Allergy 1.

So, turns out the slightly misleading advice that I am allergic to anything that has a smell, given via the phone from a nurse, ain’t that far off from the truth.

I love the smell of stones. A smooth smell; grey and granitey and does not make me sick. And the sea; salt and fresh. And nothing; I love the smell of nothing.

Everyday is a rollercoaster.

Perfume, hairspray, aftershave, deodorant, fabric conditioner, etc – all the things people use day to day make me feel nauseous, light headed, spacey. A little whiff, and I start to feel sick. I can go from articulate to unable to type, spell, think, move. Sometimes I get sleepy, very sleepy, now gonna collapse sleepy. A bit stronger (that means if I stand in an average crowded room as opposed to next to one person one to one who doesn’t wear much scent), and I feel very sick. A lungful of pine cleaner in a shop, or cinnamon and I start to throw up. I feel drugged. I feel weak. I get weepy, or irritated. Conversely, some of these substances have given me insomnia, reversed sleeping patterns or nightmares.

I’m patch tested positively allergic to pine. I am allergic to balsams and perfume. Allergy pine can mean allergy to cinnamon, citrus oils, chilli, etc.

After a years wait (everything in the allergy world happens after a years wait) I saw another doctor who said – ok, your allergic, but I think you are also intolerant of salicylates. So, that might mean there are foods I am both allergic to and intolerant to. It might also mean – there are foods I am not allergic to, but am intolerant to, and which make me ill anyway.

Salicylates increase histamine in the body. They build up over time – meaning you could eat a bit and be fine, but eat a lot or over several days and you are poorly. They can be ingested or breathed in.

It is a natural substance. So; although I am allergic to perfumes that are artificial, I am also going to react to chemicals in food that are natural. I can say from experience that both make me ill – and I can tell which is which sometimes by the reaction.

Aspirin is salicylate It has taken 17 years, two trips to casualty, many inhalers, several chest x-rays, and 17 winters of getting breathless, plus rather a lot of doctors opinions, and finally one test to confirm I have asthma. The asthma was made worse by taking ibuprofen (salicylate again) daily this year. I don’t feel sick taking it, but my chest gets tight, I feel very weepy, and I get wobblier than usual.

It made me suspect I could be sensitive to salicylates too.

I am allergic to chilli. However, I may be allergic to most other spices too – or maybe I’m intolerant or both. It could help explain why tiny amounts of spice make no difference – but mild to strong spice makes me ill. Now, most herbs have salicylates (parsley and saffron are very low in it). Mint is high in it – and I am not allergic to that, but it makes me feel odd, but I thought an allergy doctor would say – a bit odd is not enough if a reaction for me to be interested.

I have been on a low salicylate diet for a month now and I think they possibly make me feel like I have the flu, make my muscles ache more.

Just for laughs – steroid inhalers and antihistamine tablets seem to make me worse. No matter what the doctors say – if it’s a rare side effect, no, sorry it IS likely I’m going to get it.

A low salicylate diet is low in a lot of fruit and vegetables – but it is easier to say to people a doctor is making me do this, rather than – I think I’m sensitive to food chemicals and my proof of that is instinct and internet research.

It is both a relief to find another possible clue to feeling better – and absolute torture. If I go on a bus (perfume, newspaper ink, cigarette smoke), and then cross the road (traffic fumes; petrol contains perfume), and then go to work (aftershave, photocopying, folders, post it notes, computers) – well for a start most of those contain pine, lemon, or mixed perfumes, and they all make me ill.

It is mentally exhausting avoiding what I can and then having awkward conversations (no, allergic to perfume includes what you are wearing, not just what is on me), and coping with choosing between isolation and health every single day.

I am balancing this with the progress I get with acupuncture, and the various trials of medication that usually end with me going – wow, that was a tiny bit of medicine and I still get wheezy/spacey.
Magnet therapy may be helping – but if I wear them for seven days I get hives, and flu feeling. Maybe the hypoallergenic plasters they come with are not so.

Having a massage is great – but if they burn oils or there is citrus oil in particular in the pillows on the towels you lie on – well, then I feel sick.

Most organic minded stores – use pine, lemon, cumin or cinnamon – and I can’t go inside.

The lengths people go to feed me are so much appreciated. But, if they are wearing any scent at all, then it has just as much effect as eating certain foods but politeness means I often hide my reaction.

A friend kindly gave me a table recently, and sitting in the van with the table, I discovered a van that has been lined with pine internally is a scarf over the mouth home time, gosh couldn’t have prepared for that at all.

I will no longer go to people’s houses that are freshly painted, until the fumes have gone – because it costs me too long in bed. Ditto, being places that are smoky. I want to be as well as possible – and this means having to be more open and honest about the effect these things have.

I will continue the diet till December, mainly at home. If I eat out, then small amounts of salicylate I ignore; but this is why I may not eat as many fruits and vegetables as I used to.

