Uncomfortable conversations about comfortable underpants

 

Yes, these are The Comfy Underpants. Like men's underwear they come in only 2 colours: black & white. No pink, baby blue or candy stripes. Black & white, that's it.

The other day I was at my physiotherapist - my wonderful, fabulous physiotherapist who is absolutely the best ever. "Strip down to your undies this time I think" she says...and then we did the usual conversational dance: "Ha ha, I wonder what underwear I put on this morning ha ha". Of course I know what underpants I put on this morning. I might not recall which colour, but I am never wearing any other kind of underpants ever again until they stop making these ones, at which point I might stage a one woman riot. Or start going commando. Given what's to follow, let's not go there.

I climb up on the physio table & turn on my side as I'm directed by my awesome physiotherapist. And casually I say "Oh, that's right, I blogged about these undies the other day" *I just said what???*. "You what...?" says the brilliant physiotherapist. "Blogged. Blogged about my undies, I write a blog, just stuff..." mumbled before quickly trailing off.

In case you missed it, here's an example of a conversation never to have with your physiotherapist. Not ever. It's weird. No good can come of it. I'd go so far as to say it's an example of a conversation to have with no-one. Blogging about underpants is weird. Talking about blogging about underpants is freaky & people will think you are some sort of, well, freak.

"So do people read your blog?"

"Well, my mum does ha ha..." (weakly) "some other people..." Change the subject!!!

We did change the subject, but still it lingered around the topic of underwear..."yes, they do look a bit like the ones...(insert some All Black's name here)...advertises on the television".

Next conversation never to have, especially when you're trying to get out of an awkward conversation already: "Um, who? No, I haven't seen it. I don't watch television". "During the world cup?". "Um, sure, I watched a bit". 

Lies, all lies! I watched the haka, then I went to bed & listened on the transistor radio. For the semi final & final we recorded it & before we had any contact with the outside world the following day we watched it. I don't watch live telly & I watch virtually no recorded telly, except at the moment we're recording "Whose line is it anyway?" because it is tummy hurtingly funny.

After admitting that while you have a television you don't actually watch television, there isn't a lot to say. It's already clear that you are at least "odd". That's if it wasn't already made completely clear by the fact that you wrote about your underpants & that you talked about writing about your underpants.

Just to cement the image I thought the best way to tie it all up was to blog about having a conversation about blogging about underpants. It really can't go any further than that. Can it?

Comfy underpants

This one is a bit more for women who will know what I am talking about. Comfy underpants are a bit of a holy grail among women, so I wanted to share with you my story of finding a pair of truly comfy underwear.

For the uninitiated (by which I mean blokes) it's important to know there are only 2 kinds of women's underwear: 

Granny pants

Granny pants look like something your grandmother would have worn - heck, they look like something she might have made at home herself. They sit approximately 2 sizes too big. They come up over your belly button & extend to your knees. And they are not comfortable. The Bridget Jones movie got that wrong - they just aren't. Mind you the second type of underwear isn't either. 

Ooh la la undies

Ooh la la undies look really sexy on the rack, before you put them on. They might even look sexy on. They are a tiny piece of synthetic (awful itchy nylon pretending to be silk). If we could afford silk ones, I'm not sure we'd escape the next problem: Ooh la la undies feel 2 sizes too small & creep up your bum during the day so you end up having to "discretely" pick them out of your butt crack twice on the way to work, on all of your breaks at work and at least twice while you're at your desk. On the way home you've usually just given up & are ignoring it.

It's about this point some of us have given up & gone for g-strings. I'm not going to give them their own category because they are really just another version of Ooh la la undies for those of us who've given up. G strings already sit right up in your butt crack so once you get used to the fact that they're there it's just a case of ignoring it. You can pretend all you like that it's for fashion, or that it's because you don't want VPL (Visible Panty Line), but really, it's because you've given up.

I gave up once. For quite a while I wore those little things. They do dry quickly on the line. And I suppose in terms of resources you could say that the small amount of fabric required to make that piece of underwear is about 5% of what goes into the granny undies. So, they're environmentally friendly knickers.

Blokes do not seem to have the problems women have with underwear. You see the selection of blokes underwear - it's all the same. Basically you've got either jocks or boxers. As far as I can tell boxers are kind of like going commando & jocks are for the man who prefers a little "support". But they just don't have the same issues women do - it's basically white, grey or navy.

So this time I saw a pair of undies that were clearly for women but they looked like blokes underpants. They even looked as though they had stitched support for a *cough* "package". I walked away (actually I was online shopping, so technically I clicked away). I can't wear boys undies. It's just wrong. But I kept coming back. They looked just like boys underwear. Boys seem to be really comfortable. *I* want to be really comfortable.

After a while I began to cave. I knew. I knew they were going to be properly comfy underpants. So I bought a pair. Just one. Just to try.

You know what I'm going to say don't you? Of course they were comfortable! The most comfortable pair of underwear I've ever worn. And yes, I went straight back online & bought enough to never have to wear uncomfortable underwear ever again. And I don't care if they look like boys underpants. I just don't. I'm going to wear my boy pants with pride!

