February 2, 2012

Fighting Fibromyalgia & Ignorance

Posted in Health tagged , , , , at 2:33 pm by potofcallaloo

Controversial Sun newspaper columnist Rod Liddle has caused a great upset among disabled people and sufferers of ME and fibromyalgia – people who he calls ‘the pretend disabled.’

People like me who suffer from debilitating, chronic muscle pain and exhaustion, along with a slew of symptoms that impact on our daily lives. People like me who live on strong pain killers and medicines just so we can get by. Yet, he calls us ‘the pretend disabled.’

In his latest column he writes, “My New Year’s resolution for 2012 was to become disabled. Nothing too serious, maybe just a bit of a bad back or one of those newly invented illnesses which make you a bit peaky for decades – fibromyalgia, or M.E.”

Liddle went on to say that being disabled is now “incredibly fashionable.”

“And being disabled is incredibly fashionable. The number of people who claim to be disabled has doubled in the past ten years.

“I think we should all pretend to be disabled for a month or so, claim benefits and hope this persuades the authorities to sort out the mess.

“It has become easier to claim those benefits, partly as a consequence of the disablement charities who, out of their own self-interest, insist that an ever-greater proportion of the population is disabled.”

Criticisms

The crass remarks have been condemned by many charities representing the disabled and people with these conditions.

Pressure group Social Welfare Advocacy responded by saying,

“Rod Liddle’s blatant and insensitive attack on sufferers of Fibromyalgia and Myalgic Encephalomyelitis is absolutley disgraceful and unforgivable. Both of these conditions are extremely debilitating yet despite this many sufferers find it exceptionally difficult to successfully claim disability benefits which directly contradicts Mr Liddle’s claims that claiming disability benefits “is easy”. Whilst a few sufferers will be able to hold down a job with these conditions many more find it impossible and live in constant pain and agony despite the use of very powerful pain relief and pain management techniques.

On its Facebook page, local charity UK Fibromyalgia has called on the British public to boycott News International. The call has attracted a flurry of strong criticisms from its almost 3000 members.

Liddle and The Sun should apologise for this disgraceful article, which has since been removed from the newspaper’s website. It has caused great offence and hurt to the disabled and those of us battling against fibromyalgia and ME.

People like him make life even more difficult for sufferers, setting us back several steps in our struggle to make people aware that these conditions are very real and not all in our heads as some claim.

September 6, 2011

Fibromyalgia Awareness

Posted in Health tagged , , , at 8:54 pm by potofcallaloo

“Fibromyalgia? what’s that?”, “something to do with fibroids?”, “never heard of.” These are some of the responses I get when I mention the word ‘fibromyalgia’ in conversation with people I encounter.

For a condition that affects possibly 1 in 20 people globally and drastically changes the lives of its sufferers, there seems to be little awareness of it. Fibromyalgia is a condition that’s characterised by widespread body pain and a host of other symptoms including:

-hypersensitivity to pain

-chronic exhaustion which can be debilitating

-insomnia

-regular dizziness

-cognitive issues like short and long term memory loss, problems concentrating

– inability to regulate body temperature

-depression and anxiety

‘Fibro’ means fibrous tissues, such as tendons (tissue that connects muscles to bones) and ligaments (tissue that connects bones to bones); ‘My’ means muscles and ‘algia’ means pain.

There is hardly anyone I know with fibromyalgia who can’t attest to how this dreadful condition impinges on our everyday lives.

Yet, sufferers often find themselves marginalised by skeptical friends, family, co-workers and even general practitioners who many times seem to think the symptoms are conjured up by our overactive imaginations. This has been my continuous experience since a childhood of frequenting my dubious doctor’s office.

“You just need exercise” and “your shoes must be too tight” were some of the responses I got from my new GP, whose office I limped into recently, a couple weeks after I had been unable to walk due to severe pain in the soles of my feet.

Never mind that she had been aware of my diagnosis for over two years, had me seen by a specialist to confirm this diagnosis and frequently writes the referrals that grant me appointments with new rheumatologists (not to mention the increasing prescriptions for pain killers and other meds).

This experience isn’t uncommon among sufferers though. The stories can get quite nightmarish. In fact many of the people I know with FM are in wheelchairs or using walking aids and still face great skepticism!

Many sufferers find it difficult to manage simple lives, relationships and work, and significant numbers have ended up on social care.

A lack of support and awareness only makes living with fibromyalgia even more distressing.

There is no cure for it but I pray everyday for advances in medicine which could put an end to our oftentimes dreaded existence.

Please take some time to learn more about it and spread awareness. It’s fibromyalgia awareness week in the UK but the world certainly needs to know and understand more about it.