lotusinthemud

The Burdens Posed by Invisible Physical and Mental Illnesses ~ Toni Berhard

Toni writes:

I look healthy. My friend, whom I’ll call Gail, also looks healthy. The difference is that I suffer from a physical illness and she suffers from a mental illness: depression. The similarity is that both of our conditions are invisible to others.

Despite the different source of our illnesses, our lives are parallel in several ways. I want badly to be able to go places and to socialize, especially at night when visiting with others is often at its richest. But I can’t. My body’s limitations keep me housebound. And Gail? Her body doesn’t keep her from these activities, but her emotional state does. She finds it hard to leave the house. She finds it hard to socialize. Some days, she wants to curl in a ball and stay in bed. I do that too, but for a different reason.

The fact that both of our conditions are invisible to everyone but those we’re closest too imposes many of the same burdens on us. This piece will discuss four of them.

1. How to manage others’ expectations…and how much to share with them.

This can be a major problem during the holidays and at family gatherings. We may be suffering terribly, even though we look fine. As a result, people may expect us to pitch in more and be more social, but it’s not healthy for us to put ourselves in a situation where we’re forced to do things that make us feel worse physically or emotionally.

Chronic fatigue syndrome is so much more than exhaustion

When I told friends earlier this month that I’d planned a trip to go visit my friend who is sick, I started to see it as a way to spread awareness about his disease. The usual response to “I’m going to an old friend’s house who’s severely ill” is some form of the hopeful “Give them my best.” I took it a step further and said with purpose, “I can’t, really. I won’t be able to see him.”

Their response was always, “But I thought you said he only had chronic fatigue syndrome?”

:: link to continue reading

A Buddhist Woman Confronts M.E.

by Kathryn McIntosh (Tzunma Venerable Lobsang Khandro) 

 

 

 

 

November 2013

 

I was diagnosed with M.E. a long time ago. In 1977 I had a severe virus; I was on antibiotics due to pneumonia-type symptoms as well as influenza-type symptoms. I was home for a month. When I was a child I often suffered from upper respiratory problems and suffer from labrynthitis frequently, which affects my balance. During this first year I had no energy, I could hardly move. Now if I am honest here, I did turn to using stimulants during this year, just so I could go out and keep up with my other 17-year-old friends. I stopped using these a year later as they weren't helping and I no longer felt it was such a good idea (growing up, I imagine). I fell pregnant the following year and married. Yes, looking back on this now, it wasn't a good idea at all as my body had not recovered. Now it was busy creating a new life. After the birth of my son I was wiped out, no energy. They said it was post-natal depression. I wasn't depressed, just tired.

For the next 20 years they had me on everything they could throw at me! They did all the tests - diabetes, anaemia, the list is endless - and they came back negative. I had pain, migraine, back problems, sleep problems; I won't bore you because they are classic M.E. symptoms. I could name every antidepressant on the market for you, and a few sleeping tablets as well, along with reflux medicine so my poor stomach could handle all the medication I was given. I have taken mixtures of all of them at one time or another. And I can say that they harmed more than they helped. We live in a pill culture; if you have a problem, cure it with a pill, cover it up and make the patient happy. Now, this isn't true for everyone and I am NOT saying you should just drop your meds! Since then I have controlled things myself; I tried a few other things that helped a little, other things didn't. Whenever I went to a doctor the answer was the same, pills or "What do you want from me?" was one GP's query. I had no one in the medical profession to trust.

I have kept various jobs; I was a paralegal, a veterinary nurse for a few years after college, a computer engineer later, and finally a manager in the National Health Service. All the while in the background, quietly lurking was M.E. I had to be careful and sometimes, no matter what I did, I got very sick and very suddenly. This annoyed my employers, but I was not going to be "labelled". Even working for the NHS you cannot be open about an illness that they still consider all in your head. Oh yes, the HR department and your manager will tell you, "Come to us, we will help you. It's illegal to discriminate." Yes dears, but discrimination can be a subtle monster, and still happens every day. I saw first-hand the discrimination and dismissive attitude toward people with an illness, even within the medical profession itself. I know that anger is the enemy of good health and as a Buddhist I am dedicated of course to freeing the mind, thus freeing the body. So rather than being angry, I focused on the little things I could do. Then I did my best with that; if everyone else wasn't happy, well that had to be too bad for them. I would just quietly get on with it. No employer ever knew I had M.E., and that remained the case right up until my retirement this year. I never told anyone.

No friends, I don't recommend this to others; we should be able to tell someone and get help and be treated as equals. At the same time, I know you are all nodding your heads as you have been there too! I was from a different generation, the one where these kinds of illnesses were shameful, and no one spoke about it. So what do you do? I know, you are doing the same as me, saying nothing. Those of you who have spoken up may be regretting it. If you are lucky, your boss is supportive and that person deserves an award of the highest kind! Most of us remain in silence.