Sunshine & worm poo

From a few posts back some might remember me talking about my worm farm.

That worm farm has progressed into two - the worms have multiplied plentifully over the months, it's been quite a population explosion. And I've been enjoying putting our food scraps out into the farm, rather than chucking them in the bin. Makes you feel all virtuous ;o).

 It's been a few months & I realised it was definitely time to start harvesting some of that lovely worm compost. Vermicast they call it. All the sites on the net talking about worm farms talk about this aspect with real pride - it's clearly something to look forward to. The chance to reap what you've sown, the fruits of your labours...the prize.

Nowhere on the net does it tell you that worm poo or vermicast as devotees lovingly call it, smells just as bad as poo from any other creature. Pongs. Reeks. Stinks. I thought my cat's poo was pretty stinky some days. Nothing prepared me for the smell of poo from my worm farm.

I'd been so clever - lured almost all of the worms down one end of the bin so I could get to the "compost" at the other end. A few remained, which meant I had to hand pick through the smelly, smelly worm poo to recover them & pop them back in with their cousins (well  they must be fairly well inbred by now. I bet not even those first 1000 worms all came from different families).

A half hour later I had about six litres of "vermicast" & was pretty much over the smell. I had to get out. I had to get out immediately.

It's not a lot of compost - not when you have rhubarb & fruit trees. On the other hand I don't know if I could handle any more worm poo. I'm not really looking forward to next time. But there will be a next time. That insane feeling of virtuousness I get from not putting food scraps in the bin & recycling them into something for my garden demands I keep this worm farm thing going. Bokashi is just not quite the same somehow (though so much less smelly!).

It's not all sunshine & worm poo. I haven't been doing so flash lately & realised one of the side effects of my pain medication is feelings of intense sadness. Well then, that could explain it I guess. You can't have everything. Hopefully it will settle down with the rest of the side effects.

Patience

Today I called Access Ability. I don't know anything about the service, but the disability people said I needed an assessment to see what sort of things we're going to have to think of with me & here at home, to make life manageable. So I called. I left a message for the nice voice on the answer phone since she wasn't there.That all seemed to go pretty normally.

A little while later I got a call back:

"Hi this is ***** from Access Ability".

"Oh hi *****".

*waits for a clue - like "how can I help you" - anything*.....um, I'm calling to arrange an assessment....". 

"Are you a client of ours?" 

*thinks - I've joined so many things, did I join this?* "No, I don't think I am". 

"Is it you who is disabled or are you calling for someone else?". 

*Oh, I know the answer to this one!* "Me, I'm disabled" *Oh my God. I'm disabled. How weird does that sound?*.

"There is a process to go through".

"Okay, I just rang because the disability people told me I should call you".

"There is a process to go through - what is your disability?".

*That was officious - what did I do wrong?* "I have two. Spondyloarthropathy & Hypermobile Joint Syndrome".

"There is a process to go through [yes, I got that impression, I'm beginning to wonder what it is...], you'll need a letter from your doctor saying what your disability is before you can access our service".

Okay...I have to prove it. That all seems fair. I figured that would be part of a form filling out thing anyway...except I hadn't really thought that far ahead, because I still don't know exactly what it is Access Ability do apart from give assessments.

"I'll send you out some forms to fill in - you'll have to provide some paperwork from your doctor saying what your disability is"

*ok, so I get it, I really have to prove it....wonders how many people spend their days calling up agencies pretending to be disabled just so they can ask for an assessment* 

"What's your address"

*gives address*

"I'll send you the forms, you fill them out & send them back".

"I hope your day improves for you". Yes I am just enough of a bitch to say it. 

"My day is great, thank you".

Good for you. I'm so sorry for the people who have to talk to you today. If they're ringing you to ask for help, then it's not such a good day. They've just discovered their lives are not what they thought they were going to be, that they need help to manage day to day. Their world has been turned upside down. They are lost and confused. They have no clue what they need. They don't know who you are, or why they need to call you. They don't understand why you are being so rude. There is a way you treat people with a disability: it's called the same way you treat everyone else.

Anyone with a basic understanding of disability is aware of the experience of powerlessness that being disabled can create. Why on earth would you treat someone like this?

As for being "a client" - if you were a store I would not shop there. I would go somewhere else. If I had any choice whatsoever in the matter I would not use your service I would choose another.

For the record, I worked in mental health support for 4 years, was on the phones at Lifeline for 5 years. I assisted with the Total Mobility Scheme at my regional council, answering the phone to people who "wanted an assessment". I can do this woman's job with my disabilities, standing on my head. If she dislikes it as much as it sounded over the phone. I will be very happy to have it. It would be an absolute walk in the park for me & and an absolute pleasure besides.

Access Ability, if you have a think & decide you'd like a new receptionist - may I apply for the job? Your clients will be so well looked after & absolutely delighted with their contact. They definitely will not be a puddle of tears after making the call, unless it's because finally they spoke to someone who was kind.

