Allergy 2.

Here are some of the issues - I was told by an allergy nurse, I was not covered under the DDA. Thankfully, my work don't think like that - however during the medical, I made my allergies clear. The stuff I'm allergic to however - is what people wear, everyday. So, whose rights win - can a workplace say - well, we can ask people not to wear scent, but they have a right to say no?I can see both sides of the issue - I really can. I can understand people get offended. I am fully aware - it can't be controlled because everything is perfumed these days. I know - I get on a bus, and I wear a big scarf so I don't feel ill;everywhere I go I can get ill simply by breathing. But, there are workplaces in America and Canada who have gone perfume free, totally. Partly so they don't get sued.

Anyone with asthma, migraine, MCS, fibro, etc could also be made ill. I am aware every meeting I have, of just how much I want to challenge people's thinking, not just on the allergy issue. On, why when I asked for what I needed after the first collapse, it took weeks for action to happen - then we had collapses 2 and 3. I think about how I should not have had to chase up my own PEEP. And how scared I am - I am scared to listen to lots of people discuss solutions, and that I may have to try them to make them feel better; or maybe that is the gracious thing to do, that it will make people think,and come uo with viable solutions. That I worry I will take any solution they offer - even if it means giving out a poor message about how disabled people would like to be fully accommodated, not be made sicker by the workplace, and not treated like a social pariah for needing an adaptive environment. i.e. the how about we put you in a desk away from everyone else solution.

I want to advocate for me - but I don't want to say things that make it harder for other people in the future. And preferably without pissing people off. Yes, the whole cake and eat it scenario. The thing that really struck the heart of fear in me was - well, we will have to consult with our experts. What experts?

Allergy and the DDA

This post also posted on Ouch website - if you know anyone else in same position, I would so appreciate them getting in contact. I have a splitting head, and the shakes again, and I've already had to take time off recently as a result of so many reactions.


Feeling pretty low right now. I have already met with the union and the managers where I work, as I work in an office, and I am allergic to perfume/aftershave, pine, cinnamon and citrus oils. You would not believe the hidden dangers in an office. The cleaning lady who sprayed all the desks - I collapse, and get sent home in a taxi. Then, the perfume sprayed in the toilets - I get sent home, and boyfriend finds me outside the front door nearly collapsing and vomiting, and I go home in a taxi. Then the cleaner who didn't know my manager had told all the cleaners not to clean till I'd left, sprayed the desks again. Mild nausea and tiredness. Phew.

I have had so many meetings and everyone got told - don't spray stuff in the office. So, when a guy whips out a can of lemon cleaner and cleans his computer screen today, I ask my colleague to ask him to stop. So the guy sprays more, and in desperation I go over and say, please don't, I'm allergic to that (not a good move, but I was feeling desperate).
So, I get wheeled out this time by a first aider, so I don't collapse, and they call my fiance and he takes me home -in a taxi the work have paid for (a small triumph), but emergency contact or not - fetching him could be a bit awkward, what with it taking three months and still we have not even got the basics of - if you spray in this office, then fairysparkle will have to go home, and may end up going in an ambulance, not a taxi.
It's mentally draining - is anyone else out there had to tackle anything like this. It is very very hard going in everyday - I've never been so allergic in my life, and it takes hours to recover.

Very Clever People

Dear Working Tax Credit

I work next to two very nice people. They are called C and D. They rock. They make me laugh. They have little chats with me, and they say, oh, yes, this is how you do this and that. They are kind. They are a bit loony. They are clever.

So, from now on, I am going to no longer phone you to find out what is going to happen to the X thousand pounds you put in my account, despite nearly doing it once, and then realising you shouldn't have, before then doing it for real. I am not due any of it.

C and D said - get that money into a high interest account now. So, I moved it, and am open to sugestion if there is any better account I could use instant access. So, feel free to take months to decide what to do. Heck, take a year - I told you if you didn't get it back by april I'd spend it. Well, maybe I won't- maybe I'll invest it.

You loonies. Feel free to make the same mistake again.

Work; how to have healthy relationships.

Here is a massive hint;

If someone phones you at work and asks to speak to the union rep, and you don't know where they are, and you offer to help, and the caller says, I really need to speak to a union rep, and I don't want to discuss my situation as it's a health matter - it may not be in you best interests to

a) speak to your colleague within earshot of the phone, and say - what a bitch that caller is.
b) then discuss word for word everything you have discussed with the caller with your colleague.
c) do nothing about the enquiry.
d) when you get back on the phone and you speak to the caller again who asks for your name, and your managers name, and then pretend to transfer the caller, but then not really.

Well, if that's what you would do - then at least try and work somewhere where they have no dignity at work policy, or an HR department who would go ballistic to hear one of the staff is not clever enough to say bad things without putting the caller on hold first.

