Friday, 27 May 2011

Ten Commandments for Interacting with the Chronically Ill!

Flaming June by a painting by Lord Frederic Leighton, produced in 1895
I wanted to post something more personal, but was completely unable to accomplish that today, so I thought I would post this instead. It has been making the rounds lately and is nothing I am sure you have not heard before, but still... This has been passed around the Internet quite freely. Therefore, I am unsure who to attribute it to but I believe it originated from Susan Williams, publichealthalert.org


1. Thou Shalt Not Imply That We Are Not Truly Ill.
You will not convince us otherwise with remarks such as, “You LOOK good,” or “But you don’t LOOK sick.” Even if you meant them as compliments, we perceive those kind of statements as insults because they imply that you do not believe us.


2. Thou Shalt Not Imply That The Illness Can Be Easily Fixed.
People with chronic illnesses are persistent, if nothing else. We hang on, day after day. We see countless doctors, take numerous medications, do endless research, and continue hoping that the answer is just around the next corner. So please do not insult us by delivering diagnoses, remedies, or comments such as, “Why don’t you just...” or “Have you tried...” or “You should....” If it truly were that simple, I assure you that we would have done it already. We are sick, not stupid.


3. Thou Shalt Not Imply That We Brought This On Ourselves.
We did not choose to become ill, just as we do not choose to stay ill. Simply having a positive attitude is not going to solve our problem. One would never imply that a quadriplegic chose such a trial for themselves, or could get better “if they really wanted to”. Please afford chronically ill patients the same respect.


4. Thou Shalt Not Insult or Argue With Our Limitations or Behaviors.
If people with chronic illnesses push ourselves too hard, we can suffer serious consequences. Most of us have developed coping mechanisms to help us survive, and it is cruel to expect us to do more than we are able. One chronically-ill woman I know was actually told, “I wish I could have the luxury of sleeping all day.” Believe me, we would much rather be out working, playing, spending time with loved ones, participating in normal activities.

“Sleeping all day” is not a luxury for us – it is a critical necessity, one that we must take in order to protect whatever remaining health we have. Perhaps it may help to think of it in terms of being one of the medications we need to take. If you wouldn’t think of denying a diabetic their insulin, then don’t think of denying the sufferer of a chronic illness their critical need, whether it is a mid-day nap, avoidance of certain foods or environmental factors, or something else.


5. Thou Shalt Not Imply That You Can Relate To What We Are Going Through.
Unless you have a chronic illness of your own, you cannot possibly understand just how much suffering is happening. Of course you want to be compassionate and want to relate to people. But when you try to do this by telling a chronically-ill person that you are always tired too, it tends to make the person feel that you are minimizing their suffering. Try saying something more along the lines of, “This must be so hard for you,” or “I can’t imagine what you’re going through.” It really does make a difference to us.


6. Thou Shalt Be Mindful Of Other Family Members.

Chronic illness doesn’t just affect the person who has it, but the whole family as well. The trauma of the illness can evoke feelings of fear, depression, anger, and helplessness in all family members. The balance of family dynamics will most likely change, especially if it is a parent who is ill. The healthy spouse may end up taking on an overwhelming amount of responsibility, and even children will likely be involved in helping care for the ailing family member. Please keep these others in your thoughts as well, and make an effort to direct some special attention to them, without any mention of illness or disability.

Individual family members adjust in different ways and at different paces. All members might benefit from counseling to help handle the stress involved, and each family member also needs to have time to pursue their own individual interests. External support from friends, neighbors, extended family, religious institutions, and support groups may help ease some of the burden.


7. Thou Shalt Acknowledge Our Efforts and Celebrate Even Our Small Successes With Us.
For the chronically ill, any day that we can accomplish a task, no matter how small, is a “good” day! Our lives are often measured in terms of doctor’s visits and lab work, and our “success” measured by a rise in Natural Killer cell counts in our blood, or actually completing an entire load of laundry in just one day. Please do not look at us as if we are joking when we share these celebratory moments with you. Celebrate with us, be happy with us, and do not kill the moment by announcing that you just completed the Ironman Triathlon in record time.