Pain

Since I last posted I have lost someone, a gorgeous soul, a very dear lady who I adore.

I am lucky to have a life filled with some very special people. Angels. The pain of knowing that they suffer & of losing them is mitigated only by the absolute joy of having had them in my life.
xxx

This post is about every day pain.

This weekend I put my back out. It's pretty crippling, no two ways about it, once your back is a mess you really are screwed. This is the third time in less than a month though, which makes it harder.

One of the problems with hypermobile joint syndrome or EDS (III) is that joints go "out" all the time. I sprained my wrist twice yesterday. I did it again today. That's just part of the package. It hurts.

And that's where the fun begins. This isn't just a condition where joints go out. It's about pain. It's about all the time pain. Not just when the joints go out - joints are always going out. I hurt all the time. Gravity is not my friend. Lying down a few times a day helps to decompress the joints that are otherwise compressed from being upright most of the time.

So, what do you do when for five years you've been told you have Chronic Fatigue Syndrome (CFS/ME), there's nothing that can be done about it, and then suddenly you're told - well actually you have a chronic pain condition. And if we manage the pain then you'll probably get some relief from the CFS/ME. I can tell you what you do. The moment that fatigue is a little less than it was you begin to do everything that you haven't done in five years. Which is great. Except...you hurt yourself all the time doing it.

The reality begins to sink in that you're merely trading one set of limitations for another set of limitations that look remarkably the same - but that are topped off with extra pain.

And then you have to once again start the grieving process for the life you don't have. And the life you won't ever have. You have to learn to accept the new one - this new one that is almost exactly the same as the old one that you had already accepted. But because it's different, you have to grieve again. It's in the rules.

Not only is there the physical pain. There's the emotional pain of grieving. For everything you can't do, for everything you will never be able to do. For the hope you had of getting better "someday".

And perhaps it's not so strange that you grieve for all of the other people who are suffering from various disabilities & who have lost the lives they expected, wanted or hoped to live.

Ink Pink does the Happy Dance

About 3 months ago I saw this awesome doc. A conventional one, at a real hospital & everything.

He didn't bat an eyelid at the whole ME/CFS & the MCS thing (even though I had a carbon filter mask on). He did a very thorough examination & then started telling me what was wrong with me...

He called it Central Sensitisation. It's something you can find out about by googling, but basically the way I interpret it, it means that my central nervous system (CNS) has gone ballistic & started producing really weird symptoms...like all the symptoms that go with ME/CFS, and MCS, among other things.

He talked to me about pain...Pain, what pain?...I don't have pain...well, not really, I mean it doesn't count. I mean, it's normal, isn't it? I just sprain things occasionally, I don't worry about it or anything...medication? No, I don't worry about that. Not unless I'm desperate. Even then...

Apparently because I have had this joint disorder (Benign Hypermobile Joint Syndrome - benign doesn't mean what you think it means) forever, I have had a whole lot of pain all my life. Because it's always been there I thought it was normal. And because I thought it was normal I ignored it. Meanwhile (it gets slightly more tricky) the neurons in my CNS got really good at firing for pain signals. Basically my CNS got a PhD in pain while I wasn't looking.

So. The doc tells me off for not taking pain meds & asks me to take then 4 x a day. Sure Doc. No problem, I can do that.

So I do. I take the pain meds. And when he tells me to increase them, I shrug my shoulders & increase them. He tries me on a few other meds that are supposed to help settle my CNS (down boy!) but they make me pretty ill so we lay off those & stick with the pain meds.

In 2 months I suddenly realise...my MCS isn't as bad as it was. I can go into a store without getting sick! And my ME/CFS! I can go out in the garden. I can "do stuff". I have more energy. Surely this isn't connected to the pain medication...

On my next visit to the doc he's looking pretty smug as I tell him how my whole life is turning on its head. I was sick. I was very sick. I'm beginning to realise that each time I start to feel fatigued, or each time I have brain fog, I can take pain meds & my symptoms will go away. I learn to scan my body to check for pain when I get fatigue or brain fog. I realise that every time I have these symptoms my pain has ramped up without me noticing.

This doctor has seen people like me before. He's seen people with MCS. He doesn't think we're freaks. He doesn't think people with ME/CFS are malingerers. He thinks I am funny because I am a walking talking textbook example.

Now I'm out in the garden. I'm doing housework. I'm out walking in the gardens, walking down the main street in town. In 3 weeks I go from needing a full respirator to go to my GP clinic to not even needing a carbon filter mask. I am beginning to live like a "normal". In just 3 months of taking nothing other than pain meds. No magic detox diet. No miracle treatment.

Everything (well ok, maybe not everything) that has been wrong with me over the past few years comes down to one simple thing. Pain. Talk about holistic. Every symptom I have he was able to track back to this one cause.

I'm not cured. I'm still sick. But I have this awesome feeling of freedom. I am recovering. I am certain this is going somewhere good.

