Self management and blame with chronic illness

One of the most important coping skills for living with a chronic illness is self-management. When your energy is so limited that you have to ration it for each daily task, self-management provides the tools to do so. It plays an even larger role when your illness has no other treatment available, such as ME/CFS.

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Unrest film available for preorder on iTunes

Movie poster for film "Unrest".

Unrest, the pivotal documentary made from bed by ME/CFS sufferer Jen Brea, is now available for preorder on iTunes. You may remember Jen’s TED talk,“What happens when you have a disease doctors can’t diagnose”, which I summarised on the blog earlier this year. Her movie proves to be just as honest, heart breaking and educational as her speech.

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Beginning my FODMAPs journey

Content warning: contains discussion of dietary restrictions

 

You know when you’ve been putting something off for so long that you just can’t ignore it any longer? That was me and FODMAPs. There were so many reasons I couldn’t do it: it’s complicated, it’s expensive, I don’t have the brainpower, I can’t cook (!). A few weeks ago, I finally reached the tipping point where my desire to not be in constant, crippling abdominal pain overwhelmed all these reasons, and I gave the low-FODMAP diet a go.

Fermentable, oligosaccharides, disaccharides, monosaccharides and polyols

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Electrolyte drink mega-review

Usually my POTS* is content to take the back stage and let ME/CFS run the show, but recently it has been asserting itself in a rather forceful manner. Sitting on raised chairs, showering and just existing seems to send my blood rushing from my head to my feet, leaving me spending a lot of time on the floor or against my dresser with my legs up to get that pesky blood back where it belongs.

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An undemocratic postal survey

Last week, I received my voting form for the Australian Marriage Law survey. Thanks to the political will of the Coalition Federal Government, Australians now have the opportunity to cast their potentially meaningless vote on the legalisation of same-sex marriage via an unnecessary and divisive postal survey. Costing $122 million, the survey is non-binding*, and several Liberal MPs, including almost half of South Australian representatives, have already claimed they will not acknowledge a “yes” vote.

Character from The Simpsons looks at bill. Text readsL (sigh) 122 million dollar-adoos?

Legally, a survey or plebiscite is not necessary to make any amendments to the Marriage Act, which the Howard government changed in 2004 to define marriage as “the union of a man and a woman to the exclusion of all others”, and to prevent same-sex marriages conducted overseas being recognised in Australia.**

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When “R U OK?” isn’t enough

Content warning: mental illness, suicide, eating disorders

Today is R U OK? Day, the day upon which you are encouraged to ask your friends how they are going. It is a day focused on suicide prevention, and aims to encourage those who are struggling to seek help. It is also a day that makes me extremely uncomfortable about our society’s relationship to mental illness.

A graphic from the R U OK? Day campaign.
From the R U OK? Day toolkit.

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Handy responses to commonly heard phrases

Warning: contains GIFs.

Do you have a chronic illness? Have you heard the same tired comments 50 times already this year? (No, I’m not contagious, Jan.) Instead of having to think up answers to the same old questions time and time again, I’ve provided a handy guide for those phrases that crop up time and time again.

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