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Dots and Yarns has shared a photo essay of a normal day with ME and a positive attitude

“Usually, on the 12th of every month I participate in the ’12 von 12′ pictures of the day – and I will proceed to to that, but 12th May is a very special day for me. It’s International CFIDS/CFS/ME Awareness Day. So for this ’12 von 12′ I will try to paint the picture of what it means to live this illness…”

See the photos at 12 von 12 on CFIDS/CFS/ME Awareness Day – Dots and Yarns

Maggie at Liverpool Leftovers has been reflecting on those with ME who face the loss of their personal lives, something that isn’t often written about.

“But I know of so many people with this DD (Damned Disease) who live alone, who cannot get out to meet with potential partners and friends, who have to face the possibility of never sharing their lives with anyone.

Meanwhile we are all left with clinics run on psycho-social theories that do not address the effects of this illness even in psycho-social terms.

I delight to have the joy of twin grandsons, but I despair that many of my fellow patients will be deprived of this joy in their lives.

It’s time the MRC and NICE woke up to the fact that around 250,000 people in the UK are not only lost to the work place, but also are losing out on one of the most important aspects of their lives – their family lives.”

From International ME Awareness Day 2010 – Maggie, Liverpool Leftovers

“Those of us with ME know how to hide our disability as best we can until it reaches the point where we run out of energy and we start to slip through the cracks.”

Laura Ann Dunks explains what it’s like to live with ME and just how disabling an illness it can be:

“There are 250000 people with ME in the UK. Most people have a relapsing and remitting illness, where they can manage to stay fairly stable if they stay within their own boundaries. If they exceed those boundaries, whether it is to sit up in bed, or cycle round the block, then they can very quickly because very exhausted, weak, unable to move, or to explain what is wrong. This will then cause them to relapse and within the next 24 hours or longer they will become far worse than they were before they did too much. However, a small proportion of people have a progressive illness where by everything they do is too much and they get continually worse. Some patients appear to improve as long as they don’t overdo it, with some patients going in to remission and being able to live normal lives for a period of time. However, studies have shown that only 2% of patients recover completely.”

From May 12 is ME/CFS Awareness Day – Laura Ann Dunks, The Voice Within

Guilt, denial and “first world” problems? Claire blogs for ME Awareness:

“Many quacks – and by quacks I mean the types who deny the heaps of medical evidence and the W.H.O. classification – run clinics where M.E. sufferers are denied their essential supports and told that they can do without them if they want it enough. Women and children with M.E. are mentally and physically abused by the health system. Sophia Mirza was forcibly sectioned having refused to attend a clinic where GET and CBT were mandatory for patients. She died two years later.

The element that links these incidents is denial. It is difficult to understand how a doctor can say with a straight face that patients think themselves ill. Yet a small group of psychiatrists are defining British government policy towards M.E. with this very argument, and while some are growing wealthy applying harmful “cures” to these supposedly recalcitrant women, there is no funding for biomedical research into the illness.

This is nothing new. Multiple Sclerosis was once termed hysterical paralysis…

From M.E. awareness day: In Denial – Claire, Scríbhneoir páirt-aimseartha

Bloggers have been doing their bit to spread the world for International ME/CFS and Fibromyalgia Awareness.

“… in an effort to do my small part in raising awareness about this illness, here are just a few basic facts about ME/CFS:

1. Chronic Fatigue Syndrome (CFS) is a serious disease with a ridiculous name. CFS is also known as Chronic Fatigue Immune Dysfunction Syndrome (CFIDS) and Myalgic Encephalomyelitis (M.E). It is often abbreviated ME/CFS.

2. ME/CFS is a complex, multi-systemic illness, effecting the immune, endocrine, cardiovascular, autonomic, and central nervous systems. It is classified by the World Health Organization (WHO) as a neurological disease.

3. In order to be diagnosed with ME/CFS, you must present with: extreme, incapacitating exhaustion that is not alleviated by rest and reduces your activity level by at least 50%, as well as at least four of the following symptoms: post exertional malaise (a worsening of symptoms after even minor exertion) lasting more than 24 hours, muscle and joint pain, swollen lymph nodes, sore throat, low grade fevers, headaches, unrefreshing sleep, and memory loss or difficulty concentrating. These symptoms must be present for at least 6 months or longer. ME/CFS patients often also suffer from neurological problems, sensory overload, orthostatic intolerance, exercise intolerance, flu-like symptoms, shortness of breath, chest pain, and other symptoms …”

From May 12th: ME/CFS Awareness Day – Laurel, Dreams at Stake

“Until my diagnosis and obsessive research as a result, I had no idea that there was an awareness day for CFS/ME. This is quite a shame. How are we to be better understood, receive more research funds, and find common workable treatment options with so much silence?