The best risotto you've ever eaten

For anyone who tried  "Chicken soup for the sensitive soul" or is planning it, here is the advanced version:

The best risotto you've ever eaten

Instead of turning the stock left over from cooking the chicken (see chicken soup for the sensitive soul) , we're going to turn it into an orgasmic risotto.

You need to heat up the stock (I'm assuming that after you cooked the chicken, you froze the stock & ate the chicken. If you tore some meat off the chook & put that & maybe even some bones in you have an amazing stock ready to use). So get about 4 cups of it in a pot & heat it up.

At the same time you're heating the stock put a cup of arborio rice in a decent sized pot with a bit of oil & cook it for a couple of minutes.
If you're a 'normal' by all means fry off some diced onion before you start on the other ingredients. I don't because of the whole sulfur thing. If you can tolerate sulfur you're probably going to be able to make this even more awesome by adding a small amount of white wine (1/8-1/4 cup).
Dice some pumpkin into 1cm pieces, and chop some spinach.
Chuck the pumpkin & 1 cup of the warm stock in with the rice.
Wait until the rice has absorbed most of the stock and then add the second cup.
Do the same again with cups 3 & 4 of the stock, waiting between each for the stock to be absorbed before adding the next lot.
After you've added the fourth cup of stock put in the spinach. You don't want that to turn into over cooked mush, it's nicer this way.
While the risotto is still wet, but everything is cooked (rice should be al dente), take it off & it's ready to go. And it is divine. So prepare yourself.

I really think this recipe is going to work well with really decent tasting mushroom in it, but I have tested myself on mushrooms yet so I haven't tried, but you will know what I mean & if you are a mushroom person by all means go for it. In fact you could even switch the pumpkin for mushrooms. It would be oh so tasty. Especially with some truffle, but I'm guessing most of us don't keep that in our kitchen. I wish.

You can top it with parmesan if you can tolerate dairy. I like to toast some pine nuts just briefly & chuck those on. But honestly this stuff is so good it doesn't need any mucking about with. I'd just bung it in a bowl & eat it.

Don't think you can get away with using a carton of chicken stock. It will not be orgasmic risotto. It will be very average risotto. I will be able to tell.

One you've tried this one, let me know how blimmin' awesome you thought it was. I know loads of people are making the soup, but this is a whole new level for your tastebuds. Yum.

Les oiseaux & le pain

This morning the birds at our house are enjoying what I would like to think of as a "French" breakfast, in spite of its lack of coffee or chocolate. I remember fondly when fruit & bread would have seemed a perfectly civilised lunch at our house. That was before gluten intolerance. Still though, I am enjoying thinking that our birds are treated to the highest class of food in the neighbourhood.

They seem to think so at any rate. Brownie (the name we've given our frequent blackbird visitor) was there even before I had finished cutting up the pear cores. If I don't cut it, Brownie will steal the entire core, leaving nothing for Chunky (Chaffinch) nor any of the assorted (and unnamed) wax eyes.

I am beginning to think the physiotherapist I went to see the other week does not know as much about hypermobile joint syndrome as I would like to think she does. "Push up off the floor, breathe out & let your back slump toward the floor...". My vertebrae promptly slid into unaccommodating positions. I would be tempted to tell her "you broke it, you bought it", but the ramifications are too serious.

If there could possibly be a good side to a soft tissue lumbar injury then it is that I finally broke down & confessed first to my husband & then my GP how severe my pain actually is. The poker face usually maintained by my GP slipped briefly into amusement when I described my reaction to the tricyclics that had been proffered to reduce my pain. "I have never been so depressed in all my life", I wailed, as she smiled on.

It was all seriousness after that, but the letter from the latest specialist must have been "special" indeed as the GP decided to break out the "good" drugs.

As we left the clinic we passed Dr Arse, smiling kindly at us. A broken woman, I returned the smile. It turns out he is the registrar my husband saw & thought was really good. Since it was "random act of kindness day" I decided to forgive him. Perhaps "Arse" was a little harsh. Besides, it isn't like there aren't other health professionals for me to actively detest.

Ranty pants goes to the doctor

Today I went to the doctor. It was just to talk about the fluid I've had in my ears for 2 weeks. But he decided to take the opportunity to play "Twenty Questions".

"So, how's your pain?"
"It's worse than ever" I reply.
"What's changed lately?"
"Well, nothing really. I have hypermobile joint syndrome."
"Yes, I see that. But you would have known about that all your life, right?"
"No."
"Oh well. I wouldn't worry about it too much."

Really. I shouldn't worry about the severe & chronic pain I suffer every single day. About my pelvis & upper back subluxating at least once a day. Huh. Good to know. I wish I had known that when I was spending the last few days in tears scared I can't breed because my pelvis won't cope with pregnancy, that this condition is inherited & the drugs I am on are not conducive to baby-making.

"Well, I wouldn't if it didn't hurt so much", I say. "I'm really only here because my ears have been blocked for a fortnight."

