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.

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.

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.

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.

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.

Hospital guidelines (2)

Today I received this letter:

Dear...

Thank you for your email of 1 November 2010 to the Minister for Health, the Hon Daniel Andrews MP requesting follow up information on the distribution of the Multiple Chemical Sensitivities Guidelines for Hospitals in Victoria.

In accordance with the convention that the Government assumes a caretaker role during an election period the Minister has asked me to reply on his behalf.

I am pleased to advise that the South Australian health department has given permission for these guidelines to be used in Victoria.

Once these guidelines are adopted for use in Victoria they will be distributed widely to all public health service providers. It is anticipated that guideline distribution will take place in January 2011.

Yours sincerely
Lance Wallace
Executive Director
Hospital & Health Service Performance

For earlier correspondence refer to: Guidelines for hospitals.
See the current South Australian MCS Hospital Guidelines here 

August 2011 update: Success! Multiple chemical sensitivity: A guide for Victorian hospitals
I heard through ME/CFS Victoria that some other members were also approaching the Victorian government on this topic - it's brilliant to see the hard work that has been put in (it's no mean feat writing the shortest polite request to a member of parliament when you have ME/CFS, not to mention the research). I don't know who the other people are who were making the request as well, but I'm so thrilled that the government have acted on our requests.

Guidelines for hospitals

Dear...

Thank you for your correspondence dated 8 August 2010 in relation to Multiple Chemical Sensitivities Guidelines for hospitals and for providing information on the recently published South Australian Multiple Chemical Sensitivities Guidelines for hospitals.

I am pleased to advise that the Department of Health will liaise with the South Australian health department for permission to use these guidelines and subsequently disseminate them widely to all our public health service providers.

Yours sincerely,
Hon Daniel Andrews MP
Minister for Health