A Buddhist Woman Confronts M.E.

By Kathryn McIntosh (Tzunma Venerable Lobsang Khandro)

 

 

 

 

November 2013

 

I was diagnosed with M.E. a long time ago. In 1977 I had a severe virus; I was antibiotics due to pneumonia type symptoms as well as influenza type symptoms. I was home for a month. When I was a child I often suffered from upper respiratory problems and suffer from labrynthitis frequently which affects my balance. During this first year I had no energy, I could hardly move. Now if I am honest here I did turn to using stimulants during this year, just so I could go out and keep up with my other 17 year old friends. I stopped using these a year later as they weren't helping and I no longer felt it was such a good idea (growing up I imagine). I fell pregnant the following year and married. Yes, looking back on this now it wasn't a good idea at all as my body had not recovered. Now it was busy creating a new life. After the birth of my son I was wiped out, no energy. They said it was post natal depression. I wasn't depressed, just tired.

Then next 20 years they had me on everything they could throw at me! They did all the tests; diabetes, anaemia, the list is endless, and they came back negative. I had pain, migraine, back problems, sleep problems; I won't bore you because they are classic M.E. symptoms. I could name every antidepressant on the market for you, and a few sleeping tablets as well, along with reflux medicine so my poor stomach could handle all the medication I was given. I have taken mixtures of all of them at one time or another. And I can say that they harmed more than they helped. We live in a pill culture; if you have a problem cure it with a pill, cover it up and make the patient happy. Now, this isn't true for everyone and I am NOT saying you should just drop your meds! Since then I have controlled things myself; I tried a few other things that helped a little, other things didn't. Whenever I went to a doctor the answer was the same, pills or "What do you want from me?" was one GP's query. I had no one in the medical profession to trust.

living with m.e.

Dawn Marie writes:

As a nurse, I was always very proactive, never still, ambitious and full of energy.

But after a while, night shifts and long day shifts began to take a toll on my health, my energy began to lag and my digestive system was awful. I contracted a severe virus while working at the hospital, my health really deteriorated and finally I couldn’t work.

I was at the point of collapse. I developed ME/CFS.

What is ME/CFS?

Myalgic Encephalopathy, sometimes known as Chronic Fatigue Syndrome, has a number of symptoms, including:

• Extreme fatigue that doesn’t improve after rest
• Cognitive impairment
• Brain fog
• Memory problems
• Flu symptoms
• Sensory impairment (intolerance to light, sound and odours)
• Dizziness and feeling lightheaded or faint
• Anxiety
• Vasovagal syncope (a reaction to certain triggers, resulting in brief loss of consciousness)
• Orthostatic intolerance (symptoms when standing which are relieved when you sit down)
• Hypoglycaemic episodes
• Pain in joints and muscles
• Blurred vision
• Sore throat
• Neurological symptoms (such as feeling like walking on rubber)
• Clumsiness
• Insomnia
• Jittery sensations

Living with ME/CFS

It’s not easy. Life is not as it was. For almost nine years I’ve been mostly in the house trying to recover my health.

You may know what this illness entails and if you do then you’ll be aware of how debilitating it is and what a huge impact it has on quality of life.

Each day is different, every hour is different and I could even get that down to minutes.

Why?

Because ME/CFS is tenacious and it likes to keep you on your toes and surprise you often.

My main battle is with energy. Can you imagine life with little to no energy? Add to that pain with almost every movement you make (especially in hips and wrists, for me) and a dollop of confusion, memory loss and dizziness. Oh and not forgetting the feeling of having the flu.

This is what happens regularly when I’ve done something different and used up too much energy in one go.

I have to try to pace my activity during the day.  If I don’t then I’m in a pretty bad way for the majority of the time. Pacing helps but it is not a cure. Up to now there is no cure.

I try to switch activity often so as not to deplete energy from one source. I need to try to do no more than 80% of what I think I can do, in order to leave some fuel in the tank.

This means that I can’t do physical or mental activity for too long and importantly (very very importantly) I need to rest in between the activities. And by activity, I mean reading or washing up, going up the stairs or conversing with someone.  Any activity saps my energy fast.

Some days are better than others.  ME/CFS fluctuates randomly and sometimes predictably. For instance, if I have a wedding to attend or an unusual outing I can guarantee that sometime between 48-72 hours afterwards I’ll have payback. 

You have to be prepared to accept the consequences for doing extra to the norm. Sometimes life happens and other stuff is unavoidable and sometimes I just think ‘what the hell, I have some energy and I’m going to enjoy it’, but when payback arrives it is horrible, truly horrible.

Payback can last from weeks to months and I’m literally housebound during that time. I’m in the house the majority of the time in order to pace myself and be within my limits.

I’ve tried numerous treatments and supplements.  I’ve tried therapies and exercise (stupidly as I relapsed severely).

:: link

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.