Thanks to Elizabeth, J and J and M, who are at the forefront of my mind, as I pretend they are sitting next to me, as I have to gather up my shaky self, and then speak to the union regarding the matter I neede to discuss in the first place, preferably without - what a bitch you are stuff in between.

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 : ).

Green Stuff

It was my birthday in October. It was a day when my dad was not here, or my mum. One of those – I really hope they phone days. The kind that make death very confusing.

Of course they’ve gone. But maybe they could visit.

I got a tree dedicated to Dad. If he’d had his way, he’d have repopulated forests.

His commitment to challenging Green Issues niggles in my mind.

This year, I have started collecting stuff to recycle again. Boxes, and kitchen rolls and cardboard can go to schools and afterschools to turn into junk modelling. Glass can accumulate till I get it to the bottle bank. It’s a mixture of beginning to save stuff and also think more aware.

The next year I think I’ll go greener in choosing an electricity supplier. I have started reading the labels of where my food comes from. I would love to buy food with less packaging. I’ve started thinking about where my clothes are bought – how do I go more ethical, but still afford them?

I asked at Dad’s funeral that people remember his ideals, and make changes. If you have, in any way whatsoever, even a little bit, please can you let me know? I want to have a long-term commitment to changing my lifestyle as far as it can go.

My goal is to start making crafts to sell on the internet that long term would be make from as many recycled materials as possible. The media I like to use are wire, beads, felt, silk and paper. This year I’m learning more silk painting. One day I’d like to make paper from scrap paper by hand. My company will be called Little Fires, and thanks to J, already exists even though I haven’t sold a darned thing. Further details will follow.

Sliding Doors Wish

I was asked this week if my fiancé J and I had ever had a Sliding Doors moment.

Well, we did. In 1991 I moved to Glasgow and started a degree in nursing. I did not know at that point that the seeds of becoming chronically ill had started. Ditto not knowing the whole several major relationships, moving of houses, getting married, getting divorced, getting homeless, and getting a lifetimes worth of misguided prayer and help along the way, in amongst a glorious backdrop of Good Friends, and Angels and Fantastic Family that have kept me sane/alive/me. You know the whole bit of sand in your oyster to make nitty gritty painful pearls kind of stuff.

In a basement café that served questionable soup, ham rolls, millionaires shortbread, etc (with the kind of compassion wee freshers really need in big bundles of warm-jumpered kindness) I ate my lunch in the Crypt from day one as a student. I met A there – the start of 7 years of confusion, tempered by his walking my path of descending into I’m Very Sick Now, and worsened by his inability to be honest about our future.

I was regularly dressed in loud shirts and wobbly hats. Type of student ; The Loopy One.

Sitting opposite me, maybe in a corner, maybe next to me – my future second husband. The man who makes me feel there is true friendship in the opposite sex; true kindess and true love. A real good bloke.

So, what you do you see is you take a recently divorced woman, who then met Another who said, 'I really love you, marry me, oh right when I said marry me, what I meant was, er, what?' In other words – a woman on the rebound rebound. Take her with her history of five significant boys and her complicated allergies, and wobbly legs (like the hats, but less furry), and then ….ta da da – let her meet J on the internet and get them engaged in 6 months.

Now, add to this that J is fresh on the dating scene, lives at home with his family, and who is bursting with romance – and muddle it up with a little let's get married now stuff, coz life is short and we’re mad about each other.

An alpha and omega couple; my last boyfriend and his first girlfriend. I adore J, and I know he does back. It just makes me smile that as a fix to a broken heart several times over – well this is the kind of scenario to make the hair go white in terms of sensibility.

We undergo marriage preparation classes this week. The minister burbled around the whole are you a bit crazy/sure situation. J apparently has not much experience – but puts more into a relationship than any man I’ve been with. So, yes we will wait to do the classes before getting our wedding date confirmed by the minister – because something well bad would need to happen to make it not happen.

My wish for you is this.

It comforts me to know, and amuses me, that somewhere in life I had already met someone even briefly, who later on I would love. I had lunch with J without knowing it during the first few weeks of being in Glasgow. I didn't meet him, but I could have.

In J is stored years of goodness. Years of being a loyal brother, son, and church elder has formed a core of love inside that is musical and creative and deep and funny and contented.

Put us together – and the core of me that is ready to keep going, to try new things, is creative, is practical, is affectionate – means that J roots me into the ground, and I lift his head to see the sky.

So my wish is – that the people, the situations, the ‘what ifs’ in your life would re-emerge. That the ‘missed’ opportunities would slide back towards you – and that you would experience the bits of life you need to be reassured that you will become the most you you could become in this lifetime.

And I hope that they arrive in your life – nice and sparkly, and soon.