lotusinthemud

the trauma of chronic illness: coping

Traditionally, the experience of serious illness has been approached in two ways: (1) a gloomy perspective of resignation, self-denial, and helplessness, or (2) a Pollyanna approach that denies altogether that there has been a real trauma. Both of these perspectives distort and disguise the reality of chronic illness.

The first perspective views the chronically ill person as a failure. This is the patient who does not respond to the "miracle" of modern medicine, and somehow the lack of recovery is often perceived as the patient's fault. This attitude of blame accounts for some of the worst psychological abuses of patients by health practitioners and caretakers, an attitude typified by the too-frequently heard statement, "Stop complaining. You simply must adjust." Unfortunately, the sick person may also adopt this punishing attitude toward himself or herself. Sadly, the word "adjust" too often means "resign," "settle for less than a desirable existence," and "surrender." At its worst, "adjust" is just another way of saying "You are now a nonperson without the right to experience strong passions, desires, or fierce and unyielding hope." All the anger and blame inherent in this attitude is misdirected: the patient rather than the disease becomes the target.

The Pollyanna approach is typified by -- and fueled by -- personal stories or testimonials of complete recovery from extreme illness or disabling conditions. These stories tug at the heartstrings and catch the fancy of all who read them. Besides creating false hope by overplaying the likelihood of complete recovery, these stories consistently underplay the sadness and feelings of worthlessness that are part of the legacy of any physical or emotional trauma.

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how to be sick - a review by a psychiatrist

Here's a review of the book by a psychiatrist who mostly works with people in
chronic pain:

This book is spectacular!

The author Toni Bernhard developed a post-viral illness in 2001, later diagnosed as Chronic Fatigue Syndrome.  Although she was a serious student of Buddhist meditation already, this experience challenged her body, mind and spirit to its core.

What she shares in How to Be Sick is how Buddhist-inspired practices have helped her cope with her illness and its consequences, as well as continue on her spiritual journey.

This is a book for people who will not be their old self again and for all those for whom, at least now, getting better isn’t possible.  This is a book that most reassuringly says even to those people, ”You, too, are going to be okay – even if you never recover your health!”

'pacing' for m.e.

Pacing

 The strategy known as pacing is based on the observation that people with ME tire easily. It’s one of the main characteristics of the illness. The approach is also used by people with multiple sclerosis, Parkinson’s Disease and other medical conditions where fatigue plays a major role. The concept was adapted by Goudsmit for use by people with ME, using information from Drs. Ramsay, Parish and Dowsett. During the nineties, details of this approach were disseminated through the various patient groups, so people were no longer left to discover pacing through trial and error.¹

The advice was further refined a few years ago as a result of feedback and new research.

Basic guidelines

The aim of pacing is to remain as active as possible but to avoid the relapses resulting from over-exertion. Patients may try to increase their activity levels every few days, as long as they remain “within the limitations which the disease imposes” (Ramsay. Medical Update 1990, no. 1).

In practice, pacing means stopping an activity when you feel you have reached that point where pleasant tiredness becomes unpleasant, where arms or legs begin to feel weak, or where one starts to feel unwell or sick. Some might find it more helpful to rest for a while at the first sign of muscle weakness. As Dr. Ho-Yen wrote in his book, “learn to listen to your body. It will tell you when there is a problem”.

Making a rough plan of one’s activities for the day or days ahead is fine as long as you rest when you feel you need to. Pacing does not require you to set goals and achieve targets. The idea is to make limited energy go further. For instance, you can make a list of things which need to be done per week. Make sure you allow some space between the most tiring of the activities. If you still do the housework yourself, wash one day, hoover the next. Also, try to include at least one quiet day after something particularly stressful or exhausting. If you are severely affected, you may require three free days, or even a week or more. You will know from experience how you tend to respond to various activities and what you can manage per day without exacerbating the illness.

