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.

Thursday, 1 December 2016

Highs, lows and more lows

I thought, when I got those first few precious whiffs of detergent a few weeks ago that all I had to do was stop eating high sal foods and everything would be OK. The last week since getting back from Germany has proved things are going to be a lot harder than I imagined.

It's been far from plain sailing and the biggest challenge has been the inconsistencies of the results and dealing with my own self doubt. I even started to wonder if everything was just in my head but I gave a myself a good talking, pointing out that I can smell more often now than ever before and that my stomach is largely behaving itself.

I just need to accept that a total cure isn’t going to happen overnight, although this is perplexing and there seem to be many possible reasons.

  • One reason could be that I simply have a build up of Salicylates in my body and I have no idea how long they will take to work their way through
  • Another is that I could be hyper sensitive so that where I've been eating low sal foods such as leeks and brussel sprouts as opposed to a total 'no sal' foods it’s still too much for my system
  • It could also point to cosmetics, toiletries and washing products as I have yet to change products and I'm still getting to grips with label reading.
  • It could also point to sensitivity to other chemical such as amines which are present in aged meat, and as I understand its standard practice in the UK to age meat this could be very difficult to overcome.
The more I search the internet the more information I find. Australia seems to be at the forefront of research into food sensitivities if the internet is anything to go by and I found a great website called fedup.com.au. Again, can't vouch for its credentials but I have found a lot of useful information on there particularly in relation to other chemical sensitivities and something they call the FAILSAFE diet.

I'm going to start a resources page where I can note down any useful links like that all in one place.





Wednesday, 23 November 2016

Worth it for the long run

I'm back home from my trip to Germany now and for the last three days I have watched my colleagues eating some of the most delicious looking food and drinking copious amounts of wine while I drank water and ate grilled, unseasoned chicken or fish and fried potatoes or boiled rice.

But it was WORTH IT!!!

It got on the underground and was overpowered by the smell of detergent and cologne and my stomach has largely behaved itself.

The first thing I did when I got home was had a meal with vegetables, from the allowed list of course, and rustled up a very quick omlette with sautéed Brussel sprouts (in sunflower oil) and a slice of Gouda cheese. It sure tasted good and it SMELT GOOD too!

My goal now will be to stick to the allowed list and see how I feel in a week or so. Then start introducing things from the moderate list one by one. The challenge will be to create interesting meals from the allowed list and when I do I'll jot them down on a recipe page.

Sunday, 20 November 2016

More dots connect

It's funny isn't it how a little piece of information can go a long way. Like realising that what you thought were totally unconnected health concerns are in fact totally connected.

I wasn't planning on giving a day by account of my trip to Germany but I woke at 4.45am this morning with a nose bleed. My brain started to whizz and make connections and I felt compelled to write.

Needless to say food-wise yesterday was a challenge. My food day looked something like this

0630 Slim fast shake (more of thin on a later post) before going through security at stansted airport

1000 banana on the plane

1200 need food at Berlin airport - forgot I'd bought 2 boiled eggs and another banana at Pret in stansted for this very purpose. Only one food outlet in Berlin schoenfeld airport selling all sorts of yummy looking, filled breads and salads that I'm certain can't eat. Narrow down choice to couscous (no way of checking what it's make with) or pretzel filled with sausage and sliced gherkins and , it turns out, mustard.  Opted for dangerous pretzel and eat cautiously.

1600 still feeling good, arrive at a hotel. Greeted by welcome platter in room of dried fruit, nuts, strawberries, physalis **sigh**. Nibble on least healthy looking thing,  chocolate coated rice crispy bar, just on pricinple. Thanks to newly acquired smell, realise on first bite it has coconut but nibble away regardless, cavalier from surviving the dangerous pretzel. Also eat the 2 boiled eggs I remembered I have.

1830 welcome reception with canapés, prosecco and juice. Steered clear of everything including drinks which of course immediately makes you the attention of your host who feels totally inadequate.

2000 traditional German appetisers - dark bread (avoided), white bread filled with cheese (fine), dripping (indulged - trust me that this pot of lard found in Eastern Europe is heavenly - think thick salty butter), sliced gherkins (risked a few), little meatball thing (risked one), spicy sausage (avoided), glass of local white (half a dozen sips). At the end of all this my host explains that the delicious tub of lard I'd been spreading liberally on my bread was fried with apples. Yes, my mind churned at that moment. It's one thing to take a calculated risk on what you can see but if I'd known I would have been a little more circumspect.

