Strength In Numbers

Hello I'm still here! I've decided to keep posting my posts on here also. So you will find them on my Wordpress Site and this one. You have a choice ;-)

If it wasn’t for the support of others, I don’t know where I would be right now. Not as strong and positive as I am that’s for sure. My family, friends and the wonderful groups I have joined and the group I run, has saved me.

To some that may sound a bit melodramatic but its true. When I first acquired Anosmia, I was numb, I truly thought my life was over and I’d never be happy again. I wanted to give up and for a long time didn’t even make the effort to try and do anything about it. My family rallied round, my friends, they were all amazing but I couldn’t pull myself out of this complete depression and the loss I was feeling.

I discovered Fifth Sense, a charity for Anosmia, through the internet and made a half hearted effort to get involved but even that didn’t really help. They were brilliant but I was in such a bad place I needed something more personal to get me going again.

So one day I was listlessly looking at Facebook and just out of interest decided to search for Anosmia groups, and to my amazement found three! I went onto
each group had a read through the descriptions and decided to join them
all….well what had I got to lose? My sanity had already done a runner ages ago. Once my join request was accepted, I introduced myself expecting nothing in return, then logged out because I couldn’t be bothered by then. At that time I had the attention span of a knat!

I went to bed exhausted as usual, as I wasn’t eating at the time because it either tasted like sh…t, oops sorry, or nothing. Such is the life of an Anosmic.

But in the morning I went and checked my emails and found lots of Facebook messages from the various groups saying things like “we understand what you are going through” and “we are here to support you, don’t feel alone” and lovely considerate, thoughtful comments like that. Some told me their stories and
others gave feed back about my own.

All of a sudden I didn’t feel so lost there were people out there like me, who were going through the  same thing and managing, getting on with their lives even! So that was it for me I was on these groups every day gaining strength and a spirit of community from them.


So much so that eventually I felt I wanted to give something back. That was when the idea of forming my own group began to develop.

‘Living Well With Anosmia’ was born at that point and so many amazing people have joined. My goodness, it puts what I’ve been through into perspective. Some of these brave people had been through awful things like car crashes where they sustained terrible injuries, not only to their heads but their bodies too. Others had been Anosmic for years and were still so strong. Some didn’t have a any support at all.

But there was one thing that stood out from all of them, they wanted to fight, to make their lives better, to find joy in life again. This was great for them but great for me too. It made me more determined than ever to start living again instead of existing and also to help other people do the same.

So fast forward to now, the group is growing and my objective is working. We have a laugh in here together, against all the odds. We suggest food to try, coping mechanisms. And most importantly of all we help each other and I feel I am helping people too. Yes there are bad days for all of us but we can come onto the group and let off steam, get understanding and buoyed up again.

I love all of the groups I’m in and have a so much to thank them for. But this group, my group are wonderful individuals, strong individuals and I cant ever imagine being without them now.

So if you feel ready to take that next step and reclaim your life please join us at livingwellwithanosmia be part of a new journey.

Swap over info.

Hello all of my friends. I wanted to let you know that I have moved this blog over to Wordpress.
The reason for this is because there are a lot more options to customise my blog and I can make it into more of a website.

You see I don't want it to be just about me anymore, I want to help other people in this situation so that they are able to move forward with their lives and start living again.

I have added various pages and it is much more interactive now.
I very much appreciate you following and hope you will continue to do so.

This is the link

https://anosmiamyworld.wordpress.com/

Please join me over there. Anosmic or not you are all welcome!

Food for Thought.

This is a subject I think about a lot, well you cant help it really, eating is something you have to do every day if you want to survive. The problem is, as many of you will know, trying to eat when you have Parosmia, is no easy task.  Its a case of forcing it down your neck as quickly as possible in most cases.

I say in most cases because these days, (after a year and half of this nightmare), some things are now bearable....even pleasurable dare I say it.

If you remember in my last post about smell I said its a case of my interpretation of certain smells being different from the normal now, and I have to recognise these as the new smells of things....have a look at the previous post for more detail

And the same can be said for food also.  It doesn't taste as it should, but this is now the new taste of certain foods. Think back to my 'orrible onions post, when I said the taste of onion and garlic was like eating rotten food, if you read it that is! I still anticipate some food to taste as it used to and its very disappointing when it doesn't, and even worse if it taste vile. That's Parosmia for you!

Well on the other side of that, the taste of milk chocolate for example is sweet and... weird, that's the problem I cant describe what it tastes like anymore but to me that is now what chocolate tastes like and the main thing is it isn't horrible.