"Yeah, well it says here benign hypermobile joint syndrome, see?"

You're an Arse. Don't you know the difference between hypermobile joints & benign hypermobile joint syndrome? One means you're a little bit more flexi than average. The other one stalks you like death. It changes the way you live your life. It's like the difference between CF & ME/CFS. It's the difference between a headache & migraine. A cold & pneumonia. Do they not teach you anything at school these days? You are an Arse & if I didn't need you & your prescription pad I would tell you that you are an Arse.

Maybe you can tell I don't really like doctors all that much. This one had a band-aid on his finger that looked like it had been there a week; fraying & dirty. He asked me about my meds but didn't know any of them when I told him. When I stood to leave he didn't move toward the door to see me out. I waited politely & then opened the door & let myself out.

Extreme recycling

Recycling at our place (with help from Dad) has really taken off. At our new home I've been amazed at what we can recycle. Back living in an apartment in The Big City we'd separate our waste from paper, plastics & glass & that seemed alright. But I've attained a whole new level of recycling now we've got a spot with a section. It's a level I like to call "extreme recycling". Yeah.

The bird feeder

Crusts & mouldy bread rates pretty highly with the birdlife at our place. They also get our apple & pear cores (and any other fruit bits), fat (skimmed from the top of the Chicken soup for the curiously sensitive soul). Cooked rice that has been sitting in the fridge for a day too long is very popular, as are the flax seed innards from my recently worn through heat pack.

The birds do very well out of this deal & I have to admit to supplementing their diet with seeds bought from the store as well as jam. But mostly they just eat what we have left over. They get a feed, I love watching the birds & so does my cat.

The worm farm

The worms eat pretty much anything the birds don't. Except meat & dairy. Which is fine because we don't eat those either, except for the chicken. The worms enjoy the vege trimmings & peelings. Vege that sat in the fridge a day too long they love. Egg shells are good in there too. Plus this is where any paper or cardboard that has already been recycled (e.g. egg cartons) go. The worms are going gangbusters, to my amazement. I honestly thought they'd all be dead inside eight weeks. The worm farm is in a shed out the back. I don't think they'd have coped with the snow the other week.

The worm farm itself is made from recycled bins that were left at the property when we moved in, with a bit of info on how to build a worm farm from ye olde internet.

I got a council subsidised "Bokashi Bin" as well, but the worms are developing quite an appetite & I might not be using it much longer.

After that we do the glass/plastics/paper/cardboard separating & what's left is not much.

We've also (thanks to my Dad), had some joy recycling some other bits & pieces.

So far our "new" house has gained:

•  1 recycled rimu lounge floor
• 1 shower door, circa 1970s. It was in the family house when we moved in & it wasn't new then. It's now our shower door.
• 1 glass panel door, origin unknown (that is, Dad was asked to store it by someone who has never returned to collect it. Dad can't remember who that was). The door is not an exact fit for the doorway. Actually there's an inch gap at the bottom.
• 1 weather proofing strip. I can't remember how long Dad said this had been sitting upstairs at the shop. Maybe 10 years.

Dad's threatening to clean out his garage. Better get out my shopping list.

Precious things

I've never been one for stuff & clutter.

I like things in my home to have a practical purpose, otherwise they are just there to take up space, time & energy. They collect dust & create work.

No, I prefer the practical - everything has a use. It does something worthwhile. It contributes to my life in a meaningful way. It makes my life easier, more enjoyable.

Not for me the purely decorative, no, no, not at all. If I can't use it, I don't need it. Sentimental reasons are not enough to hang on to an object that is cluttering up a room.

As life goes on however, I am developing a greater tolerance for these kinds of items.

Now that I myself am a purely decorative object with no practical purpose that takes up space & creates work, I have some sort of empathy with similar objects in my home. Sure I might need taking off the shelf once in a while for a quick dust. But that isn't the sum of my value. I have less tangible attributes. Perhaps I don't make life easier in a practical way, but I make it more fun. Or better looking.

;o)

Sweet nothings

Last night I said to hubby "If I were a car you would have taken me back to the dealer by now".

"No, not at all honey" he said reassuringly.

"If you were a car I would have pushed you over a bank".

Chicken soup for the curiously sensitive soul

Ingredients
1 small organic chicken (whole for 2 or more, half for one person)
2 carrots
spinach
rice noodles
water

Method
First up, I'm going to say that if you can tolerate onions & garlic you should put them in. In fact use chicken breasts instead, chop them up & marinate them overnight in a whole lot of crushed garlic (trust me).

I can't so for this one we're going without. Get your big stock pot. If you don't have a pot big enough for this chicken you are already in trouble. You might be able to get around it by chopping the chicken into bits but I'm not promising anything.

Chop the spinach & carrot (and any other veges you can tolerate & want in here, but definitely not onions if you're onion intolerant) & chuck them in the pot. Put your chicken in there & top up the pot with water.

