Mar 16, 2011

Going Organic

So, I've just spent a small fortune on organic bedding in the hope that it will improve the symptoms I've come to associate with MCS (Multiple Chemical Sensitivities).

It's a fairly big investment but I wanted to do it sooner rather than later just in case it works.  I mean, what if I waited six years until I could really afford it and realised I'd wasted my late twenties/early thirties feeling far more ill than I had to?

Of course, you could say that about all the expensive ME/CFS "cures" on the market - most of which I will not be testing out - but I have a good feeling about this one.

The two biggest health improvements I've had since being diagnosed occurred;

a) when I realised my old, musty doona cover made me feel far more like a hungover marathon runner who forgot to stretch than the new one; and

b) when I moved into my current apartment, which doesn't have the old house smell of my previous homes.

Also, as anyone reading this with CFS will know, chemicals found in perfumes, deodorants, air fresheners, incense, aftershave, scented candles and cleaning products tend to make us nauseous and dizzy.  The "Lynx Effect" is not a positive thing on people with CFS.

The fact that I can still smell the fire retardant chemicals in my two year old mattress on a bad fatigue day is a fairly sure sign that the effects of sleeping on it aren't the best.

The following is from an article in the Alternative Health Times:
"According to the Consumer Product Safety Commission, the average 5 year old sleeping on a fire proof mattress will absorb .5 mg of antimony every night, which is 63 times the amount the EPA says is safe. Antimony is very chemically similar to arsenic, and long term exposure has been shown to contribute to heart, liver and lung problems, miscarriages, and cancer.

In addition, the chemicals being used as flame retardants can combine with a common fungus (that frequently lives in mattresses) to produce toxic "nerve gases" which can have devastating effects on infants. In some cases, the gas produced is toxic enough to shut down an infant’s breathing within minutes, leading to Sudden Infant Death Syndrome (SIDS)."
If this is the effect regular mattresses are having on healthy people, I'd say MCS sufferers should be staying the hell away!

Most of my cool, new stuff will arrive on Monday.

So my question now becomes; would anyone like to buy an apparently poisonous, second hand mattress? Only been rained on two ... maybe three times due to my inability to keep the skylight closed when I leave the house.

Mar 5, 2011

Cool Foods We Miss

Most people with ME/CFS have food sensitivities.  At one point I was pretty much on a diet of meat and veggies because everything else was problematic in one way or another.

These days I just avoid dairy ... most of the time.

(I am a fan of icecream and chocolate and am willing to suffer for it!)

Yesterday though, as we browsed the shelves of the local servo, I had a conversation with my housemate Karen which got me thinking; people with ME/CFS are not the only ones who have to give up foods that they love.  Due to discontinuation or lower distribution, we've all at some point had to give up an addictive taste sensation.

Here's a few of mine and Karen's:

  • Diet Vanilla Coke,
  • The Choc Honey Malt and Jaffa Big Ms,
  • Raspberry Sunny Boys,
  • The McDonalds Kahuna Burger and their Jaffa and Choc Mint range of Sundaes and Thickshakes,
  • Karen misses Dr Pepper (even if no one else does),
  • 20 cent lollie bags from the milk bar,
  • Giant Sherbert straws,
  • Cadbury's Top Deck chocolate bars (my Dad is a chocoholic and he particularly missed this one),
  • The cheesy bread they used to serve at sizzler,
  • The old KFC buns (why on earth did they change those?),


... looking at this list, I'm thinking maybe, just maybe, it might have been a good thing that most of this stuff was discontinued.  I'm sure Jamie Oliver would love it if no one ever ate any of this stuff again.

Sigh. 

Mar 3, 2011

The Party Trick


With my first post I really want to identify something positive about ME/CFS.  I'll be doing this periodically on this blog  and first up I've chosen: Hyperflexibility.

Hyperflexibility isn't officially listed in the symptoms of ME/CFS anywhere that I'm aware of, but in 2002 Dr. Peter Rowe, a professor of pediatrics at Johns Hopkins, accidently discovered his CFS patients comparing all the cool things they could do with their freak joints.

Consequent testing has shown that 75% of kids and teens with CFS have multiple hyperflexible joints compared with 20% of the general population who only have one.

Dr. Chris O'Callahan at the Alfred Hospital has unofficially been studying this phenomenon in adults with  CFS/POTS for a number of years.  I went to see him on a recommendation from a friend and found that he was building up a pretty funny looking evidence base of photographs, some of which had to be twisted around a few times before you could work out which ways the joints were facing.

I think I was the first patient to contribute a video to the collection.  I discovered my own hyperflexibility in 1996 - 9 years before my CFS symptoms developed - when I first succeeded in holding my hands behind my back and pulling them over my head.  When I showed this trick to Dr. O'Callahan, he got very excited about taping it for a conference he was soon to be attending.

O'Callahan has linked the hyperflexibility to abnormally high heart rates upon standing (Postural Orthostatic Tachycardia Syndrome or POTS) in CFS patients.

I can't express how validated I felt when I first saw the line graph representing my heart rate results and the comparison to a normal control.  My heart has been all over the shop for years, and I've brought it up with pretty much every doctor I've seen since 2005, but the tachycardia (fast heart beat) isn't predictable and doesn't come up in the standard tests GPs do when they check your blood pressure.

As far as I know, Dr. O'Callahan is the only doctor to test for tachycardia in CFS patients with a 24 hour heart monitor and I think the findings are very exciting.

It all strongly supports the 'ME/CFS has a genetic component' theory.

Medical findings aside though, when it comes down to it, hyperflexibility is a really cool party trick.
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