lotusinthemud

m.e. disability scale

M.E. Disability Scale

This is an adaptation of the National Health Service Disability Scale, of which is used throughout the medical profession.

(*What is M.E.? See bottom of this post)

You may have seen this scale ‘the other way around’ with 0% referring to severe symptoms, and 100% as fit and well. However this scale is shown in Living with M.E.: The Chronic, Post-viral Fatigue Syndrome By Dr. Charles Shepherd ISBN: 0091816793.

 

O% - FIT AND WELL FOR AT LEAST THE PAST THREE MONTHS.

No symptoms at rest or following activity. Capable of full-time employment.

10% - GENERALLY WELL.

No symptoms at rest. Occasionally mild symptoms may follow activity. Capable of most forms of full-time employment.

20% - OCCASIONAL MILD SYMPTOMS AT REST.

More noticeable symptoms following activity. Some restriction of capabilities which require physical exertion. Able to work full-time but difficulty with work that requires physical exertion.

30% - MILD SYMPTOMS AT REST.

Limited ability to carry out some tasks which require physical exertion. May be able to work full-time.

40% - MILD OR MODERATE SYMPTOMS AT REST.

Variable ability to carry out tasks associated with normal daily activity. Unable to work part-time in a job involving frequent physical exertion. May be able to work part-time in other types of employment.

50% - MILD TO MODERATE SYMPTOMS AT REST.

Moderate to more severe exacerbation of symptoms following physical and/ or mental exertion. Unable to carry out any strenuous physical tasks. Able to perform light duties or deskwork for several hours a day provided adequate rest periods are provided.

what those with chronic pain or illness *do* want to hear you say

Here’s what the chronically ill wish you’d say to them. [:: link]

Published on July 5, 2012 by Toni Bernhard, J.D. in Turning Straw Into Gold

As a follow-up to last week’s piece, "What Those with Chronic Pain or Illness DON’T Want to Hear You Say", I thought it might be helpful to let others know what we wish they would say to us.

“You look so good, but how are you really feeling?”

It’s hard for us to respond to comments like, “You look so good” (or the always dreaded, “But you don’t look sick”) because we know that you’re just trying to be nice. If we respond truthfully with, “Thanks, but I feel awful,” you might be embarrassed or think we’re being ungrateful. It would be such a relief to be asked a question that goes to the heart of the matter: “How are you really feeling?”

“I’m going to the grocery store, can I pick anything up for you?”

This is a helpful question, as opposed to, “Call me if there’s anything I can do” (from last week’s piece). As I said there, we’re unlikely to respond to such an open-ended offer, meaning we won’t call and say, “Can you go to the grocery store and get me some dish soap?” We don’t want to make you go somewhere that you aren’t otherwise going. But if you let us know that you’re already going to the store, that’s a different matter entirely!

In fact, the more specific your offer of help, the better. For example, we’d love to hear an offer to do one of those life tasks that back up for us because we’re not well enough to get to it: take our car for an oil change (we’ll pay for it!); weed in our garden for a bit; do a load of laundry; even clean our refrigerator.

11 tips from 11 years sick

What I’ve learned from 11 years of chronic illness.

Published on May 29, 2012 by Toni Bernhard, J.D. in Turning Straw Into Gold

A year ago, I posted a piece titled, “10 Tips from 10 Years Sick.” Well, a year has gone by and I’m still sick. So, I’ve re-visited that post, changing some of the tips and adding to others. And, of course, there are now 11 tips, not 10! At the end of the post, I hope you’ll share your own experiences.

1. The onset of chronic illness or pain is the beginning of a grieving process.

I could have weathered the first three stages of the grieving process—denial, anger, sadness—with a lot more grace had I known that grief is a natural response to a sudden, unexpected change in health. But I didn’t know. The onset of chronic pain or illness is a major life event. Looking back on what happened to me, now it seems obvious that losing my ability to freely function would trigger denial, anger, and sadness. But it took me many years to understand this and, until I did, I wasn’t able to come close to touching that fourth stage of grief: acceptance.

:: link to article here

porridge for breakfast (and thoughts on micro-productivity) - from michael

I've been reading Michael's blog, listening to his podcasts and reading his charming books for a number of years. Michael, who has M.E., as do I, is so good at maintaining a life of creativity around his limited energy. Today he writes:

Last week was a busy week.

As well as running the Get The One Thing a Day Habit course for the first time I was working hard on getting some sample pages ready for the book I’m working on for Perigee Books.

I thought I’d planned things well, leaving myself plenty of time for rest and recuperation, but problems with my home Internet connection meant that I had to go to town everyday to upload material for the course and the book and do all the other things that I rely on having a connection to the web for (most of what I do!).

Being forced to focus

At the beginning of the week I really enjoyed my trips to town. I was forced to focus, carefully planning and fitting everything I needed to do into the couple of hours I was in town for. Making (I thought) the very best use of my time.

new criteria for myalgic encephalomyelitis / chronic fatigue syndrome unveiled

Page 1: Introduction

Characteristics are:

1.  Marked, rapid physical and/or cognitive fatigability in response to exertion, which may be minimal such as activities of daily living or simple mental tasks, can be debilitating and cause a relapse.

Page 2

2.  Post-exertional symptom exacerbation: e.g. acute flu-like symptoms, pain and worsening of other symptoms.
 
3.  Post-exertional exhaustion may occur immediately after activity or be delayed by hours or days.

4.  Recovery period is prolonged, usually taking 24 hours or longer. A relapse can last days, weeks or longer. 

5.  Low threshold of physical and mental fatigability (lack of stamina) results in a substantial reduction in pre-illness activity level.

B. Neurological Impairments 
 
At least one symptom from three of the following four symptom categories: 
 
1.  Neurocognitive Impairments 

a.  Difficulty processing information: slowed thought, impaired concentration e.g. confusion, disorientation, cognitive overload, difficulty with making decisions, slowed speech, acquired or exertional dyslexia.

b.  Short-term memory loss: e.g. difficulty remembering what one wanted to say, what one was saying, retrieving words, recalling information, poor working memory.
 

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.

::continue reading here

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?