hoped for, especially as Fifth Sense itself is continuing to grow and aiming to become an internationally recognised charity, the groundwork has already been done for me. I am spearheading an international support group for young anosmics.

I have been posting on Facebook, on twitter, on tumblr... anywhere I can think of to ask young people with anosmia to come forward and tell me their stories and any advice they wish they had been given, or that they feel that they could give to other young anosmics. I have already had so many replies from all over the world, and it is incredible. We are not alone. There are people out there who are going through exactly the same thing as each other and I want them to know that, to know that they have the support of so many others just like themselves.

So please. If you, or anyone you know is under 25 and ansomic please get them to message me so I can include their stories on the Fifth Sense website where it can help so many others.

A very delayed post-surgery message

I am so sorry that it has taken me so long to post. I've been unbelievably busy, so I'll try and update you in everything that has happened and I will try and keep it short.

So... the plastic splints! They ended up looking something like this, and ended up reaching right to the back of my nose (as you can sort of see in the bottom left hand image) and were basically horrific.

There was no magic moment in regaining my smell, once they were out, more just relief that I could wiggle my nose again. I could then also stick a finger up it and prod around my septum so I could figure out exactly what the damage was. And basically, I had a massive chunk taken out of it. If you could see up my nose you would be able to see the most impressive scarring ever, but luckily you can't and so it's impossible to tell that I ever had surgery!

And now, 3 months later? Well, there has been some improvement! Which is pretty amazing actually. It will be a very gradual process, and I have an appointment next Thursday to go back and see Mr Philpott to have another smell test so we can gauge exactly what improvement there has been. Smell is weird, because I still have no idea how much of it is psychological. So I don't know if I am starting to smell things, or if I'm just thinking that I can because I know I should be. I'm doing smell training every day, which involves smelling different essential oils, and some days I can name them, and some days I can't. But most days I can actually detect when there is a smell under my nose, which I could never even dream of doing before.