2100 wine tasting - are you kidding me!!! Avoided.

2200 ok here's where I sort of lost the plot. As soon as our waiter described what was coming I knew I was in trouble but I'm so infuriatingly British I still didn't say anything despite the fact that there were 2 pescatarians and 1 vegetarian in the party, who, I might add, is only vegetarian for 40 days of the year!!  Potato dumpling (safe) with beef cooked in a raisin sauce and red cabbage stewed with apples. And yes, I ate it rather than make a fuss.

2230 local herb liquor to finish - took a sip to be polite (damn my Britishness again)

Still feeling okish at this point but worried, justified, as when I got back to our hotel and finally into bed I caught sight of the tell tale football belly. I hadn't been hurting because I was wearing comfy clothes. Was it the Salicylate apple/raisin/beef potion I ate last thing or an accumulation of all my transgressions?

It did one thing for me. I'm resolved to have a word today. It's really no biggy is it to explain I'm sensitive to almost all fruit, veg, seasonings and nut and please can you just make me an omelette or something.

The final word on this post, the nose bleed. I've suffered from random nose bleeds since I was a child and never had a logical explanation. So why would I wake up to a random nose bleed now ? Could it be the Salicylates? I'm betting it could.

Saturday, 19 November 2016

Disaster!

On Tuesday evening I went to gym on my way from work, came home, had some dinner followed by a shower and then decided it was time to deep clean my shower cubicle.

I sprayed all the tiles and screen with Viakal and bathroom cleaner, left it for a few minutes then got in and gave it all a good scrub. Now, I have a quite a tiny bathroom with no windows, just an extractor fan, which was on, but I had a sense at time that I should probably wear a mask or something. My sense of smell was not hugely acute at this time so I wasn't being overpowered but I thought that would be more sensible given the confirmed space I was in.

About half an hour later I started to develop a football belly and knew something was up. I realised at that point as well that my sense of smell had gone again.

I had a quick look through the list of ingredients and couldn't tell if anything was from the banned list so started thinking about what I'd eaten. I had made a big pot of soup the night before which I'd been fine with. I'd fried an onion in sunflower oil, added a couple of chopped carrots and a stick of chopped celery and a couple of cloves of garlic. To that I added some diced chicken thighs, diced peeled potatoes, a handful of sweet corn, a tin of butter beans, a few cups of water, salt and made some dumplings out of self raising flour and water. At the last minute I decided to throw caution to the wind and added a shake of dried chilli flakes.

I'd had a couple of bowls of this (it was delicious by the way) and was fine. When I had it again on Tuesday night there was a lot less of the soup so I thought perhaps that I was being affected by the 'moderate sal' vegetables i.e. Onions, carrots and sweetcorn. I thought that maybe because I was eating more of the veg to compensate for the lack of liquid that I'd just reached threshold. And in fact this could still be true.

That night I was in agony. My stomach pains woke me up in the night and I couldn't get back to sleep. On Wednesday  morning my smell had gone again and my stomach was showing no signs of recovering. I decided that for the rest of the week I needed to eat clean, avoiding any borderline foods until I felt better.

Late Thursday evening I started getting flashes of smell. Interestingly when this happens it's almost always synthetic smell I detect first like perfume and detergent. It's pretty disgusting actually because it can be really overpowering.

It's Saturday now and it feels like I'm getting back to normal. I had a Typhoid injection yesterday for my trip to Goa next month so I feel pretty sick today with a sore throat and I woke up stuffier than usual so I don't know whether that's the jab or salicylates.  My stomach is much calmer but feels bruised, if that makes sense.

Psychologically I feel myself becoming more obsessive. What started as a 'suck it and see' approach has led to a far more cautious approach. You kind of get used to constant pain and discomfort but when things improve you can't go back, especially when you know it takes several days to work through your system.

I've now cut out Rooibos tea which was my 'go to' decaffeinated drink but isn't on the list in any category, and drinking hot water instead and the occasional decaf coffee. It's not just something now that's quite interesting. I need to make myself well and figure out what I can and can't eat. I leave for a 4 day business trip to Germany in the morning and the catering will be largely out of my hands so I don't know how this is going to play out.

What'll be interesting to see in the long term is how much I am affected by cleaning chemicals and how much by food. And, the upside, if the cleaning products turn out to be a major contributor is that I can finally justify getting a cleaner!