Some specialists recommend keeping a diary. This should include details of activities and symptoms, as well as food eaten and any stressful events. As most relapses do not occur at random, diaries can help you to identify triggers and reveal the relationship between exertion and symptoms. In the beginning, it is also useful to include an assessment of one’s emotional state, as stress saps your energy and undermines your immune system.

chronically wiser - review of 'how to be sick'

Here's a review of two books on the same theme,Toni Bernhard's being the one I'm reading at the moment:

Chronically Wiser

Herman Salton

Toni Bernhard
How to be Sick: A Buddhist-Inspired Guide for the Chronically Ill and
Their Caregivers
Wisdom, 2010
176 Pages
£11.99
ISBN 978-0861716265

Roberta Pelletta
Stanchi si diventa: Manuale di soppravvivenza alla CFS
Turin: Seneca Edizioni, 2010
41 Pages
$10.00
ISBN 978-8861222113

Imagine you are a high-flying law professor at the height of your career. You have a happy marriage, are involved in the local community, love your subject, and enjoy working with students. Your socio-economic position is comfortable, and your family relationships are gratifying. In short, life is smiling at you, and you are smiling back.

Then you go to Paris—and everything changes. A mysterious bug floors you. Standing up becomes a struggle, noise bothers you, and you are magnetically attracted to your bed. Except that you are too exhausted to sleep—too exhausted, in fact, to do anything at all. You return to the classroom—but the noise, lights, and interactions are just too overwhelming. You start writing a paper—but the brain-fog, headache, and impaired memory allow you to work only for a few minutes. You explain what’s happening—but nobody understands, and since you don’t either, how can you blame them? Days go by and doctors reassure you it will go away. Except that it doesn’t, and ten years later, you are still bed-bound.

This is the perfect storm that hit Toni Bernhard—and the other 17 million people in the world who are estimated to be suffering from myalgic encephalomyelitis (also controversially known as CFS, or chronic fatigue syndrome). At its worst, this Kafka-esque illness is as debilitating as late-stage cancer, multiple sclerosis, and HIV—but it is not fatal, and so does not carry the drama (or empathy) associated with them. There is no cure for it and patients—including children—are largely left to themselves and their families. It can hit anybody, at anytime, anywhere in the world, without any warning.

doctor convinced that m.e. is real, after many years of scepticism

From the 'Ask the Doctor' column, Daily Mail, 7 June 2010

By the way... at last I've been convinced that ME is real.

I admit it, I was wrong. For many years, I - like many of my medical colleagues - have blamed ME on psychological or behavioural causes. Then, last month, I attended the 5th World Conference on ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome).

There I spoke to a number of experts who were emphatic that the evidence shows the condition really does have a viral origin.

This has never previously been clear - before, there had been only hazy circumstantial evidence. There have been two problems really; first, identifying the cases - who does and who does not have ME/CFS?

the most effective treatments for m.e./c.f.s.

by Lourdes Salvador Norwegian scientists surveyed 828 chronic fatigue syndrome patients to find out what treatments were most and least helpful. Rest was rated the most helpful by 97% of participants, followed by pacing at 96%. Pacing is a method of managing energy expenditure by limiting activities to the most essential that can be handled at a comfortable pace.

The easiest way to understand pacing is to imagine starting the day out with a handful of cards and each time energy is expended, a card is lost. When the cards are low, the day is over and sleep is required. Each activity of the day requires a card, including getting dressed, bathing, cooking, and visiting with someone. If too many activities exhaust the supply of cards, a deficit ensues and one nights sleep is not enough to recuperate.

Most of us start the day with unlimited cards. Certainly we have enough to get through until bedtime. For people with chronic fatigue syndrome

, they have few cards to begin with and must pick and choose how they expend their energy so that they don´t run out of cards and collapse. This forces them to prioritize, establish routines, schedule extra rest, and keep activities short. This is known as pacing.

People with chronic fatigue syndrome also engage in shielding, which was rated as highly helpful by 96% of study participants. Shielding involves surrounding oneself in quiet and, in some cases, darkness. People with chronic fatigue syndrome are often sensitive to light and sound, which expends their limited supply of energy by stimulating the central nervous system.

One of the most misconceived treatments recommended by the medical profession is graded exercise therapy, yet 79% of the participants experience deterioration as a result. It stands to reason that with such limited energy to expend, using too much on exercise leaves woefully little, if any, energy for tasks of survival such as fixing meals, eating, paying bills, and bathing.

