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Posted in smell, taste

A Sense Of Kefalonia

Both my husband and myself love the beautiful island of Kefalonia. In fact so much so that we’ve bought a little rundown cottage over there to renovate. However that’s another story!

We went to Kefalonia a week ago, ahhh it seems like an eternity now we’re back to the nitty gritty of everyday life. There were a few revelations for me while I was over there however. Let me tell you about them.

  • My sense of smell vanished, not just a little but completely! 

Whilst here in England it had returned a little. For example I could smell certain types of candle, especially spiced notes with cinnamon in, also vanilla candles. I also got the odd smell of my perfume while I was spraying it on, and could smell food cooking if it was strong like curry for example. They were quite faint but definitely there.

Once I was in Kefalonia however….nothing. I didn’t even notice a first as I was enjoying the sunshine and relaxation so much. It clicked when we were strolling past taverns that often lined the streets, with Greek music playing softly in the background. Am I making it sound idyllic yet? On one of our little strolls while we were deciding where to eat, I asked my husband if he could smell the food or was it quite faint, thinking maybe it was because we weren’t that close to where they were cooking it. He said yes he could smell it and I asked him to describe the smells as I always did. Spicy Kebabs, fish, hot sauces. All the things I had faint smells of in England….what?!

  • I didn’t mind

Now don’t get mad at me here. Yes I was surprised, but it didn’t make me want to cry like it used to. I accepted it, I was calm. I think it was my whole state of mind. I let it wash over me and it felt fine. Getting angry and upset about it is understandable I know but the fact that I was somewhere where I wasn’t fighting with early morning traffic, or having to drag myself out of bed after a sleepiness night, or go to a job that I hated, made the whole thing seem less of a problem.

  • No Parosmia if you don’t know what I’m talking about check out this link.

I ate food and it didn’t taste like dog sh…. anymore, again the calm feeling was there. Elated too of course! Ok I couldn’t taste anything apart from the four true tastes. Salt, sweet, hot and umami, (very rich food i.e. strong/cheesy ), and they were faint but hey what would you prefer?

  • When we reluctantly returned to England my slight sense of smell came back.

However so did my Parosmia. Not when eating but when smelling certain things, they weren’t that pleasant, especially when I was tired or stressed.

I do believe your state of mind can worsen these distortions. For example if I wake up at night I can get a smell as if the air is sweaty, I’ve often had a bad day i.e. stressful, upsetting or just plain horrible so…..get the picture here?

  • These things have really made me think about my quality of life.

Ok so you cant go rushing off to a lovely island if your Parosmia gets worse, or your stress levels get so high that you cant cope. But you can walk away for a bit, enjoy other things. The sound of the birds singing, a beautiful sunset a lovely cuddle off your nearest and dearest, (yes ok a bit corny). Walk, run, give that stress a beating, take up a hobby, read a favourite book anything to take your mind in a different direction.

I still get days when my Anosmia floors me and I want to throw things around the room, when I bury my head in a pillow trying to lessen the Parosmia smell. It is less often now though. I breath, I calm my energy, I think of the positives and it really does help.

So I intend to create a little piece of Kefalonia in my mind. 745C3F17-0A3D-4CB7-9C61-8B03F30984ED[1] I can go to it when it all gets too much, play my Greek music, have a BBQ, yes I can enjoy things like that now. Raining ha, no problem we’ve put up a gazeebo! I wont be floored that easily.

When I return to my little Island, well ok not my Island as such! I wont be worried if my sense of smell goes for a bit. Maybe it wont this time, who knows? I’ll just live for the moment and enjoy my life, dive into the unknown, the sea is really warm over there. Sorry I’ll shut up now!


Do you have a place of calm? What are your coping strategies? Please share in the comments if you would like to.

 

 

 

 

Posted in Anosmia, Parosmia

Don’t Be Shy To Try!

On my journey from Anosmia, to Parosmia to…..well something in-between, I’ve realised I’ve become a wimp.