8. Thou Shalt Offer Thy Specific Help.
There are so many ways to help -- the most difficult part is usually getting a chronically-ill person to accept that help. They do not want to feel like a “burden”. If you offer a vague, “Call me if I can help,” the call will probably never come. But if you are sincere, consider extending offers of specific help, such as a ride to a doctor’s appointment, or picking up a few groceries or the dry cleaning. These activities can be done in a way that does not add any extra burden to your own schedule. If you have to go to the grocery store for your own family, it really isn’t much extra work to grab an additional loaf of bread and jug of milk. If you have to swing by the post office, getting an extra roll of stamps or mailing an additional package isn’t much extra effort for you – but it can save a chronically-ill individual a lot of time, energy, and exacerbation of symptoms.


9. Thou Shalt Remember Important Events.
I’m not just talking about birthdays and Christmas. A major doctor’s appointment, lab test, or new medication are all important events to the chronically-ill person. Try to sincerely ask, “How was your appointment? How did the lab test go? How’s your new medication?” The chronically-ill person will appreciate that you remembered, and that you cared enough to ask about it.


10. Thou Shalt Get To Know The Person Behind The Illness.
The illness may be a part of us, but it’s not a part of who we ARE. We want to be known as more than “that sick person”. You may discover that we have a wickedly funny sense of humor, a creative imagination, musical talents, or any number of things that better describe who we are, and what we would rather be remembered for. (It makes for better gift ideas too -- rather than presenting us with yet another self-help book on the power of positive thinking, now you can give us a CD from our favorite singer or movie of our favorite actor instead.)


Most of all, please remember that the chronically-ill person is more than worthy of love, friendship, and support. Most chronically-ill people I know are the toughest nuts I have ever met. Indeed, I have come to believe that a chronic illness is not for wimps – rather, only the toughest of the tough can continually face the struggles of life while battling a debilitating disease. That kind of grit deserves nothing less than pure respect and admiration, even from our toughest critic -- ourselves.

 

Thursday, 26 May 2011

My life with fibromyalgia by Don Sorensen

I was very happy to see an article on someone with fibromyalgia in the Tribune. This ailment needs to be brought out of the shadows.

Don Sorensen
I am a 72-year-old man who has suffered with fibromyalgia my whole life. I fully understand how chronic pain can destroy lives. I have seen more doctors than I can remember. I have tried nearly every painkiller known to man, including morphine. None helped for more than a week or two.

I cannot remember when the pain first manifested, but I was probably 4 or 5 years old. The first diagnosis was growing pains, than it was bad arches, than shin splints, than an unknown back problem. I have had countless X-rays, MRIs and CAT scans. Every test has been negative; some of the doctors decided that it was all in my mind. When I was in my early teens a doctor told me that he did not feel the pain was life-threatening and that physical activity would be beneficial. I grew up a farm boy and since the doctors could find nothing wrong with me I worked as hard as any farm boy.

I have continued to search for relief from pain all through my life. It was during a physical at Mayo in the late 1970s that I first heard the word fibromyalgia mentioned. The doctor came into the room to discuss my test results and began this way.

“I have good news and bad news.”

“The good news is that what you are suffering from will not kill you. The bad news is that you may wish it would.”

Wednesday, 18 May 2011

The Journey by Mary Oliver

Lancing Manor Park Wood ~ Photography by me, Robin Dalton

One day you finally knew
what you had to do, and began,
though the voices around you
kept shouting
their bad advice--
though the whole house
began to tremble
and you felt the old tug
at your ankles.
"Mend my life!"
each voice cried.
But you didn't stop.
You knew what you had to do,
though the wind pried
with its stiff fingers
at the very foundations,
though their melancholy
was terrible.
It was already late
enough, and a wild night,
and the road full of fallen
branches and stones.
But little by little,
as you left their voices behind,
the stars began to burn
through the sheets of clouds,
and there was a new voice
which you slowly
recognized as your own,
that kept you company
as you strode deeper and deeper
into the world,
determined to do
the only thing you could do--
determined to save
the only life you could save. 