So now here is a list of my taste interpretation of some everyday foods that we all eat. (or used to in my case!).





Lets start with savoury:

• Chips - cooking oil
• Fish - rotten food
• Eggs - rotten
• Bacon - salt
• Cheese - salt and maybe a bit of something else....tartness?
• Chicken - rotten, unless in a sweet sauce, then bearable
• Beef - used to be horrible but now pretty tasteless, (I'll explain about taste shifts at the end).
• Chilies - no taste, but I get the sensation of heat (which is good as its some kind of association).
• Garlic - disgusting...rotten to the worst degree.
• Onion- the same unless well disguised.
• Food in sauces -
• Chilli Con Carne - heat and.....thinking here!! savoury, in a nice way but I don't know what...argh!
• Curry - horrible unless its sweet, like a Korma as that masks the taste of garlic.
• Spaghetti Bolognese - tinny, and bitter = not good!
• Casserole - if its beef and has a lot of gravy, too meaty, rotten.
• Tuna pasta - rotten as I cant eat tuna anymore.
• Cauliflower cheese - nice good texture, salty and a bit creamy. I always get a big helping at my mum and dads, he makes great cauliflower cheese....anyway, I digress.
• Sweet/Puddings -
• Ice Cream - effect of coldness in the mouth is good, and its sweet. Blackberry Crumble flavour works well due to the texture of the crumble in it, and the tartness of the blackberry.
• Lemon Meringue Pie - lots of different textures, lemon works well for me as it is tart and sweet overall. (Goes well with ice cream in fact).
• Cake - good, as its sweet and gooey.
• Cheesecake - one of those weird indescribable tastes again, and I don't like the texture, so not very keen.
• Dark Chocolate - not very nice at all, but again I don't know how to describe the taste...oh good grief, just nasty!
• Toffee- mmm, ok still a bit odd tasting but the sweetness masks it a bit, and if its really soft I like the texture.

Tastes shifts -

Sometimes, and it is the case with a lot of people with Parosmia, things taste ok then after a period of time taste horrible. I don't know why this is but it can be disappointing when you have just started to enjoy something again then it becomes awful to eat. It can be as short as a day or two or over a period of weeks.

The worst for me was eggs as I used to like the different textures in omelettes, however eggs taste bad again, as you will see from my list, so that's yet another dish to cross off. The same goes with fish it was good, then I started to really dislike the taste and texture....so now another no, no.

On the plus side from bad to good - tomatoes used to have no taste and I hated the texture, but now a sweetness comes through and as long as they aren't too ripe they are fine.

So there you have it the complex world of Parosmia.....I wouldn't wish it on anybody, but its a case of adapting and experimenting with different types and combinations of food. Otherwise I'd probably hardly eat anything. Bon appetit! (Not being sarcastic, honest!

Making Sense of Scents.

A few days ago I was sitting in my sunny front garden contemplating.  My clever husband had just finished building some decking with a lovely balustrade and trestle, as this little area is a suntrap.  I was contemplating because I was trying to decide if I should bother to try and grow a scented climbing plant of some description along it.  Maybe honeysuckle, lilac or a climbing rose? It would look lovely I'm sure but wouldn't smell of anything to me....but then I think I'm being selfish, other people would enjoy it, like friends and family who often come to visit.  I realise I have to be careful sometimes so as not to become thoughtless about other peoples' pleasures in life.

I catch myself being like this on occasion and don't like what I see, a good kick up the arse wouldn't go amiss right now! So instead I consider what plant to grow on there, I'll ask my husband Ruck what he thinks too...a joint decision.

My interpretation of the smell of things differs now, the smells I identify with certain things don't connect anymore. Like I said in my articles on Smell Training, I have to, for example, learn that my smell of grass isn't the same as your smell of grass, but I need to recognise that as the new smell of grass for me.
Let me give you some examples, unfortunately not all pleasant ones due to my Parosmia, which you know about if you've been reading older posts. So here is a short list that I've compiled:

• Perfume - sweet but no distinctive notes to it, i.e. flowery. musky etc.
• Coffee - Smokey, but not horrible.
• Tea - no smell.
• Basil - sweet, no really distinctive smell however.
• Onions - horrible, one of the worst in fact, sulphur, sulphur and more sulphur.
• Chicken - rotten kind of smell, not good
• Pork - nothing at all.
• Beef - cardboard!
• Bacon - burnt smell, but not horrible.
• Sausages - Sulphur, not nice.
• Smoke - again sulphur, yuk!
• Grass - earthy, so not too bad.
• Flowers - most of these I cant smell at all, but I did get a faint smell of lavender once, so I grow it all over my garden. But sadly this seems to have faded now. I wont dismiss the fact that it might return though!
• Chocolate - no smell
• Milk - no smell
• Bread - no smell but if its baking there's the sulphur back again!
• Eggs - Ugh!
• Spices - the odd musky kind of smell.
• Vanilla - this is one to celebrate as it smells like vanilla, especially the candles!