Yes ok, at the Anosmia point who would actually want to eat anything when it doesn’t have a taste but just gives you a sensation of eating cardboard? But YOU HAVE TO EAT, and I did. Then the Parosmia point which personally I think is worse than having Anosmia. Do I really want to put something into my mouth, try and chew it when it tastes like dog sh….?  You get the picture. But YOU HAVE TO EAT, and I did. (Whilst trying not to gag).

Now I’m at what I call, ‘the unknown quantity stage’. This is me……

Taste:

  • There is food I still can’t tolerate, you’ve heard me talk about this before. Onions and garlic being the worst.
  • Food I can eat one day then can’t the next, because all of a sudden they’ve taken on the ‘yuck’ factor. At the moment, eggs, sweet corn, beans, bacon, sausages, bananas and a few more besides….sigh.
  • Some things I can eat for the time being. Beef, pork, apples, fish and chocolate, for example. I even actually enjoy them sometimes…smiley face!
  • Food I can always eat, cheese, grapes, lettuce (ok doesn’t taste of much anyway), tomato’s, potatoes and most sweet things and very salty things….yes I know unhealthy!
  • Some food I just eat because I can, but its tasteless…..bored face.

Smell:

  • I get a smell, its not a horrible smell but its unidentifiable.
  • I get a sweet perfume smell, its a scented candle….yippee!
  • I try to smell something that I know is strong, I get nothing….sighs again.
  • I still get a horrible smell sometimes…..wrinkles nose.
  • I get some kind of smell, can’t be bothered to make the effort to work out what it is so dismiss it….shrugs shoulders.
  • I wake up to horrible smells almost like they are in the air itself then they fade away to nothing after a while….what?

 

So now you probably understand why I call this the ‘unknown quantity stage’.

I’ve given myself the ‘wimp’ label because now, from my bad experiences with the real no go tastes and smells I refuse to even try them.

If I get a sandwich from a shop I have to totally dissect it in case I find onion, and if I do as far as I’m concerned the whole thing is contaminated and I wont touch it. I have to read the label on everything and if there is even a miniscule amount of onion or garlic in it, even garlic powder, I wont even try it.

So the pizza that I very carefully hand picked all of the toppings for then discovered the tomato base had garlic powder in…. AFTER I’d eaten and enjoyed the different textures and crunch, was bit of a surprise to say the least.

Also eggs, if anything contains these evil things…its a nope again. Emmm but I ate a crème brule the other day and it was sweet and pleasant no hint of ‘nasty’ at all.

Corn on the cob, instead of tinned sweet corn…was actually ok when it had butter smothered over it and wrapped in tin foil then baked in the oven.

The smoothie with the main ingredient being banana that I unwittingly tried before discovering that’s what it was. Yes you’ve guessed it, I enjoyed it!

These experiences seem to be happening more and more these days. To the point where when I refused to eat a curry having discovered it had a hint of garlic in then decided to try it for my husband sake, well he was tearing his hair out at the time, I discovered that I couldn’t tell there was any garlic in it!

Ok sometimes it doesn’t always work that way, crisps with garlic flavouring in are still horrible for example. It seems however some things aren’t these days, but the only way I will ever know is to take the plunge and TRY things. So now I’m attempting to eliminate the ‘wimp’ label I’ve given myself, and at least give the ‘no go’ food a try instead of dismissing it straight away.

The same goes for smell. I cant go into a kitchen if bread is baking as it smells terrible, or did smell terrible. Until I went to see my parents and dad was baking bread….it just smelt insignificant, nothing to make a song and dance about anymore.

My best perfume that smelt like a cross between vinegar and antiseptic, up until I sprayed some on without thinking because we were going out. Instead it smelt sweet and pleasant.

As with taste, some things are still bad. I’m sad to say grass still smells horrible….maybe one day. But my Smell Training is coming along nicely, I haven’t given up on it, and things are progressing well.