Simmer for, I don't know, maybe an hour, maybe a bit longer longer. This isn't a cooking show you know. I've got mine on & it's 90 mins until dinner time.

When all is cooked take the chook out of the pot - unless you started with chicken breasts done in garlic, in which case leave it in. Oh you are in for such a treat.

The chicken stock with the veges in it can go in the freezer for a while because you now have several days worth of really good tasting chicken to eat. No cooking for the next week - yeah!

Remember to act surprised every time you offer your cat a bit of chicken & he turns his nose up at it. But don't offer your cat chicken if you used onion &/or garlic, it's toxic to cats.

When you want to use the stock & vege, heat it up & prepare the rice noodles (you can use another type of noodles, the instant variety are pretty popular. We're sticking with rice, because of the whole gluten issue). Chuck them in, cook for a bit & you're all good.

A chocolate guinea pig (I want to be)

Every couple of years a research article is published on the benefits of dark chocolate for people with ME/CFS. While I should mention that none of these people have been cured, nonetheless they report feeling better when eating chocolate when compared with sufferers eating something that has the same colour & consistency as chocolate, but which is not chocolate.

I know. Unbelievable.

Now I'm no scientician. But I applaud this medical research from laudable institutes such as Nestle, Mars, & Hull University (one of the world's top 500 universities). In fact I really want to know how I can get in on one of these studies. For purely scientific reasons you understand. I just want to give something back to the community. And if this is one way I can contribute to the development of medical science, then I am willing to donate my body for the cause.

In the meantime I am conducting a little bit of background research. Knowledge is power.

1st NZ report on implementing the UN Convention on the Rights of Persons with Disabilities

Over the end of 2010 submissions were called for New Zealand's report on implementing the UN Convention on the Rights of Persons with Disabilities.

In response submissions were made including requests for awareness raising, education for health professionals & the issues surrounding lack of access to health services for people with MCS in New Zealand.

The first report has just been released, and article eight, section 36 responds to the issue of lack of awareness surrounding the issue of awareness in disabilities such as multiple chemical sensitivity:

36. Awareness and understanding of different impairment types by government agencies, professionals and the public varies. Disabled people with uncommon impairments such as those arising from multiple chemical sensitivity syndrome report that there are few or no services available (to respond to severe reactions to chemicals) and health professionals lack knowledge about such conditions.

See link to full report

I am delighted to see that there has been acknowledgement of the lack of services available to people with MCS & in this first report a committment to raising awareness among health professionals.

Medic Alert

My Medic Alert bracelet must be broken. Not once has it alerted me to an approaching medic.

When I put it on it feels like it ought to create some sort of "invincibility shield". But it doesn't. Or at least it hasn't yet.

Next time I update mine I think that as well as listing "allergies" & "conditions" I will include a "wish list" of superpowers. Like "being able to stay upright for 15+ minutes!", and "walking short distances unaided!". Next time I fill in a form for Medic Alert I want to be able to add "Gluten, soy and dairy tolerant!"

That way if any medics sneak up on me (in the event that the new "alert" bracelet doesn't sound the alarm) they will know to administer vast amounts of chocolate cake. Stat!

Pros & cons of the outdoor loo

Pro: Excellent ventilation. Removes need for air freshener.

Con: Sharing loo with 2 spiders & an earwig.

Con: Can be quite cold.

Pro: Over head heat lamp provides quick heating.

Con: Quick heating from over head heat lamp overcomes spider which drops onto the lap of the user.

Moral: Carry a broom & look up before you sit. Alternatively, invest in trauma counselling.

The Respirator

Last week I went to see a brand new GP.

As I was walking into her office and during the usual smiles "hello & lovely to meet you" conversation, she commented "nice glasses!".

My glasses are rather stylish, quite groovy in fact. But I have to wonder: Is this what was really going through her mind when she saw me walking toward her wearing a full VOC mask of the sort used by spray painters or weed sprayers?

A friend once kindly remarked that if I were to don a high visability fluro vest & a hard hat I would be hardly conspicuous at all.

In the waiting room I had slipped from my smaller carbon filter into the "respirator" style, and while the carbon filter mask is conspicuous on its own, in a doctors waiting room I could easily be mistaken for a person with symptoms of swine or avian 'flu who is being overly considerate.

Not so The Respirator. Which is kind of like The Terminator but less cool & more scary. Although I'm pretty confident it will catch on one day.

A family member was in the waiting room when I arrived (it's a small city) and while he managed not to raise an eyebrow when I slid on the carbon filter mask, as I slipped the respirator from my handbag into my lap he ejaculated "Shit a brick! Is it that bad?!". Smooth hon.

I'm quite used to the averted gaze of adults in the waiting room & the full blown stares of the under sevens. Even the "What the...!" of the eight year olds. See "The waiting room" for more tales of fun. But "nice glasses" has to be my absolute personal favourite. At least until I start getting wolf whistles.

Mr Postman

Dear Mr Postman.

I hope you are very well. With the inclement weather I hope you are keeping as warm & dry as possible.