Chronic Fatigue Syndrome is life altering. Period. In order to obtain a diagnosis you must have a reduction in activity/functioning by 50%. Does this not seem alarming to the general public? Imagine, if tomorrow you woke up and suddenly were only able to do 50% of what you had done the day before. Imagine, if even accomplishing this 50% was like trying to climb out of bed with a severe case of the flu. Imagine, that this is a good day and on a bad day you are barely functioning at all…”

From CFS/ME Awareness Day – Dawn, Daily Life with “Hidden” Chronic Illnesses

“I am posting now to reflect on how devastating this illness is, how hundreds of thousands of people suffer silently, and how much COURAGE it takes to live like this — year after year after year after ……”

From May 12 – ME/CFS Awareness Day – Nina, Nina Colors

Bloggers have been sharing their personal experience and writing about how ME/CFS effects lives as part of Awareness Day.

“I’m now in my 6th year of trying to fight M.E., that is, the 6th year from diagnosis. The first ‘real’ symptoms began in 2002, but it may have in fact taken hold even earlier than that. I remain determined to carry on fighting and hopefully not let it break me. Admittedly some days are very frustrating, but I refuse to let my spirit be quashed. The last few weeks have been very difficult – especially after a period of relative stability – and I again find myself with the frustration that is all too familiar. Of course, I am not alone. There are many others who fight on, trying to make the best they can of a very bad situation. I have a great admiration for all of them, many of whom have it far worse than I do. We are all blogging for Awareness Day.

From International ME/CFS & FM Awareness Day – Nikki, Freya Bean

“I started thinking about what I wanted to write and nearly decided not to write a post after all, as it seems self-indulgent, depressing and looks like a plea for sympathy. I don’t want to be defined by my illness. However, family, friends and colleagues have found it useful when I’ve been open about how it affects me, so here goes…

My symptoms at their worst:

  • Constant chronic fatigue. It’s difficult to explain how this type of tiredness feels, the nearest I can get is how you feel when you have flu, with no energy. Rest or sleep often makes little difference. At my worst, I hardly left the house, but have thankfully never been bed-bound, and happily I can now even manage days out.
  • Nausea and IBS symptoms.
  • Memory and concentration problems. Including not being able to read or not being able to remember/find words.
  • Palpitations (very scary).
  • Lack of body temperature control.
  • I’ve also suffered from depression alongside chronic fatigue.

From Raising Awareness of ME/CFS – Factor Fiction

“I am still largely stuck upstairs in my bedroom. Sitting upright for any length of time is still a huge challenge, so I still have to spend most of my time in bed. There are many, many days where I cannot use my laptop and my mobile phone is my only way to access the outside world; there are a lot of times that I’m too ill to text people and I have no contact with anyone outside my immediate family. I can still get very ill, very quickly and with little warning and ‘lose’ time because I’m only semi-conscious and unable to function. I have daily sinus and head pain, which greatly compounds the problems I have using the computer or any social interaction. My arms and legs feel like there is acid in my veins instead of blood, to the extent that wearing tights or jeans is becoming painful. There are still days where walking the few metres to the bathroom is a struggle because my body just doesn’t seem to work right and my legs won’t respond. I have constant brainfog, which makes concentration practically impossible and there are days where I achieve little more than getting dressed and watching some tv.”

From ME Awareness Week 2010 – Spirit of Phoenix

“* My overall health is currently about 60% of normal, but my symptoms fluctuate from day to day and sometimes within a day, so I can never make plans and expect to keep to them.

* On average I have to spend twelve hours of every twenty-four in bed – but not always the same twelve hours!

* On a good day I have the energy to walk for about two miles in the quiet countryside OR spend about an hour gardening OR dust and vacuum one room OR do about an hour’s shopping in the morning AND to do half an hour’s ironing in the evening – unless R’s out, in which case I have to do my own cooking INSTEAD.

* On a bad day I’d struggle just to walk a few yards across the road OR spend five minutes deadheading OR hang up a load of washing.

* On a really bad day it’s difficult for me to chew or swallow food – it’s been known for me to take an hour to get through one piece of toast.

* Some of my symptoms are constant, some are frequent, some are occasional. Most are mild, some are moderate, a couple are severe.”

From M.E. And Me – The Clockwork Dodo

Whether you are wanting to raise awareness of ME, CFS or Fibromylagia there are some simple things you can do to make a difference.

Extracts from Sue Jackson’s post giving some simple things you can do today:

“Participate in the CFIDS Association’s Virtual Lobby Day.

“Tell your friends and family about CFS…

“You and your friends and family can also donate money to help fund badly-needed CFS research…
“You can also donate to CFS research without spending any extra money by using a shopping donation site or links…

“If you have CFS, take a few minutes to fill out the research questionnaire at the Whittemore-Peterson Institute

See her post for full details International ME/CFS Awareness Day

The focus this year for www.fmaware.org is making Fibromylagia visible. Lana at Living, Loving It has some simple ideas for you:

“SEND the FM Aware Magazine link to 10 friends to help educate them about fibromyalgia.”
“TELL three people you meet today that it is Fibromyalgia Awareness Day.”
“SUPPORT the NFA and honor a loved one by sponsoring a “Lights of Hope” candle.”
“ADD the “Make Fibromyalgia Visible” logo to your e-mail signature…”
“BECOME an NFA fan on Facebook and keep up-to-date on all our latest news and information…”
“PLEDGE TO CARE and encourage others to join the NFA in its national advocacy efforts…”
“SHOW YOU CARE by placing one or more of our “Make Fibromyalgia Visible” products on your car or other prominent location…