Saturday, 19 August 2017

Now you smell, now you dont.

If, like me, you experience occasional bouts of smell, you'll no doubt also share my mixed emotions. Just as I am 'dealing' with not being able to smell I'll get a sudden whiff of freshly cut grass and I'm immediately transported back to my schooldays and reminded of endless days spent in the park over the summer holidays.

The thoughts don't stop there. I'll remember exact situations, lying down in the grass, worried I might have ants crawling in my hair, tennis courts to the left, river at the bottom the of hill, my best friend to my right. We've been making daisy chains which we're now wearing around our necks. Finger nails carefully split the daisy stem to allow the threading of the neighbouring flower. Its taken all afternoon, but isn't that afternoons are for when you're twelve.  Now we're seeing who can make the loudest noise with a blade of grass between our thumbs, blades carefully selected for exactly the correct width.

As I lost my sense of smell when I was about 18 or 19 most of my smell memories relate to childhood or adolescence. The brief periods when I've been able to smell since then  have probably been too brief to really ground into a tangible smell memory like the ones of my youth.

This doesn't mean it's not exciting when it happens and at the beginning of this week I had a few spells. As I came downstairs I smelt dinner, a distinctly savoury and slightly spicy aroma that filled the air and my nostrils. Like a wine taster I sucked it in and let it circulate while I appreciated this moment, knowing that it was probably fleeting. By the time we came to eat my smell was gone.

It's during these moments that I'm reminded how important it is to my well being to be able to smell and how much I value these spells. My friends still laugh when I can suddenly smell. It's so normal for them to be able to smell that they see my behaviour as almost childlike. The delight I take in smelling the most mundane things and the manic behaviour from knowing you need to seize that moment before it disappears like a dream.

My salicylate experiment has slipped since the new year but I'm still convinced that food is the key to both my anosmia and my IBS. For me it's simply not practical to continue with the elimination phase but I am still very much trying to identify food triggers and I haven't ruled out the possibility that salicylates could be the route of one problem whilst something else the route of the other.

For now at least, I have identified that coconut (moderate sal), sesame seeds (moderate sal) and chick peas (low sal) cause a severe IBS reaction. Whether I can tolerate in smaller quantities remains to be seen but I think it's interesting and somewhat puzzling that none of these are particularly high sal. What exactly is influencing the ebb and flow of my smell remains to be seen but I am experimenting with sugar so watch this space!

A week in Goa

Bit by bit this journey has become more about my IBS than getting my sense of smell back. I think a lot of that has been to do with the fact that I have been living with WITH Irritable Bowel Syndrome and WITHOUT a sense of smell. When pain and discomfort is removed from your life it is literally a weight off your shoulders and the effect is immediate. When something is added to your quality of life the effects can be more subtle. Living without a sense of smell for over 30 years has become a way of life. I won't say I have accepted it but I am more accepting and I have learned to adapt.

I'm lucky enough to have been through phases where I can smell for brief periods, be it from a short course of steroids or other, somewhat less explicable circumstances. I'm past that stage where I find it critical to attach smell to significant moments in my life, for example when my babies were born. I've got used to not having that added dimension of emotion that is attached to smell memory and it's made the pursuit of an answer less important than just getting on with it. I expect age has a part to play as well.

That's not to say I don't have my moments, like when I discovered salicylates and started this blog. I daresay if I had made this discovery a few years after losing my sense of smell I would have been more committed.

Last Christmas when I was still in the 'gung ho' phase of elimination I was not about to let a little holiday to the Indian sub continent get in the way of my low sal experiment. Naturally I was going to have to make certain concessions but the last thing I wanted to was to feel unwell as had so often happened on holiday so that was a good incentive. If I could smell my holiday then that would be an added bonus. I didn't have the option to cook my own food so this was going to be a challenge.

I started in earnest and joined a Facebook group to get some advice on what to pack for the journey. I packed rice cakes (sesame free), boiled eggs and pears. Once there, I bit back my embarrassment at having to ask about ingredients and actually found it was a great way to talk to people, and staff at the hotels and restaurants were very friendly and obliging.

By and large I found my Indian diet pretty good for me. My IBS causes severe constipation and painful stomach cramps, so not withstanding a few episodes of diarrhoea  which I put down to dheli belly, I was pretty healthy.

So what exactly did I eat? Well, breakfast was usually a couple of boiled eggs with a slice of toast or a few pakoras if I could identify the ingredients reasonably easily. Then I'd sometimes get an omelette to take away and make an omelette sandwich for lunch. Dinner was often roti and dahl - filling, tasty, cheap and most importantly, safe! Sometimes we'd grab some samosas and potato pakoras from a street food stand and we discovered the most incredible snack which was a stuffed deep fried chilli sandwiched in a soft bread roll and doused with some indescribable but very necessary cooling sauce.

I decided to pick a few things to try and avoid that would be easy to identify and therefore avoid so I opted for coconut and tomato. Given that Goan cuisine is known for using both in almost everything this did illicit quite a lot of mirth from the restaurants we visited. I didn't really know at this stage if either were danger foods for me but as the week went on I let the tomato slide as I realised I'd been having it in the dahl and figured that providing it wasn't the main ingredient I was OK. I did continue to avoid coconut and as I'm writing this eight months after the event I can happily report that that was a sensible move as it turns out by body hates coconut. More of that in a future post.

I think it also helped that I was drinking gallons of water because it was so hot. Water is a wonderful way to dilute whatever is in your system and whenever I have a reaction to something I've eaten, I try and drink lots of water to flush it through as quickly as possible. So far it's the only antidote I have to an attack.

Of course we did imbibe in a cocktail or two and I was careful to stick to white spirits avoiding the dark spirits and fruit mixers. I've found that gin and tonic is a safe drink and as I seem to be OK with lime I was able to enjoy the freshly made lime and soda, which is interestinly offered with salt, sugar or both.

Returning to the UK I found myself really missing Indian food so I have incorporated some new Indian recipes into my diet and have found an excellent book called Fresh India by Meera Sodha.

Friday, 4 August 2017

Leave of absence

Apologies lovely readers for my leave of absence. If the truth be told I became rather despondent over this journey. What had started as wanting to share a eureka moment, rapidly turned to feeling like a fraud. Plus the low salicylate diet is incredibly difficult. The most challenging thing has been not having any clear signals to spur me along. Results have been inconsistent and confusing and let's face it, if you have to change your entire way of eating you need to feel you are getting some sort of reward for your efforts.

So, why I have I got back on? Well two reasons. I got a new subscriber alert yesterday which thrilled me no end. This is after all a rather niche subject and to have someone find my little blog amongst the huge haystack that is the net was very exciting. Not having logged on for several months I decided to read through my posts which is always something of an outer body experience, like reading someone else's writing so I found it quite a revelation to read that I had made some progress. Sometimes stepping back is useful for getting a little perspective. And as my main aim in writing this blog was to diarise my experiences and give me a window into how I felt at a particular point then it is still useful.

When I got to my most recent posting I saw that two people had actually commented and asked questions. One in January and one in April and it's now August! I truly felt awful that these two people had not only taken the time to read my blog but had found it useful and reached out and I hadn't bothered to reply. Well I'm perhaps being a little harsh on myself as I hadn't seen my Google alert but nevertheless it sparked a sense of responsibility and as I'm off work at the moment recovering from an operation there seems no excuse not to get back on here.

I warn you though dear reader, that the last seven months has been a tangled web of apathy, confusion, despair and occasionally a glimmer of hope. If that hasn't put you off then welcome to my world.