I have just recently moved to your route, so you don't know me, but we will be seeing a lot of each other. Or rather, I hope we will.

Last week you left 3 notes in my letterbox. Two said that you'd attempted to deliver parcels, no-one was home, there was nowhere suitable to leave the parcel & could we please pick up the parcel from the chemist in town. One said that our letterbox was not large enough to fit the parcels & could we please get a bigger letterbox, and meanwhile would we pick up our parcel from the chemist in town.

I understand you will have been doing this route a long time & I have only lived here for one month. But I am housebound. That means I am here all of the time. Unless I am at a doctors appointment, which is about once a month. The first day you left a note saying we were not at home the moving truck was in our driveway & our front door was wide open. I can assure you we were at home. The next day we were also at home.

If your inclination is not to disturb us, or to avoid our quite ferocious cat (whose terror inflicting ability is somewhat hampered by his phobia of strangers, but nonethless would be quite a tyrant but for a complete lack of courage & the fact that he is not allowed outdoors), then may I recommend the front porch, which is well sheltered, as a suitable place to leave a parcel. If you feel that the appointment of our front porch is not suitable for parcels, then may I recommend either the side porch or the rear porch as alternatives. Honestly I am not at all particular on this issue, and as you can see, we are well furnished with porches.

Regarding the note you left concerning the size of our letterbox, we have what I would consider a very large letterbox. Enormous in fact. People say "oh my, what a large letterbox". That's what I imagine they say at any rate, it certainly warrants the comment & is of all the houses on my street, the largest by far. I'm pretty sure, if there wasn't a law against it, that I could fit a small child in there. Please feel free to inspect the letterbox & advise what dimensions we will require in order for you to leave the parcel in. I'll be certain to refrain from ordering medium or large sized children in the interim.

I think it would be very helpful if we could come to an understanding. As I have mentioned, I am housebound. This means I don't go out shopping & any shopping I do is online & needs delivery to my home. Home delivery is somewhat defeated when the mail is instead taken to the pharmacy in town. Being housebound I am home at all times & am will be delighted to save you the trouble of filling in a needless card & delivering a parcel to a pharmacy. If helpful I am happy to also take my neighbours parcels & can easily pass it over the fence when I see them. Or I could pop leave a note in their letterbox & save you the trouble.

In the meantime please continue to feel free to use my driveway to pull in & turn as I notice you are in the habit of doing.

P.S. Easter is coming & we will have chocolate eggs. I have been in the habit of giving them to postmen who deliver parcels to my house. Let me know if you are diabetic, dairy intolerant, Muslim or Jewish, I am certain we can find something more suitable.

Big jet plane

This note is of my experience of flying with MCS so that other people who need to fly can use the information if it is applicable to their situation.

Pre-planning:

• I purchased a MedicAlert bracelet & had the details of my illness put on file. I also bought a 'respirator' style mask & tested it several times in high exposure settings before the flight.
• My husband decided to invest in carbon blankets, both for the flight & for the bedding at the other end.
• We were extremely happy to find a direct flight to our destination. That was something we thought didn't exist, but it made a world of difference - we now only had to worry about 1 flight & 2 airports, rather than 2 flights & 3 airports. It also reduced the travel time by many hours.
• My husband phoned the airline & the airport. Initially it was difficult but finally we were put on to the manager for the airline at the particular airport from which we were departing. Once he was involved everything became comparatively simple.
• In my own case because of my ME/CFS planning included a wheelchair plus assist. It also included arranging a late check in time, and organising with staff to be boarded last. Passengers with disability are routinely boarded first.
• Towards the date of departure the airline contacted us to advise that they would be able to leave seats around us free of passengers so I would have less exposure.
• Before we left I saw my GP. She provided two letters; one detailing my medication, the other detailing my illness & what my requirements would be including the wearing of the mask, access to fragrance free bathrooms and a "fragrance free flight" :o).
• I topped up all of my prescription medications & supplements, particularly tri-salts which I use for chemical reactions.
• Clothing was planned to allow for least skin exposure possible. This included hat & gloves.

At the airport

• On arrival at the airport we were checked straight in. My air purifier was accepted as checked luggage. Because it was medical equipment & labelled such we did not pay for it as additional cargo.
• For check in I had only to shift my respirator briefly while my passport was checked, to allow confirmation of my identity.
• Due to airport redesign I did have to be taken through duty free. This is something we would have avoided previously by using a side door. Due to the renovations this was not available.
• The airline arranged for the disabled bathroom in the lounge to be cleaned only with water & bicarb for 2 days prior to our trip. On the morning of the trip, once we arrived at the lounge the door to the disabled bathroom was locked so that only I would be able to access it. At the time we were flying the lounge was reasonably empty so this would have had no impact on other travellers. Also due to the few people waiting in the lounge I was able to replace my respirator briefly with my plain carbon filter mask for a break.