I'll end on that one as a positive note or I could go on and on so I wont bore you forever!

Now, as I stop to contemplate again...there is no smell in the air. I'm sitting in my kitchen writing this, and breathing in nothingness. I've forgotten what my house used to smell like I suppose, and often check with Ruck that it doesn't need a good old airing or air freshener spraying all over the place. I sometimes get a smell of something in the air, but cant identify it and have to ask what it is. If I'm outside it often turns out to be chimney smoke or the farm smell, which oddly enough smells ok to me.  We live quite close to a farm so this can be a common occurrence. I do miss smelling things as they should be though and not smelling the things I used to love, but I'm trying to come to terms with this. Not because I'm giving up on things going back to normal but because I'm preparing myself for the fact that they might not. Its a fine balance and I try not to get down about it.

Next time I want to talk about taste with you all, that is a weird one with more unpleasant than pleasant experiences unfortunately, but ill leave it here for now....thanks for reading as always.

To anyone suffering from Anosmia, Parosmia or related do you have good and bad smells? I'd be interested to know your interpretations. Please feel free to comment.

'Orrible Onions!

Ok not the most exciting of topics but for me a pretty interesting one none the less.

Let's talk about onions.

Before my Anosmia I liked onions, they are present in so many dishes meaning I cooked with them a lot....our relationship has now changed however. For some reason, once my Parosmia, (distorted/horrible taste), kicked in, onions were unbearable. More so than with any other food, and there were plenty that were pretty bad, I won't start naming them however as the list will scare you off reading any more of this post!

But onions are confusing my Parosmia at the moment. All of a sudden they taste bearable in some forms such as shop bought potato salad from Lidl, that contain chives, a member of the onion family. Also in the sweeter type of curry such as Korma or Pasanda, which definitely contain onion. I think it's the fact that all of these foods have a sweet side to them that is making the difference. Even the potato salad, due to the sweetness of the mayonnaise.
All of this sweetness seems to help counteract, or at least balance out the harsh, horrible taste of onion...and it makes sense to me really as I've always been able to manage quite a few different sweet foods even with my Parosmia.  Maybe I'll try caramelised onion next.

I suppose what I'm trying to say to my fellow sufferers is don't be afraid to try things, yes its disappointing if it turns out to be horrible, but you can always just pull a silly face and spit it out again, preferably not in public though!
But in all seriousness, I'm really not trying to make light of this awful affliction. Crikey its only in the past couple of months that I've started trying things again and some are still disgusting, like garlic in any form at all for example, and even though I'm getting on with onion a bit better, raw onion is a massive no, no! But please try and experiment with different foods my friends, what have you got to lose.....a bit more of your sanity, I lost that ages ago when all of this happened, but I'm slowly getting it back I hope. So be brave, we have to be don't we, either that or give up and I don't plan to and you shouldn't either.

So this post is for all my friends in the three great Facebook Anosmia related groups that I am in.

• Parosmia/Phantosmia Support Group
• Aquired Anosmia and Parosmia Support Page
• Anosmics of the World Unite!

What I would have done without your support goodness only knows.  Also anybody else reading this who is suffering from Anosmia and related disorders, if you are on Facebook I really do encourage you to join these groups and get the support you need and deserve.

Oh and one more thing, yes ok I'm rambling! Anyone without anosmia reading this, (lucky you), I hope this blog is giving you an insight and understanding of this little understood and life changing condition, I'm glad you are making the effort, and taking your time out to read it.

See you all back here next post, unless I've offended anyone and been too outspoken. I really want to support everyone like me, but tell me off if you feel the need x

Getting My Head Write!

First of all, no I didn't get my grammar wrong in the heading, I just have a scribbly head at the moment. If you looked into my brain it would look like this photograph.

That's what my writing looks like anyway but my brain is trying to match it! My husband tells me my brain goes a million miles an hour, so how do I calm it?
I'm doing it now, I write, that's what I do, what I've always done I suppose really. Starting with lyrics, cute rhymes in family Birthday cards, this blog and I'll let you into a little secret, a children's book which I'm currently working on. Am I good enough? Who knows, but I'm certainly going to give it a try. Is it good for me? Yes. Because I think if I didn't write it I'd scream it, not such a good idea I suppose, the neighbours wouldn't be very impressed!