So the morale of the story is an obvious one my friends. Don’t dismiss things without trying them first, don’t be ‘shy to try’. You may be missing out on the opportunity to discover pleasure in food and smells that weren’t there before. You’ll never know if you don’t give it a go!

 

Have you discovered tastes or smells that have improved recently? Please share if you like.

 

 

Posted in Anosmia, Parosmia, smell, taste

Now What?

Ok this isn’t the most inventive title I’ve come up with. So If I’m not careful I could bore you even before I’ve started this post. But hang on though don’t go yet, I want to explain. I feel like I have written so much about my life with Anosmia the definition of me has become a little blurred around the edges. Am I Debbie Jinks, or am I a person with Anosmia?

I was asked to write an article recently for an online magazine, and the theme was ‘Resurrection -what hardship have you come back stronger from’. Id written a piece about my Anosmia for them before, and realised as I sat down and started writing that I was going over the same old ground , my Anosmic journey. I have come back a lot stronger yes, you will have read about this in my previous posts, but I am also different.

Don’t get me wrong I’m not dismissing the whole thing, I haven’t recovered properly. I’m still skinny and can only smell perfumed candles. Food still tastes of nothing apart from the four ‘true’ tastes. I still hate onions and garlic and cant go near food with them in. But my Parosmia has lessened considerably, I  don’t have to cover up my nostril to eat anymore, that’s certainly a better look when I have to eat in front of people now!

So yes I have improved, and I would never have believed it at the time, but good things have actually come out of this nightmare. Like my love of writing, I wold never have put pen to paper, or these days fingers to keyboard had I not acquired Anosmia. It was starting this blog that set the ball rolling and made me realise how much I love to write. To the point where I now have a website called, A Song To Write, and I am planning on writing a book or maybe more than one, you never know!

I would never started my Facebook Anosmia group Living Well With Anosmia, and got to know such lovely strong people, if I hadn’t acquired Anosmia. I love that group and the fact we can support and help each other so much. They often keep me strong when I’m having a bad day and I’m so glad I brought us all together. Facebook isn’t all bad!

I want to start writing about different things now though. Yes I’ve been sitting staring at a blank computer screen for the last hour, but now I know what I want to say.

Every Anosmic has a life outside of Anosmia.

I often see that it my Anosmia group. We have a laugh, share stories about what our week or day has been like, our plans for the weekend. We all still have personalities and relationships and good experiences in our lives. So my posts could go off the subject now and then, maybe I’ll share daft things with you, maybe I’ll share happy things with you and maybe I’ll share sad things with you. Not too often on that subject though I promise.

This blog however will live on, if I have any readers left after that little speech! I know this is a short and sweet post today, but I have to prepare for my blockbuster next time!

So lets chat again soon.

Please remember also my friends it is ‘Anosmia Awareness Day’ on Monday 27th of February so if you’d like to support this please wear red. You can find more information here thank you.

 

What stories or articles would you like to see featured in this blog? Let me know it could be fun!

Posted in smell, taste

Anosmic Anniversary 2

Tuesday 7th February is a big deal for me these days. Two years ago my life changed in a way I could never have foreseen.

I’m not going to re visit the past, as if you’ve been following my blog you’ll be clued up on that one. But what I do want to do is tell you how it is now. So are you sitting comfortably? Then I’ll begin.

Originally my plan was to post this on the actual date of my Anosmic Anniversary, but then I changed my mind. The reason being was that I wanted to experience it on my own. In the past I’ve written about what has been happening to me, my thoughts and feelings as they occurred. This was because it was ongoing, a day to day experience that I was continually going through. It was a thing that hurt so much, managing one day at a time was an achievement in itself. I needed something to help me express myself and this came in the form of my blog. Writing it down helped, and still does.

My Anniversary number 2 started like any normal day. I got up jumped around my living room a bit, this is called exercise I think, did some stretching, then writing. But not this blog, my website instead asongtowrite. I wasn’t going to work until 4pm, so my intention was to stay as busy as possible meaning I wouldn’t think about it too much.