On the plane & off again

• We were boarded last as arranged. On the aeroplane the staff were extremely helpful. While we had not been able to arrange a fragrance free bathroom on the plane they did arrange for us to be first off. Remarkably they also ensured that the plane was not refuelled until after we'd disembarked.
• Once off the plane I was provided again with a wheelchair plus assist. At immigration we were able to "queue jump" & once more I removed my respirator for identification. Once we'd claimed our luggage we were quickly through customs, declaring all of our "declarables".
• My father had arranged to collect us & was able to arrange to park in a disabled access carpark near the terminal exit at which point I was able to remove my respirator & replace it with a regular carbon filter mask from there on.

And Home!

Once "home" I was amazed to find that neither my clothing nor that of my husband was contaminated with scent. We'd probably been on the first flight for that plane that day & avoided scents from previous passengers. I had no MCS reaction at all to the flight.

Overall it was an incredibly positive experience. It has been two years since I last flew & while I was grateful this was a one-way flight I am absolutely thrilled with the help we were able to obtain from the airline & airport for a condition that it is fairly certain they knew nothing about.

Now here we are dealing with the challenge of a new life in a new home. The house is not MCS perfect, but few houses bar those purpose built would be & I am hopeful we'll be able to make the required changes easily. That is a story for another blog!

Meanwhile, if you have MCS & are flying all I can suggest is make a million plans, ask for help & keep asking. We got a lot of "no"s before we found our one "yes", but it was all we needed & without the help we got I would not have arrived as safely as I did.

Ink Pink - not a virtuous greenie

I am not some sort of 'alternative lifestyler'. If I did not have MCS I would have a cupboard full of beauty products, a full face of makeup & a closet full of rayon. But here is the truth.

I brush my teeth with calcium powder. There are no toothpastes natural or other I can use anymore.

My skincare consists of soap made from olive & coconut oils and not much else. On my face I use a product that has 2 ingredients: 1 is water, the other I'm pretty sure if I remember right from my psych study is from eyeballs. It's expensive & commercial & I am happy to use it as my skin is so thin & dry. I then put a layer of moisturiser made only from vege oils on top. I often joke the moisturiser (which is also use for legs, hands, body) is "salad dressing - without the vinegar".

There is no makeup - though I keep 2 tubes of lippy on the off-chance that one day I will be able to tolerate these (they are all "natural").

I wash my hair in warm water. When I've had heavy fragrance exposure I wash it with a chemical free shampoo. This happens possibly twice a month.

My clothing is all cotton or wool. I don't know why, but when I wear synthetics I get a rash.

My food is organic. The chances of reacting to non organic produced foods is high (severe tummy pains that last days) & the chance of reacting to organics is much lower. Though I still react sometimes. My foods are limited to about a dozen or so. One of which is sugar :o).

Whenever I go out I carry or wear a mask.

Whenever I have someone in I wear a mask.

If you hug me I will need to change clothes and maybe take a bath.

Whenever I have someone in it takes 2 -3 hours to get rid of the 'chem trail' with an industrial strength air purifier, and requires washing of the throw rugs they have sat on & airing the sofa. I end up isolated in 1 room while this process is ongoing.

Cleaning of the house is done with water & elbow grease. Bicarb soda is the other product & occasionally vinegar (but not often).

I am not selling this lifestyle. It is not an 'ideal' I aspire to or think others should. I guess it kind of sucks. But to be honest I don't worry about it. It is just the way things are. Who cares what I brush my teeth with - if the dentist is happy & I am happy then all is good.

There's a few of us out there though, we have to live this way, we can't pick & choose. We're not the "virtuous green". We're this way because there is no other choice.

By the way, if you meet someone with a cold, run & don't walk the other way. The one going around is vicious :S.

Avoiding chemicals in everyday life

From one carbon based life form to another, avoiding chemicals in everyday life is pretty darn difficult.

Just in this last moment I've poured myself a 75% silica vessel of H2O. There's just no getting away from it.

Just to clarify, chemical minimalists don't think this way. For me it's mainly the ones marked "toxic" that I'm concerned about. If it should be kept out of reach of small children & animals I really don't think that cleaning your windows, clothing or dishes in it is a good idea. I would also be loathe to have it on my food or in my beverages - or in my air.

But that's just me. Of course having chemical sensitivities makes this a lot more of an issue for me. Someone else on the other hand might not notice any effect from the many products that would knock me flat.

That said, there are certain products out there that I really think we haven't thought through. Sure anything that shouldn't be used around your pet canary (fly sprays, teflon pans) is a worry, but who had the brilliant thought that we could develop products to spray cockroaches in our own homes while we pop out for a few hours & that it wouldn't cause us any problems.

Yep. Roaches are going to survive a nuclear holocaust, but bug bomb the house honey, that'll sort them. And then don't forget to pick the kiddies up from day care on the way home. Nervous system damage anyone?

Boy we are dumber than we look.

Meanwhile I've got ME/CFS & a cold. There definitely ought to be a rule about having more than one illness at a time. Make an orderly queue. Wait until I get over the other ones & then I'll do the colds.