I haven't written a single line about Anosmia yet because had I not started with the above chatter the rest of this post wouldn't have made sense.....sense get it, oh dear I'm at it again with the bad jokes. Anyway we've been on our holidays to our favourite Greek Island of Kefalonia. The last time I went I didn't have Anosmia so it was a bit of a shock to the system getting off the plane to blank very hot air.  No smell you see, it used to be a kind of warm olive smell if you can get that.......sort of like heated up grass and leaves and countryside. I loved that smell and I have to admit missed it when it wasn't there this time, it did make me sad.
I'm pleased to say however that I ate quite well, I learnt how to say "no onions please" in Greek, as you'll probably remember if you've read any of my previous posts, onions make my Parosmia kick in, and taste disgusting. Funnily enough the word onion in Greek is pronounced 'cremmudia', (not spelt like that though), which kept making me think of cream which I can eat but not in that case! Being able to have no onion in my food helped though as some savoury food is palatable these days, and the sweet pastries were yum, even to me!

So all in all we had a good time because some things hadn't changed like the lovely Greek friends we'd made over there and met up with again, or the beautiful scenery, or the guaranteed hot sunshine, the stunning coloured butterflies, the warm emerald sea, there I feel better already.

Life is still a challenge, and when I came home the reality was still there waiting for me and the rain didn't help aghh the English Summer! There are still daily struggles and challenges. For example my hubby, Ruck, was out and I wanted a strong espresso coffee which I have with a tiny bit of condensed milk for sweetness, but all I had was what had been in the fridge from before we went away so.....yep I risked it and used it because I couldn't tell if it was off or not, but my tummy told me later that it definitly was. Hence quite a few trips to the bathroom that day, sorry too much information, but I was ok after a good clear out! Life can't be that bad if I can joke about it sometimes I suppose!

So until next time 'yassas'!

Blank mind = Blank page!

Hello, long time no post....oh where to start. Well I've been doing more reading than writing lately because my brain has been on shut down mode for a while, (thanks to some new tablets rattling around in my system, but that's another story), so I couldn't come up with anything new.
I thought at the time this was very lazy and un productive of me, but as it happens its not been a bad thing because as I've been reading, I've also been learning so it still feels like I've achieved something!

For example I now have an Instagram account, which I never intended to do but after joining an Instagram group out of inst-erest....ha, ha good one there! I decided to have a go, and you know what, its quite enjoyable. I'm just playing with pictures and learning how to use the ever confusing hash tag at the moment but I may even get the hang of it enough to get serious and use it properly eventually.  In the meantime if you want to have a look please do at www.instagram.com/asongtowrite. For example, this is a photograph I took of Wild Violets in The Lake District, not bad for a beginner!

Anyway, my Anosmia has been doing some weird things lately.  Well I suppose its more Parosmia, (unpleasant phantom smells), these days actually, and that does act extremely weird, as you'll know if you've read any of my previous posts.
My smell has been mostly of the phantom 'baking bread' variety, and you are probably thinking 'well that's not so bad', but try it constantly every second of every day and you may change your mind somewhat. Even more so when it is laced with a hint of sickly sweet from deodorant that has just been sprayed, or air freshener that's been wafted around the room, oh and combined with the odd random addition of the phantom smell of paint stripper that likes to rear its ugly head on occasion.  Edge of insanity is a word that springs to mind when that little lot hits my nostrils I think, real or no real!

However there is a plus amongst my doom and gloom....yes I know sorry I'll quit the moaning.  I can actually handle the odd thing with onion in, yay result! I discovered this thanks to a tub of shop bought potato salad, when having lunch at my mum and dad's. I used to love potato salad and it was too tempting not to try it, and expecting the worst, I did just that. I was ready to do the usual trick of launching myself out of the chair and dashing to the sink to spit out said item, which I know sounds disgusting but when its a choice between that and being sick......well you get the picture. But instead, even though it didn't taste like potato salad should, it wasn't awful either, kind of vinegary, sweet and salty with a smooth texture, which for me is good. Suffice to say I ate rather a lot of potato salad that day!
I am now making a greater effort with the food I try to eat, instead of dismissing it because it has onion or garlic in it. Dare I hope this is a good sign, could something in this pesky nose of mine be healing correctly? If so I hope it hurry's up as we are going on holiday soon, what a treat it would be to get some pleasure out of eating while I'm away.
Say a little prayer for me.