I knew that I would eventually have to acknowledge this day though, so I sat down quietly and just let the thoughts and emotions come. Reflecting back on the last two years, I remembered how it felt when I realized I’d lost my sense of smell and taste. My devastation, the sadness of my loved ones, the loss, my disgust when my Parosmia reared its ugly head. Read this post Parosmia stinks! if you want some insight into that one. Then my dangerously severe weight loss when I stopped eating. The list goes on and on.

I thought, and let myself hurt, let myself feel whatever I wanted and it was a release as I began to realise that I wasn’t that person anymore. Don’t get me wrong I still have Anosmia and Parosmia, ugh! However I also have my life, which is so much better than it was. My writing which I would have never have discovered if I hadn’t started this blog. My family and husband who have stuck by me always. Also ta da! My sense of smell which has returned slightly. My Parosmia is also better, onions and garlic are still a no no, but I no longer have to put my finger over my nose in order to eat. Here we go, another link….. Nobody nose.

The best part for me was definitely some of my sense of smell coming back. I think I’ve motioned in another post about my first experience, but I’m going repeat it anyway. I had been writing in my office, come guest bedroom. I always burnt a scented candle in there just in case some of the smell came back to me, also because I loved the ambience. I remember leaving the room for some reason and blowing out the candle. I came back later and was overwhelmed by the smell of sandalwood, spices and perfume that had lingered in the room once I had left.I was so shocked that I burst into tears. My husband came dashing up the stairs thinking something terrible had happened, and when I told him he gave me a big hug saying how wonderful it was.

Oh yes wasn’t it just and it has got better. The sweeter more floral notes of perfume are coming through now instead of a distorted vinegar smell. I occasionally get a faint smell of my husbands’ cologne, and even the herb, thyme, if I rub it really hard between my fingers gives off a faint aroma, don’t get me wrong that isn’t what his cologne smells like by the way! I still cant taste food properly, but most of it doesn’t give me that disgusting distorted taste anymore. I feel healthier and people who haven’t seen me say I look it too.

So back to my sitting down quietly. As I sat there letting myself think some more, I was overwhelmed with positive feelings. I’d come so far, achieved so much and knew I could face my life with a lot more optimism. I’ve now completely fallen in love with writing it fills me with a sense of fulfilment. I’ve started a fantasy writing course, am submitting the odd article or two as well, and I’m writing a book. Not about my anosmia, I think that will happen one day however. Its a fantasy novel that I’ve got my claws into….oops no pun unintended , and I’m loving it. Any talk about dragons and I’m away with the fairy’s, oops another one!

I have also started two wonderful Facebook groups that are well established now and I love. My anosmia group ‘Living Well With Anosmia’, to support and encourage other people who are also experiencing this life changing condition, and my writing group ‘All Write’, which bring together wonderful writers to share, support each other and showcase their writing.

But do you know what the best bit is? I’m happy. I have dreams’ and ambitions again, even though I’m bit of an oldie now! Yes life still throws some crap my way, I still have my bad days. But the good days are beating them by a long way. So I’m going to stand up now, my back is killing me, shake myself off and get on with my good life.

 

Have you overcome a major hurdle in your life? Please let me know in the comments if you would like to.

 

 

 

 

 

 

 

Posted in Anosmia, Parosmia

A Merrier Christmas!

This was my second Christmas with Anosmia and yes I was nervous. I didn’t know how I would manage a second time around. Also last Christmas I didn’t have Parosmia just straightforward old Anosmia, if you can call any of this straightforward.

I’m sure if you’ve been following my harrowing journey you’ll know the difference between Anosmia and Parosmia by now. But just in case. Anosmia is a complete lack of smell and taste. Parosmia is a distorted normally horrible sense of smell and taste. So this effects my enjoyment of food immensely. Just imagine if you were chewing on something that tasted like it had come out of a sewer….I wont elaborate I’m sure you get the picture.