© Mary Oliver.

Tuesday, 17 May 2011

Fibro Docs from Fibroduck.com


A Wonderful tool from the delightful people at www.fibroduck.com .

Fibro*docs*

Welcome to Fibro Docs a set of template documents from Fibroduck for use with hospitals and medical professionals. We created them because so many of our regular contributors told us that they have difficulty explaining about their FMS and/or ME/CFS to medical staff when they may be feeling at their worst.

By using these documents, you can say exactly what you want to about your condition and store it away for the day when you need it. Also, because the documents carry the Fibroduck logo, the logo of a legitimate support organisation, you’re not going to come across as some kind of medical prima donna! (Please take careful note, though, of the copyright and liability statement on each document.)

In addition to the documents, which are intended for you to tailor, we’ve added some helpful notes on how to use them.



Colldruien

In The Chalice Well Gardens, Glastonbury ~ Photography by me, Robin Dalton, May 1, 2011

 A fabulous new site ( or new to me) that a friend shared with me. So I have decided to share it with you. I think it is hugely cool and fun!!

Welcome to 'Colldruin'  - a site dedicated to
all kinds of creative and spiritual inspirations influenced by Celtic Shamanism and Druidry.


Go deep into the twists and turns of the labryinth and click onto the symbols to discover the hidden treasures and surprises that lie within...

Monday, 16 May 2011

Beauty and Imperfection

Trees in My Wood ~ photography by me, Robin Dalton

If you look closely at a tree you'll notice
it's knots and dead branches,
just like our bodies.
What we learn is that beauty
and imperfection
go together
wonderfully. 
~ Matthew Fox


Sunday, 15 May 2011

Debunking Myths: 'More Exercise' for Fibromyalgia & Chronic Fatigue Syndrome

Gary and Dixie on the South Downs ~ Photography by me April, 2007
This post was actually published on Thursday, the 12th. I have no idea how it suddenly got moved to the front... Blogger is a bit of a mystery these days... 

I found this article on About.com by Adrienne Dellwo Debunking the More Exercise Myth

It's basic physiology -- when you feel sluggish, unmotivated and fatigued, getting up and doing some exercise causes changes in your body that boost your energy. Exercise also releases endorphins in the brain, and endorphins are great pain killers. So when people say those of us with fibromyalgia and chronic fatigue syndrome would feel better if we got "more exercise," there's something to it, right?

Actually, no. In normal, healthy people, yes -- exercise creates energy. Problem is, we're not normal and healthy.

Exercise is a tough subject, whether you have fibromyalgia or chronic fatigue syndrome. However, it's not the same for both groups, so let's look at them separately.

Fibromyalgia & 'More Exercise'
This myth is compounded by numerous studies showing that exercise lowers our pain levels and does in fact give us more energy. Doctors glance at the titles of these studies and tell the next fibromite who walks through the door to go to the gym. What they're missing is that the amount and type of exercise we need is far from what most people would even consider exercise.

If we exert ourselves to the point of exhaustion, we're probably going to trigger a major flare that lands us on the couch for days or even weeks. We all have different fitness levels so the exact amount of exertion we can handle varies greatly, but generally speaking, we should exert moderate effort for just a few minutes on a regular basis. There's ample clinical and anecdotal evidence to support that regular exercise, done with extreme moderation, helps us. That means, for us, an exercise regimen might consist of 2 minutes of gentle yoga per day. If you're in better shape, maybe you can handle a 10-minute walk or 20 minutes of aquatic exercise to start with.

