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!