So where was I? Oh yes second Christmas. I’m thankful to say that my Parosmia has lessened over time so some food was pretty good. However Onions and garlic were sill disgusting, check out my post ‘Orrible Onions! to be further enlightened.

My family and friends were great, as by then they’d had a lot of experience with my Anosmia, including when it developed into Parosmia, so they knew what I could and couldn’t eat. This made such a lot of difference to my enjoyment at this festive time of year because after all, a lot of it is focussed around good Christmas grub! (Not the nasty things that are laid by flies etc thank goodness)! Anyway apologies, enough of that.

 

I’d like to share with you some of the things I could eat.

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Roast vegetables, which consisted of  potato’s, carrots, squash and parsnips. Cooked in olive oil, with salt, pepper and Agave nectar, which is a natural sweetener that you sprinkle over  before roasting. Not pour it on like I did when I  cooked them at home and they ended up a syrupy mush!

Turkey was fine as its pretty bland anyway, served with apple sauce as its sweet, and sweet is always good. The traditional cranberry sauce was a bit too tart.

Cauliflower cheese because cheese is great. Most parosmics will agree its a staple diet for us. The cauliflower was masked by the cheese so that was ok too. Pretty bad on its own though.

(Christmas sausage stuffing that I used to love was a definite no, no, onions argh! I have to be honest I missed that.)

The usual onion gravy was of course totally unpalatable but my wonderful husband found these little chicken gravy pots with no nasty stuff in at all…whoop, whoop!

Christmas pudding was yum. Sweet, gooey with lots of different textures which makes food more exciting. The Custard with it was nice too.

So are you impressed? I certainly was. I actually had a full stomach for a change, and with a few glasses of Amaretto down my neck that was me sorted.

But on a serious note anybody reading this with parosmia or anosmia should give some of  these things a go. They may work for you too.

The whole eating experience gave me such a boost that Christmas was a joy this year. Even getting a bit tipsy was nice as alcohol was pretty bad last time. I was so much happier which made my family so much happier too and I’m glad about that because, yes I felt guilty last year as I know they were tip toeing around trying to do their best. Its always a joy being with family at Christmas which is of course such an important part of it, that wonderful feeling of closeness. But this year was extra special because we were all happy. Its not all about food after all but the love we share with one and other and the being together that counts. Mind you a few party games never go amiss especially with my niece making you run around playing hide and seek with a ton of food sloshing around in your stomach!

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So a Happy New Year to all of you. Lets hear it for 2017, may we all be Merry and Bright, mmm I know that phrase from somewhere!

 

Did you have a good Christmas? What was the best part for you?

 

 

 

 

 

Posted in Anosmia, Parosmia

Letter To My Nose.

Hello reader, if you’ve been following my blog you will by now be familiar with both my Anosmia and Parosmia so this should make sense. If not please have a look at my older posts especially the ones under the ‘Parosmia’ categories and you will know what this letter is talking about, and why my nose isn’t exactly popular these days. Why am I writing a letter to my nose? Well because I want to and sometimes writing things down helps, its how this blog started off in the first place after all!

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Dear Nose,

Why have you let me down so much?

I know its not directly your fault that my nerve fibres severed from you when I banged my head and now they don’t work properly anymore. But you could heal better instead of getting all of them mixed up leaving me with Parosmia.

Have you any idea how it feels to hardly taste my food and what I do taste is normally disgusting?

Its left me hating you quite a bit especially when you decided to leave me with one nostril that cant smell anything and the other constantly distorted. When I have to embarrass myself at the dinner table by having to press down on the nostril that gives me a horrible smell and taste, taking that experience away for a bit so that I can actually eat something!

Yes ok you’ve helped me discover writing and I don’t know if I would have tried that otherwise, but why cant you heal properly for me? Are you ever going to? Should I be grateful for what I’ve got back? Oh so many questions and you aren’t answering any one of them. You’ve certainly messed me up a lot.