The thing that keeps me going in this partly, is the amusement that it is the NHS that has given me the most controversial diet – even in the alternative world it’s controversial.

Happy for any queries – apologies in advance if my answer is complicated. As soon as I can find a use for all this knowledge; well that would be great : ).

Excuse me, I'm reacting.

When I was a little girl, I adored eating plasters.

What? Shouts everyone who knows me, But she's allergic.

Precisely. The smell and taste of that resiny stickiness to me - oh man, I can remember it so well.

If it weren't so russian roulette - I'd chew one now. I mean I adore it - that piney medicinal smell. If there is a pine tree - I want to bury my head in it. It doesn't matter logically when I get near. It even doesn't put me off when I start to feel very sick. (So I tell myself - Cover your mouth and nose now, and walk away from the hypnotic tree. See, and you thought you were the weirdo). The addictive quality of an allergen is just one of those, do your genes always want you to survive and be the fittest - it'd make more sense to hate an enemy full stop.

Right, moving on to my next point - yep, allergies and dating. Is there any easy/romantic/ho ho ho look how suggestive I am way to say to someone you fancy - actually your shower gel could potentially make me throw up. Lime, to be precise - and it took me a while to identify what it was, and no matter how much I liked the smell, it did not have a good effect on me.

Yes, on the other side, apparently asking someone to change their toiletries is well, not a hard thing.

But, it leads me onto a wee experiment I would love to test. See, one of the first signs I have when I have started to REALLY react to an allergen is this - I suddenly realise everyone in the room is annoying me so, so, so, so much. I have seen me shout, cry, and garble nonsense in this state, until I go - oh right, going to spew now, guess I should get on with that bit, leave the dramatic mood swing till later.

Now, what if you were able to identify and correlate that and somehow prevent arguements induced by the first stages of allergy.

What, what is that - yes, it's Relate phoning me to thank me for my idea - as it would cut down on their workload.

Man, that was another brilliant idea that just sounds a bit, oh, I don't know what on paper.

Like I was crazy or something.

Allergic to Christmas

After having a very strong allergic reaction to cinnamon in Napiers this week (I was in for 5 minutes, and they have very Christmassy scents, by the time I got to work I had to be sent home as I was very ill and close to throwing up), I am asking everyone to be on the look out for other shops (I already know oxfam has cinnamon candles, and tesco). I will be reissueing my food list - but please could people be aware and make anyone I may visit aware that I am now HIGHLY allergic to perfumes - and may be too polite to say that what you/they are wearing is making me feel sick. I may react to ANY strong scents, especially christmassy ones. Candles, pot-pourries and air fresheners will not only make me feel tired and nauseous, but could increase my chance of collapsing. Thank you - that also means I cannot use any essential oils or eat any spices.
SPICES = cumin, chili, coriander, turmeric, saffron, curry powder, cayenne, etc.
(The only one I am uncertain about is ginger).
It seems to be the amount of spice I eat that is the problem - and a trace of spice, or small amount in a packet may be OK. If in doubt - leave it out (this includes black pepper). If you have cooked something - then leave out the recipe or packet for me to read - it saves both parties the embarrassment of me being able to taste something in the cooking, and then wondering how to ask you, especially if there are any guests around.
The same seems to go for most herbs - the main suspects are Rosemary, and Thyme. My suspicion is that several of the main chemicals in pine (a-pinene, b-pinene, limonene) are in many other herbs and spices, and may mean they are a small risk -all I really know is I am WAY more allergic than I was before.
Fresh paint or varnish will make me throw up - if a person's level of allergy increases - it is possible for them to develop anaphylaxis - and that is why I am being so cautious. However - the worst I have had is being sick - I need to be kept warm, and put somewhere comfy if this happens. If I collapse, well er, that's another bit of illness, not even related to allergy : ).
By being this observant and vigilant - I have achieved a level of physical stability I didn't know I could - and although this last year has been a very difficult journey of having to adjust to rapid lifestyle changes - chances are I'm more at peace about having to give up so many recipes, and avoid so many places than it will be for my friends.
Believe me - I know it is difficult when you want to cook fancy and your friend needs plain. As an avid cook I appreciate this.
If I do visit you, or go to the cinema or church with you - please do not take offense if i sit away from you - it does take me longer to recover if i have been breathing in perfume (and that includes fabric conditioner), and it does make the ME/CFS worse. Try and spend a day smelling everyone and everywhere you go - then calculate just how taxing that is on an immune system that thinks these natural substances are poison. From computers, to shoe leather, to toothpaste to furnishings (new houses, and new furniture make my head so fuzzy, my mood so wobbly, and can take hours of sleep to recover from), every single one of these are related to pine.

Roll on my wee oak fired cave in the barren hills, I shall eat my fish and potatoes and think of you all there.