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.