Oh nice of you to give me the odd decent smell back like vanilla candles, but is that it? I wouldn’t mind perfume, cut grass, food cooking thank you very much! Also I know I can taste the four true tastes i.e. Salt, Sweet, Hot and Umami and maybe I should be grateful that I’ve got that much, but I’d also like umm let me see …. chocolate, spices, tomatoes, beef, chicken and the rest.

I’m trying not to blame you I’m really not. I suppose what I should be doing is helping you out by getting back into my smell training and trying to stick to it this time! Maybe that way we’ll both be encouraged….especially if it starts to work. If I’m not helping myself I’m not helping you either.

So I’m seeing Chrissi my smell trainer soon and I will be honest and tell her how I’m struggling. I know she’ll understand and you know her well enough these days. Hopefully she’ll get me back on track then you and I might be able to come to some sort of agreement. We could see eye to eye again. Ha, ha the irony!

So lets have a go at helping each other, work as a team instead and see how we get on.

Love (ish)

Debbie x

P.S. I’ll try and start loving you again if you love me back too.

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Posted in Parosmia

I’m Not Broken.


Do you know why I put those words as my heading? Because finally they are true. Yes I may be bruised a little….still a lot sometimes, but no longer broken.

I want to share a story with you from when I was broken because its a poignant one for me. The food thing. If you’ve read any of my earlier posts you’ll understand exactly what I mean…

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Messy party table that’s what you get from us!

When I first acquired Anosmia, I thought that was the worst it could get. Well you know they say it gets worse before it gets better, how true that is”.

A few months into this life changing, heart breaking condition, Parosmia added to my troubles. This is a distorted and normally horrible sense of smell and taste and can often happen following Anosmia. But I had Anosmia in one nostril and Parosmia in the other so that was fun…not.

I distinctly remember one particular incident that occurred when I was at my lowest. It was my Mums Birthday, so as is tradition in our family, we went out for a meal. I considered making my excuses and pulling out of it but I would have felt so guilty if I had. We got to the restaurant a lovely little place that I had fond memories of before I became ill, and all sat round the table. The moment I was dreading occurred…out came the menus. I stared at the long list of food choices and almost broke into a sweat. I knew that whatever I chose would taste horrible because of my Parosmia, at that moment I felt like crying. My family knew my dilemma and said things like try going for something bland, I know they were trying to be helpful but all I wanted to do was get out of there.

Well I eventually made my choice and as the food started emerging, I got smells coming through that were disgusting to my messed up nose, and started to feel sick. Once my meal was put down in front of me it could have been dog food for all the appeal it gave me. I gathered what little strength I had and put a forkful of food into my mouth. I wanted to gag it was so bad but instead I forced myself to swallow it. However I knew that that was enough for me. No way was I going to have another mouthful.

The afternoon continued with everyone commenting on how nice, tasty, enjoyable, their food was and I tried not to feel resentful, it was my mothers birthday after all. When the waitress came to take the plates away she looked down at mine seeing I’d hardly touched it, and said ‘was the meal not to your liking madam?’, I replied as politely as possible ‘yes it was fine I just wasn’t that hungry’. Maybe I was being paranoid but I was sure I heard her tutting under her breath as she turned away.

Finally it was over though, and I couldn’t get out of there fast enough. Oh, and one passing remark really made my day! My cousin said to me as I stood up from the table, ‘wow you’ve lost a lot of weight you’re really skinny’ I think it was meant to be a compliment, but I felt like saying yes that’s because I’m not bloody well eating! But I kept it to myself.

So there you have it my friends. A day in the life of an Anosmic. Pretty raw don’t you think? That day has always stayed with me but I also feel like I’m healing from it, recovering…not physically or completely, unfortunately that may never happen (mmm think I’ve mentioned that before). But mentally, up in that crazy head of mine, I do believe that something good is starting to happen.

Long may it continue!

Do you have something in your past that you are finally healing from? If you would like to share let me know in the comments.