I consider myself in moderately good shape for someone with fibromyalgia -- I can go grocery shopping, clean the kitchen and do a couple loads of laundry in the same day (most of the time, anyway.) I can also get through a 30-minute yoga routine without wiping myself out or having nasty repercussions. I couldn't do that a year ago, though, and if I'd tried, I would have crashed afterward. Two years ago, I would have crashed 10 minutes in; and three years ago, just getting into the first pose would have done me in on bad days. While I'm not the most consistent about exercise, I have worked hard to slowly and steadily increase my activity level.
That slow, steady pace is what we need. If all you can do is 2 minutes, try to be consistent about your 2 minutes. Eventually, you'll be able to handle 4. The key is not pushing yourself too far too fast, and expecting setbacks along the way.

Chronic Fatigue Syndrome & 'More Exercise'
A key symptom of chronic fatigue syndrome is post-exertional malaise. It's a period of intense, often debilitating symptoms that follows any kind of exercise or exertion and lasts for a day or more (usually more.) Research actually shows abnormalities in the blood chemistry of people with chronic fatigue syndrome after they exercise, and those abnormalities could very well provide the long-awaited diagnostic test for this condition. Some preliminary research also shows abnormal heart rhythms during exercise, which could mean that exercise is actually damaging your health.

For years, some chronic fatigue syndrome doctors and researchers have touted a treatment called graded exercise therapy (GET). It's controversial to say the least, and while some studies have shown that it can help some people, the methods used to arrive at that conclusion are frequently called into question. Looking over the available research, it seems to me that GET is only recommended because it's more effective than most treatments that have been studied -- and that's not saying a lot. However, it does help some people, as evidenced by the comment below from Dr. Donnica Moore, a well-respected expert who just signed on to work with the Whittemore Peterson Institute.

So what does all this mean about exercise and chronic fatigue syndrome? It really depends. There's clearly a reduced exercise tolerance, but you're the only one who can determine exactly what your body can tolerate. It all depends on your current fitness level and severity of your illness. We all know that being sedentary increases muscle aches and pains, so at the very least you might want to learn some simple stretches you can do while laying in bed. Because of the evidence suggesting heart abnormalities, you should talk to your doctor about testing your heart to make sure exercise is OK -- here's a link to studies you can show your doctor, and they contain testing information: Cardiac Involvement in Chronic Fatigue Syndrome.
What If You Have Both?
If you're diagnosed with both fibromyalgia and chronic fatigue syndrome, you're in a particularly difficult situation -- the right kind of exercise may relieve some symptoms while exacerbating others. Again, you're the only one who can figure out the right level of exertion for yourself.

The Persistent Myth
The exercise myth is one that's not likely to go away -- it's pretty firmly entrenched in the medical establishment, and a consequence of an uninformed public. What we need to do is know our own bodies, try to educate those who are receptive, and ignore those who aren't. We're not doing any good for anyone by over exerting ourselves and winding up in bed for a week.

Click on the LINK  to read the rest.

Fibrofog Today

Lancing Manor Rose Garden ~ photography by me, Robin Dalton- May 2011




Today I have fibrofog which means I am incapable of organised, coherent thought, or speech for that matter. I also have slight tremors in my hands which makes typing this practically impossible.

However, it would appear that on days with extreme fibrofog there is less pain. A trade off of some sort, I suppose.

However in my never ending search for every single bit of information I can find about this disease I have, I found this from the World Health Organization:

Health is more than simply the absence
of illness. It is the active state of
physical, emotional, mental, 
and social well-being.


That is all from me today.

Monday, 9 May 2011

Treating Chronic Fatigue Syndrome and Fibromyalgia: A Free Online Self-Study Course

I have newly discovered hope:

"Step by step, you can create a treatment plan that fits your individual situation, using a three-step process: study, plan, act."

Treating CFS and Fibromyalgia

Fabulous New Blog from Sleepy B


I could have written this myself. It so mirrors my experience. Except I was an adult when I had to start dealing with this. The courage and strength of this teenager is truly an inspiration to us all!!