"Patients´ experience is important in this context," says Bjørkum and colleagues, "Graded training may cause deterioration of the condition in many patients."

Another failed treatment was cognitive behavior therapy, yet this is also widely recommended despite the scientific knowledge that chronic fatigue syndrome

is a serious neurological disorder which can not simply be "thought" away.

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re-framing m.e.

Re-framing ME

A chance meeting of art and science has led to a creative collaboration designed to raise the profile of an “invisible illness”.

Juliet Chenery-Robson decided to use photography to make people look at Myalgic Encephalopathy (or ME) in a different light when her 18-year-old daughter Emilia was diagnosed with the illness five years ago.

Despite affecting thousands of people in the UK, ME remains misunderstood by many health professionals, with many still believing it is “all in the mind”.

While looking for more subjects for her exhibition, Juliet was put in touch with Professor Julia Newton, a Clinical Professor at Newcastle University’s Institute of Ageing and Health, who is also a patron of charity ME North East.

Professor Newton’s team leads the way for chronic fatigue research in the UK and is one of the few places in the country focussing on the biological indicators behind illnesses such as ME.

nick clegg's answer about m.e.

Sunday, 03 February 2008 18:42

In a letter to a constituent who lives in Sheffield, Liberal Democrat leader Nick Clegg MP criticises the NICE guidelines on ME/CFS and calls for the setting up of an independent scientific committee to oversee all ME research.

The recently elected party leader shows he is in listening mode – following The ME Association’s recent campaign asking members to write to their MPs backing calls for an adjournment debate on ME/CFS in the House of Commons.

The call for an independent scientific committee echoes one of the recommendations made in November 2006 by the all-party Group for Scientific Research into ME, which under Ian Gibson MP conducted a lengthy inquiry into the state of ME research in the UK.

Although John Bercow MP missed out in the ballot for an adjournment debate in November, The ME Association understands that he will try again soon.

In the letter, Mr Clegg wrote:

Dear Mr xxxxxx

Thank you for your correspondence regarding some of the problems that are currently causing concerns for people with ME/CFS including inadequate research and the recent NICE guidelines on the subject.

Unfortunately, a ballot to secure an adjournment debate on these issues, scheduled for the week commencing November 19, was unsuccessful.

As I’m sure you are aware, one of the main obstacles to the adequate treatment of ME is the lack of knowledge and consensus about the disease. There are many theories as to the causes of the disease but no conclusive proof to fully support any of them. This is why it is vital that more research is done into the causes and progression of this difficult to diagnose condition.

'stillpoint' and 'one breath at a time'

Here are two websites for those with chronic illness who are interested in Buddhism and meditation.

'stillpoint' in the new home for material that was previously on another website of the same name and includes a large amount of resources. The stillpoint community, which has existed for a number of years, was originally for people in the U.K. who have M.E./C.F.S. It has now expanded to include people who have other chronic illnesses and who live in other parts of the world. There is an email group, Breathing Space, for keeping in touch with others. There is also a stillpoint group on the Friends of Amida Buddhist social network.

'one breath at a time' is regularly updated with short Buddhist meditations for those who are unable to practice for long.

'but you don't look sick' - people with me/cfs fight the 'lazy' label

....“The first thing I had to give up was my work,” Deering said. “I just kept thinking, any day now, I’ll feel better. It took me years to learn that wasn’t going to happen.”

Chronic fatigue syndrome, also known as chronic fatigue and immune dysfunction syndrome, is a complex, mysterious and widely misunderstood illness. Characterized by profound fatigue that is not improved with bed rest, the condition also results in a myriad of other debilitating symptoms.

Nancy Gordon, another local sufferer of CFS, was a licensed clinical social worker in a private practice before a car accident in 1992 changed her life. Gordon was diagnosed with fibromyalgia in 1995, and as she became more paralyzed with pain, fatigue and a loss of cognizance, she finally began to rely on disability in 1998. She was diagnosed with CFS in 2000....

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::read more here