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 : ).

Nobbly Bobblys

I can assure you there is such a thing. It's strawberry in the middle, and is covered with chocolate and hundreds and thousands of hundreds and thousands. I ate half a one the other night, with future MIL, their family dog, and 007 on the TV.

Today, the emotion and energy that has been going up and down yo-yo style goes along way to explain why mid teary discussion I clonked over in Asda. Several things can trigger a full collapse for me, and I think I hit several in the space of an hour. Absolute full marks to Asda (and my loved one - because he's never actually seen me clonk over, and he chatted away to them like he handled this all the time), because in the whole history of kissing concrete/grotty floors/wood I don't think staff have ever been so calm and normal.

They shut the aisle, very discretely. They got me water, they made no extra embarrassing fuss, they offered a first aider, and they waited patiently. They even offfered a screen. Attitude speaks volumes - I think that is the least embarrassed I've been - because I was told after that the entire row of checkouts was agog at my fall against the freezers, but not once was I aware of it. Then they got me a chair, wheeled me to a checkout, where they'd already put my shopping through, and took me out to get the taxi they had ordered. The relief at not having to laugh at anyones 'oh my a lady has collapsed and now we must joke her better' jokes was immense. I was too ill to talk, and I didn't have to do my chat brightly to make everyone else feel better now routine.

In contrast to some of the most hideous post collapse scenarios you can imagine - well, it was so low on the trauma scale it did not register. Several collapses in hospitals I've been in, are in the top ten most horrific things I have had to deal with in my life.

Coping with good care after poor care is ironically a lot of why I am tense today anyway. It is destabilising when people you love either leave, or emotionally decide not to care anymore. My past involves some hard core verbal abuse, and questionable treatment from people in caring roles. The scars that leaves are interesting - you never quite know how deep a hurt goes until someone else gets close enough to try to kiss it better. I am both enjoying a time of blessing, and also wanting to run away quick in case something else awful happens. It's such a relief when people are reliable - but it shows such a sharp contrast against the lacking of care and trustworthiness in some people I have met, that it actually puts me out of kilter whilst I adjust.

I have met nurses who have shouted at me whilst I was on the floor, demanding I stand up. I have had two close friends walk out a room during a party because I had collapsed dancing, and they left me on the floor without asking if I was ok. A nurse decided I needed my family contacted during observations when I collapsed and her concerns were quashed. I told a doctor I'd nearly collapsed in front of moving traffic (great big truck, and me mid road), and she was not concerned in the least. Bizarrely, in a store where they like to pat you on the back pocket, I got the best looking after, and even got the bonus of no added humiliation to that particular oopsidaisy.